Many preeclampsia survivors still struggle with a variety of their feelings many years after their birth. Most mums and families have told us that writing their story has often helped express those feelings. Sharing your story can help to process your pregnancy experience, as well as inform others who are or have been affected by preeclampsia.
If you would like help to write your story, please contact info@aapec.org.au
Walk in Her Shoes
The very personal stories you will read here include some moving, confronting and also heart-warming descriptions of women experiencing preeclampsia and sometimes accounts of very sad outcomes for both mother and baby. Please consider adding sharing your story here so that others can read about your experiences. Your friends and family may also find reading your story very helpful in understanding your experiences. We welcome your photos and you can upload them with your story.
- Alison and Philip Armstrong’s Story
- Ashleigh Alvarez’s Story
- Belen Walsh’s Story
- Brooke Dyan Hally
- Dannielle Holland’s Story
- Elizabeth Andersen
- Fiona Dixon’s Story
- Jake
- Jayden Luke Thomson
- Jaynee Charlston’s Story
- Julie Oliver’s Story
- Kathleen & Joe Conway’s Story
- Liam Jordan Van der Hoek’s Story
- Liam Mark Pyke
- Phoebe’s Story
- Robyn Harries’s Story
- Ryan Whittington
- Theresa Fuller’s Story
- Toni Williams’s Story
- Zoe & Troy Lee’s Story
Alison and Philip Armstrong’s Story
The date was 14 May 2003 and I remember the moment vividly. It was early in the morning, and after an agonising two-week wait, I’d jumped out of bed to perform a pregnancy test. Philip and I had just been through our first cycle of IVF and the result would be known in five minutes. I couldn’t bear to look at the little indicator square on the tester kit, so I covered it up and then waited for what seemed like an eternity. Finally, after five minutes, I very slowly uncovered the kit to reveal a cross – I was pregnant! In this moment, years of uncertainty, heartache, hope and fear ended and the experience of pregnancy began.
During the first two trimesters of my pregnancy, everything was wonderful. I experienced very little in the way of morning sickness, instead only having a general feeling of nausea from time to time. My obstetrician was extremely happy with our progress and all our test results revealed a healthy mother and baby. Each week, I read my pregnancy books to find out all about the baby’s size and progress. I followed the books’ recommendations for diet and exercise to the letter. Philip and I attended ante-natal classes and a yoga workshop, in preparation for the “ideal” birth that I had in mind.
Things became a little less smooth in the third trimester, when I developed carpel tunnel syndrome. My hands, wrists and forearms were constantly painful and I had to cut back to part-time work and wear splints. The pain kept me awake at night and there were many times when I walked around crying at nighttime. My physiotherapist advised me to plunge my hands into jugs full of ice when the pain became severe, so our freezer was constantly full of bags of party ice.
As my due date crept closer, I began to experience swelling in my feet and legs. It wasn’t long before I had to swap my enclosed work shoes for sandals and then, in my final week of work, I was forced to wear thongs, as nothing else would fit. I wasn’t worried though, as everything was still going well and, in the words of my obstetrician, my blood pressure was always “perfect”.
I finished work the day before Christmas Eve, thinking I had three weeks to prepare for our baby’s birth. Somewhere in the back of my mind, I had a vague feeling that the baby might be early and I wouldn’t have everything ready in time, but I just dismissed this as nerves. We celebrated Christmas Day quietly with family and, although I was feeling very heavy, tired and hot, everything was fine. We certainly had no idea of what would happen in the next few days.
I think things really started to change from about the 27th of December. Philip tells me that I had been complaining of bad headaches in the days leading up to this, but I don’t remember these. My first memory of there being a problem (though I didn’t realise it at the time) is that I couldn’t lie down to go to sleep. I remember lying on the bed that night and feeling as though I was suffocating, unable to breathe. It was an awful feeling. I would lie down for a few seconds and then sit up and have a coughing fit. Eventually, I propped myself up with a pile of pillows and slept, fitfully, sitting up. The same thing happened the following night and so I was feeling very tired during the day.
It was the 29th December and, at 37 weeks, I found myself feeling so uncomfortable in the morning that I didn’t know whether to sit, stand or walk around. Whatever I did, I wanted to be doing something else. I’d developed pain under my ribs, but dismissed this as being the result of all the coughing I’d been doing at night. During the entire pregnancy, I hadn’t taken a single paracetamol tablet, but now I took a couple and prayed they would bring me some relief. The pain subsided enough for me to sit and watch television, so I concluded that I must have pulled some muscles with all my coughing.
I also felt rather breathless, and just generally very uncomfortable, but assumed this was all a normal part of pregnancy, since the books spoke about feeling breathless towards the end and it was a hot summer. I told Philip that I didn’t know how I was going to get through the remaining three weeks of the pregnancy. We were going to see my obstetrician that afternoon and I secretly even contemplated asking her to book me in for a caesarean, because I couldn’t handle what I believed to be the normal discomfort of pregnancy any longer.
A c-section was the last thing I had ever wanted, but now it seemed like a welcome thought. I remember thinking that I must be somehow “weak” if I couldn’t deal with the physical complaints that (I thought) all pregnant women endured.
In the afternoon, Philip and I went to the hospital for my obstetrician’s appointment. I had difficulty walking from the car park to the hospital building, a fairly short distance, as I was so out of breath. As soon as I saw the obstetrician, I told her that I felt awful. She took my blood pressure and, instead of uttering the usual “perfect”, didn’t say a word, but instead gave me a container and asked me to produce a urine sample.
I had trouble producing much urine at all, but the obstetrician told me she only needed a small amount. She went into a small room, came back out and showed me a little chart. She then said that my protein level was at the highest end of the chart, before announcing, “You’re having a baby this afternoon”. I said, “You’re kidding” and she said no. My first thought was that the high protein level in my urine obviously indicated that I was about to go into labour and the baby was about to be born. My second thought was that I hadn’t finished washing all the baby’s clothes.
The obstetrician then told me that I had severe acute pre-eclampsia and gave me a brochure about it. I remember it was at this point that I started to realise things were not okay. I asked the obstetrician if I was going to be okay (and remember suddenly wondering if I could die). She said I was as long as we got the baby out soon. I couldn’t bring myself to ask if the baby was going to be okay. The obstetrician told me that she knew I had been keen for a natural birth but that the baby needed to be delivered straight away and that it would take too long to induce me.
Delivery was scheduled for an hour’s time and we were sent straight to the labour ward. Along the way, I really began to struggle to breathe, so Philip grabbed a nearby wheelchair and pushed me the rest of the way. I was shown into a room in the labour ward and then Philip left to go and collect my bags and the video camera from home. We were both trying to process what was happening.
Philip told me later (much later) that, while I was in the toilets producing my urine sample, the obstetrician had told him that the situation was extremely serious and that I was dying. She said that, if the baby wasn’t delivered immediately, the baby and I would both die and that, in all her years as an obstetrician, she had never seen blood pressure as high as mine. I was in immediate danger of having a stroke or a heart attack. Philip was asked to remain calm and give no indication of any of this to me, so he dealt with it all on his own, so I wouldn’t panic.
While Philip was collecting everything from home, the anesthetist visited me. He told me it was possible that I may need a general anesthetic, if my blood platelet levels were very low. This is when I first felt really upset about everything, as I could cope with a caesarean but desperately wanted to be awake when the baby was born and for Philip to be allowed in the theatre as well. The anesthetist also told me that it isn’t unusual for people to get worse in the 24 hours after the delivery, before they get better. A short time later, I received the news that my platelet levels were high enough for me to have a spinal block, which was very welcome news!
By this stage, I was starting to get very concerned as to whether Philip would be back in time. There was no way I wanted him to miss the birth. I asked the midwife if it was possible for them to start later if Philip didn’t return in time, but she said it wasn’t. She assured me that the baby wouldn’t be born for about 30 minutes after I went into theatre, so that Philip should be back for that part. As the time drew closer, with no sign of Philip, the midwife put a disposable camera on the table beside my bed (ready for the staff to take photos if Philip hadn’t arrived). Just as it was time for me to go to theatre, Philip walked in. I have never been so glad to see him!
The whole experience surrounding the birth was surreal – I describe it as feeling as though I was in the Twilight Zone. Fortunately, Philip videoed (nearly) everything and I’m so thankful to have the tape to watch. When the obstetrician announced, “It’s a girl!”, I remember feeling very happy, but also thinking to myself, “I think I’m supposed to cry now”, because, in all the visions I’d had of myself giving birth, I saw myself crying tears of joy. In reality, though, I just didn’t feel compelled to cry. I felt a mixture of happiness, relief that our daughter, Alyciana, was actually born (so that we would both be safe), tiredness and nausea.
Later, after we were back at home, I felt terrible because I remembered feeling too sick to hold Alyciana and, as a result, pushing her away when they’d offered her to me. Finally, when I watched the video of her birth quite a number of months later, I cried tears of joy because I saw that I actually had held her immediately after she was born. I had only declined the opportunity to hold her a second time. Months of guilt and grief, that I hadn’t even fully recognised, were lifted at that point.
Following the birth, I was wheeled up to Intensive Care, Philip by my side. Our new daughter wasn’t with me, but I don’t recall either being told where she was going (I found out later that Philip had been told she would need to go to the Special Care Nursery) or wondering where she was. I remember it just seemed logical to me that she wasn’t with me, perhaps because everything was so medically oriented at the time. Actually, I don’t think that I was really thinking about much at all, beyond the moment and what people were telling me to do.
When I was first admitted to ICU, I had inflating pressure “boots” fitted, to help prevent Deep Vein Thrombosis. I was also attached to a blood-pressure monitoring machine and there were tubes everywhere. During the night, I was surprised by the lack of pain I felt; I didn’t realise that I was receiving pain-killers via a drip. Staff members continually asked me if my pain levels were okay and I remember wondering what the big deal was in regard to pain (boy was that going to change soon!).
Once I was settled in ICU, Philip went down to see Alyciana in the Special Care Nursery and came back with two Polaroid photos of her that the staff there had taken. He then rang my parents with the news that they were grandparents. They were rather concerned when they heard that I was in ICU and I can only imagine how they must have felt upon hearing those words. Later, a nurse let me use the ICU cord-less phone to ring them personally and let them know I was all right.
I spent most of the night in a kind of surreal half-asleep, half-awake state, with staff members monitoring me every 20-30 minutes. During the night, I sometimes felt a brief moment of fear because I couldn’t feel the baby moving. I’d then remember that I’d already had her and would really miss her.
The following morning, the head of the Special Care Nursery surprised me by wheeling in Alyciana to see me. Philip and I both held Alyciana and had photos taken and then Philip fed her some milk, from the test tube that ran into the tube in her nose. I was a bit shocked to see her with a tube down her nose. I don’t know whether Philip had mentioned this or not the night before, but I was unprepared either way.
Later that day, I was transferred to the maternity ward. Alyciana and I spent a total of nine nights in hospital, with Alyciana in the Special Care Nursery for the first seven nights. I found the whole experience of having a baby in the SCN, even for such a relatively short time, very emotionally and physically draining. Although, at six pounds, 13 ounces, Alyciana had no health issues, she had no energy to breastfeed initially. Once we began the breastfeeding sessions, it was a matter of counting every second that she stayed on the breast, desperately willing her to keep going, and feeling really disappointed if she fell asleep or just struggled at a particular feed.
Alyciana would have a “good” feed and I would be ecstatic at her progress, then later she would have a “bad” feed and I would feel devastated. I often felt as if she would never make it home out of the SCN. It sounds ridiculous now, but I just couldn’t imagine her consistently feeding well enough to be allowed home. I remember that one midwife on the ward told me to prepare myself for going home without Alyciana. The thought hadn’t even crossed my mind until that moment, and I just felt totally devastated. Later, something would happen to make me think this worst-case-scenario wouldn’t eventuate and so I’d feel happy again. It was an emotional roller-coaster. In the end, Alyciana and I were able to leave hospital together. I’m not sure how I would have coped if I’d had to leave her behind, as so many other families are forced to do.
It is now over three years since my experience with pre-eclampsia, and Alyciana is a happy, healthy and highly spirited child. She is our little miracle. I know, though, that I will never forget the emotions surrounding her birth. When I was in hospital and feeling much better, my obstetrician looked at me and said: “We brought you back from the brink of death”. She was right and I will be forever grateful that I just happened to have that routine obstetrician’s appointment that day and that I had such a good obstetrician. The impact of the situation really hit me when I left the hospital and, for months, I felt a huge sense that Alyciana and I had cheated death and something was going to happen to one of us. Pre-eclampsia leaves a legacy in so many ways.
Our family was one of the incredibly lucky ones. I think about the tremendous sadness that pre-eclampsia brings to so many people and know that a cure just has to be found.
Philip and I would like to dedicate our story to everyone who has been affected by pre-eclampsia and to thank all those who strive to raise awareness of this devastating condition and those who dedicate their lives to finding a cure.
Ashleigh Alvarez’s Story
My husband and I had been trying to fall pregnant for at least a year so when it finally happened we were over the moon so much so that I took 3 home pregnancy tests and went to see my doctor just to confirm it was really true.
The pregnancy was going well with no morning sickness I felt really well. All my check ups went according to plan. Around 32 weeks I did start to notice some swelling in my feet and my right hand. I was actually told I had carpal tunnel syndrome in my hand and was told to strap it up and a massage every now and again would help circulate the blood flow. I had taken the day off work for my 36 week check up and planned to get that out of the way and then go for a bit of last minute shop with my mother. I had had a headache for the last day or two that I just couldn’t shake but didn’t think anything of it as I suffered migraines and sinus all my life. I didn’t know having a headache was such a bad thing.
They did the usual blood pressure check etc and he then asked me to go and sit back in the waiting room as he thought it was a little high and wanted to check it again. So he came and grabbed me after about an hour and took it again, it was still high and he then asked for another urine sample. This also showed some evidence of protein. There was to be no shopping that day, as we were asked to go straight up stairs.
They hooked me up to the machines, took a blood and urine sample. And once again after about 3 hours they told me they were a little worried about my blood pressure and would like to keep me in overnight. They took my mother outside where they explained to her the danger I was in and that they suspected I had pre-eclampsia. Nothing was mentioned to me as they didn’t want to worry me and cause my blood pressure to escalate.
They got me comfortable and I rang my husband who rushed to the hospital from work. I was given a 4 litre bottle which I was asked to collect urine in over the next 24hrs. The next morning I was given an ultrasound they asked me how far along I thought I was and I explained I was at 36 weeks, my due date was correct as my periods were like clockwork. They weren’t happy with this result so booked me into another hospital for a second ultrasound opinion.
At this booking they showed us the screen and the fact that the umbilical cord was dying and we could see this as it should be red with allot of blood flow and mine was black with the occasional red bit flowing through. We were sent back to our hospital and late that afternoon a team of doctors came in to see us. We were told that they weren’t happy with the results that they were still waiting for some other results and I was to take it easy for now, they would operate on Monday.
My husband had a big day the next day so I sent him home to enjoy his day and told him to pop in and see me sat evening. This wasn’t to happen. I awoke Sat morning to another team of doctors in my room, they had decided that they were going to operate now; I was given an hour max to phone and get my husband in. As soon as he arrived we were off, from this point on I don’t remember much at all, from here on in everything happened so quickly. I drifted in and out of consciousness but remember seeing my son’s leg as they rushed him off to be resuscitated. Jordan was born at 2.40pm on the 20th Dec, 2003 weighing 1640grams.
That was it for me. I woke up in the delivery room later that night with my husband sitting in a chair in the corner and a nurse by my side. I once again spent the next 12 hours drifting in and out. I was later told my blood pressure was checked every 15mins during the night and that I did at one stage wake up and yell at them to just leave the blood pressure cuff on me what was the point taking it off and putting it back on every 15 mins just leave the damn thing on…..
It was 2 days before I was to see my son Jordan, He was not feeding well and started his life with his feeds at 2mls these did progress over time and we were very excited when he finally got to 15mls.
Christmas Eve was fast approaching and they came to inform me that they suspected Jordan was suffering from NEC (Necrotizing nterocolitis) and needed to be transferred to the Royal Women’s Hospital straight away, they had arranged for a bed for me as I still was suffering the affects of high blood pressure and they wanted to keep an eye on me. Once we got there Jordan was taken to level 2 care and I was given one of the only beds available. This is the moment it all came crashing down for me. A social worker was sent in to comfort me but all I wanted to do was cry, this was all too much I had a very sick baby who I was yet to hold and I was in a hospital bed 2 floors away from him. I just wanted to go home and die in the comfort of my own bed.
After some talk they decided to let me go home. About 3 days later they happily told us that Jordan did NOT have NEC and was feeding well enough to go back to our local hospital. I was finally able to hold him though the thought terrified me, he was just so tiny I didn’t want to break him and all the tubes and cords scared the crap out of me. But once they placed him in my arms I didn’t want to let him go. He stayed in for a total of 4 weeks and I have never been happier than I was the day we brought him home. He was still tiny but we loved him so much more. He is now a strapping 3.5year old.
We decided to wait until Jordan was at least 2 years old before we tried again as our first experience was so traumatic, but that wasn’t to be as we celebrated Jordan’s first birthday I was feeling very queasy, a test later that day told us that we were pregnant, I will be honest with you I was horrified and extremely upset I cried for hours, I was just not ready to go through all that again, plus I had only been back at work for 4 weeks and the thought of telling everyone at work scared me. But I soon got over the drama and decided to enjoy it, I suffered severe morning or should I say all day and night sickness, I craved KFC and would have eaten it 24 hours a day if my husband had let me.
Everything was well this time around until one Sunday somewhere in my 31st week. I started to get incredible pains in my chest. I started to find it difficult to stand or to take a breath. My husband was out for the afternoon and had rung earlier to tell me his phone was running out of battery if I needed him to call his mate. I took a shower which I thought would make me feel better but it just made it worse so much so that I was almost in the foetal position on the floor. Jordan was tucked safely in bed. I phoned my mother who told me they were on their way over and to phone an ambulance straight away. I tried to call my husband but was having trouble dialling the numbers at this point the phone rang, it was a friend I asked her to phone my husband and she could tell straight away all was not well. Christian met me at the hospital and I was given all sorts of tests and some steroids just in case the baby was to be delivered that night.
I had a very stressful sleep and was told I wouldn’t be going home for awhile. After 3 boring days in hospital I asked if I could go home I had a 1.5year old who was missing mummy. They agreed but I was to return to the hospital every second day for foetal monitoring, blood pressure checks and blood and urine samples. After 4 weeks of this my arms started to look somewhat like a junkies would look, I had reached 36weeks and was extremely tired of the journey back and fourth, We had come to an agreement that if they could get me to 36 weeks they would be happy. So here we were, and I was booked in for the 21st July 2005.
Jett was born flapping his arms about and screaming much to our delight as Jordan didn’t make a sound. Jett weighed 1700grams but seemed to be in a lot better condition that Jordan had been.
My recovery was also a lot better though I did suffer a revolting migraine later that night. Jett stayed in hospital for the same 4 weeks and was also sent home with a clean bill of health. He has just turned 2 and is the funniest little boy I have ever known. To this day the doctors have not given me any explanation as to why we went through this. My husband and I would love to add a girl to our family but we are scared of the thought of doing this all over again. We are going to seek some medical advice this time round. I wouldn’t wish our experience on anyone.
Belen Walsh’s Story
Blair and I were over the moon to find out that I was having our first baby, with the normal morning noon and night sickness, everything was pretty normal. Until I got to about 29 weeks when I started to high blood pressure and swelling everywhere. I was told to start taking it easy and not do as much, being a hairdresser I was on my feet all day so I was told that that didn’t help with the swelling and to go home and rest.
With regular check ups my blood pressure kept climbing higher and at about 32 weeks was over 110/95 and I had protein in my urine. M doctor started me on hypertension tablets and I started seeing him on a weekly bases. By about 38 weeks I was on 6 tablets a day and complete bed rest with no driving, walking to or around our house and to the doctors surgery every second day.
My BP was even higher and I was having more protein in my urine. By 39 weeks I was on ten tablets a day, BP 150/110, protein with a +. I had to go and get an ECHO (heart scan). One day I would go to the doctors and the other to the hospital to get an ECG. After about a fortnight and my whole family getting worried and my BP at 166/126 and protein ++ and our babies heart beat not fixed and out of rhythm as she was going into distress I had an emergency caesarean section on the 16th December 2006 at 4.41pm and our baby girl Daphne Elena was born. Holding her for the first time was overwhelming.
The next day my blood pressure started going down but by the third day it had started to rise again and I was given more tablets to take and by the forth day was sent home. The next day I had the early childhood nurse come and check up on me as I was still not well. The following day when I woke up I was feeling as if nothing was wrong and that I could tackle anything. The nurse come over again and took out my stitches out and said I was much better and probably needed a good nights rest.
On the following day been Saturday 23rd December, one week after my little girl was born and only 2 days til Christmas, I woke up feeling really sick, I had double vision a horrible head ache and all my muscles were hard and I couldn’t move. I new I was going back to the doctors that morning and he had one look at me and sent me straight back to the hospital (thinking I had an infection from the operation).
Back in the maternity ward with doctors I felt safer but them not knowing what was wrong made me start worrying and crying. With them trying to calm me down they sent me to emergency with my baby and my husband and my parents. I was placed on a drip to get more fluid in, after what seemed an hour the head ache was staring to ease and from about then all I can remember was saying to my husband how beautiful and precious our little girl was.
As I have been told, from about that moment I had my first fit (my family was told to wait outside), as I had nurses and doctors helping me. A couple of minutes after my family were allowed back in and before they come in I had my 2nd fit and then my 3rd and final fit. When the doctors thought I was in the clear I had a stroke. I was put in a coma and on life support as I had a brain bleed, my brain was swollen and I was finding it hard to breathe.
I was taken off life support on Christmas day and started coming around that same day. It was about 2 pm before I could see my baby and I started to cry being confused and not know anything about what was going on. I had drips and lines from everywhere in my body and not been able to hold or hug anyone they could only kiss me on the forehead. I was diagnosed with severe eclampsia and slowly there were days when I started getting more energy and was moved from the ICU to the Maternity ward. After about 2 and a half weeks and with regular check ups from a specialist I was allowed home again.
I just feel so lucky to have made it out of this; I have later found out that my case was the first case that our hospital has had in the last 15 years. The doctors say that the same will probably happen again so we will have to think about whether we have more children and find out more about our risks involved. But now 9 months on, I have a beautiful husband who supported me the whole way, a wonderful daughter who makes me get up everyday and the support of my friends and family.
Brooke Dyan Hally
Brooke Dyan Hally
6 June 1991 – 24 July 1992
Brooke, you were so a delight to have in my life, if only for a short time while I tried so hard to keep you, but I knew God desperately wanted you to be one of his “Special Angels”.
Every day you are in my thoughts and prayers, and I live with the knowledge that some day we will be reunited. Look down on us as we look up at you, Til we meet again…
Mummy
Dannielle Holland’s Story
Things were running smoothly at the beginning, and I was living on peppermint tea and anything ginger. Gotta love morning sickness and the cravings!
All through my pregnancy I’d had high blood pressure, but it sat at the top end of the normal range and was posing no risk to the baby at that point. So when my GP took my BP twice and grimaced, I got a little worried. I was around 28 weeks + 6 days and my blood pressure was sitting on 160/90. The doctor rang my ob and scheduled an appointment for the next day, Wed 6th March. I went home with strict instructions to keep off my feet. I went to my ob the next day as planned, and when he took my BP it had risen to 160/100. I was admitted to hospital (which was just across the road from the ob) that afternoon: ‘Do not pass go, do not collect $200’ sort of thing. Brett had to go home and get my things for me. I was on bed rest and observation for at least the next 24 hours.
On the Thursday I begged my ob to let me go home and sleep in my own bed. He let me, as long as I was back by 8am Friday. After numerous urine tests and blood tests I was told that I had Pre-Eclampsia and that I wasn’t going home until the baby was born, be it ten days or to term, which was just over 10 weeks away. We lived in a country town at the time and unless you were 36+ weeks the hospital didn’t want to know you. My ob spent a while ringing Obs in the Liverpool area to find one who would follow through and coordinate my care. I was transferred to a larger hospital later on that night as a precaution. If my baby was coming early, he/she would need Level 3 neonatal care. I was put on blood pressure tablets and sent on a bumpy two-hour ambulance ride.
My BP was checked every few hours and with the arrival of Brett and my Mum, Saturday passed with little boredom. Sunday started much the same way. At around lunchtime I started to get a pain at the bottom of my rib cage. I thought it was nothing more than hunger, ate lunch and went to the courtyard with every one, as it was quiet time in the ward. The pain got worse as the afternoon progressed but I put up with it. Brett decided to stay with me that night, as he worked not far from the hospital. We ate dinner and then settled to look at some boys’ names.
At about 7pm I had Brett call the nurse, as the pain was more intense. My BP had gone up and the tablets weren’t doing anything. My new ob had been phoned and had advised the nursing staff to get me upstairs to the birthing unit for extensive observations and hourly blood tests, to monitor my liver and kidney functions. She arrived at the hospital at around 11pm. The birth of our son was imminent and it was a matter of buying hours. We spoke to the neo-natologist about statistics on survival rates and possible outcomes. It was during this conversation that the ob came in, saying “Time out, time out. Let’s go. We need to get this baby out now!”
It was 2am. My liver and kidneys were failing. I was catheterized due to oedema, and as I was retaining so much fluid, an epidural was my only option for the C-section. I was taken to the OR and at 2.54am on the 11th March 2002, our son Braedon Caleb was born at 30 weeks gestation, weighing 1430grams. He was quickly whisked away as he wasn’t breathing, and was revived using the bag and mask. I was able to have a short nurse of him before he was whisked away and put on CPAP. Chest x-rays were done and RDS was diagnosed. Braedon was on CPAP for three days and received a total of four days oxygen therapy. He developed jaundice and was treated with phototherapy. One of Braedon’s treatments that Brett found very funny was the caffeine he was receiving for the apnoea and bradycardia. I seem to recall a comment to the effect of “Hook me up”.
I was told that with Pre-Eclampsia, once the baby is delivered you start getting better. I didn’t. I went downhill. After many tests I was diagnosed with HELLP syndrome. I was an IC patient in the birthing unit for five days – all this time with the epidural in. In that time I saw Braedon twice. I saw him when he was born, and a couple of days after his birth they wheeled my bed in to see him. I was released from hospital 10 days after Braedon’s arrival and the day after I was released, Braedon was transferred to a hospital closer to home with a Level 2 nursery. We were lucky with him – we had no major setbacks. He just kept going from strength to strength. He was released from hospital on the 18th April.
Braedon is now almost five years old and he is definitely over his early problems. When Braedon was born we lived in one of the coldest climates in NSW. He used to get a lot of respiratory infections, which spread to his inner ears and lungs. He has been hospitalised three times since he came home: firstly to repair an inguinal hernia; the second time with pneumonia; and a third time with a severe ear infection.
When Braedon was almost two years old, Brett applied for a compassionate transfer (he’s a teacher in the State system) to a warmer climate. Even though we had letters from a paediatrician and the early intervention centre, the Education Department initially declined the application. In desperation I took Braedon to Queensland to stay with my parents for the last two weeks in June 2004.
It was the healthiest two weeks of his life to that point. After returning home we went back to the paediatrician and he changed “May benefit from a warmer climate” to “Would benefit from a warmer climate”. Brett got a transfer and we now live just south of the Queensland border. We moved here two years ago, at the beginning of 2005. Braedon has been to the doctor once since we moved, with no more antibiotics or hospitalisations.
Braedon has a few expressive language delays and a few fine motor delays. When he was born we talked with the people who ran the Early Intervention Centre, whom we knew very well, and from an early age he received physiotherapy, then speech therapy when he started talking, and attended their playgroup. In conjunction with this, Braedon has also attended long day care/pre-school, starting with just two days a week and building to four days a week. He’s now in ‘big school’ without holding him back a year and he loves every minute. He’s the smallest in the class but what he lacks in size, he makes up for in attitude.
Since moving, our little family hasn’t looked back. We are currently pregnant with ‘Number 2’, and I am thinking about studying nursing, with an interest in neonatal care. Brett has researched some of the educational needs of premmie kids and we both try and encourage parents through a website that we’re a member of, which is specifically designed for parents of premature children.
Postscript
August 3rd 2007 we welcomed our little princess to the world. Aurora Isabelle was born at midday weighing a mere 669g at 26 weeks gestation. I developed severe Pre-Eclampsia and HELLP Syndrome again. It seems I go against most things written about this condition because I delivered earlier in the 2nd pregnancy instead of going a little further. Aurora was due on the 9/11/2007.
On 14/11/07 at 103 days old we were able to bring her home. Today on 3rd December she has been home nearly 3 weeks and is 3.73kg. I don’t think we’ll be having anymore children.
Elizabeth Andersen
Elizabeth Andersen
31st December, 1995 – 1st January, 1996.
Rest easy, little angel
Fiona Dixon’s Story
Being pregnant with my second baby I was looking forward to embracing my pregnancy and the belly that goes with it. My pregnancy was relatively uneventful and I went to all my regular appointments. I was being cared for by my local hospital’s midwife group as my first pregnancy was classed low risk although I was induced at 40weeks with the onset signs of Toxemia. At that stage this meant little to me but now it means everything.
I spent my time while pregnant at home with my son Mason as it was the last 6months before he went to big school. I did feel unwell with visual disturbances and pain under my ribs but always put it down to ‘being pregnant’ , so I took some time to rest, drink more water and hoped it would pass.
In early January 2006 I went to my midwives appointment as scheduled. I was supposed to have a regular check up and have my glucose test. I was also moving from the area so I was also there to pick up my notes. I had my regular check up and was feeling quite tired due to travelling just a day before and a restless night sleep. The midwife took my BP and quickly asked me to do a urine sample. The midwife took me up to maternity examination room where I was checked by another midwife and also an obstetrician. I was advised I would stay in over night and be monitored.
The hospital started to ask questions about my history and I told them of my mother and how she had a 34 weeker due to kidney problems; they became very interested in this information. I went on to tell them how she ended up on dialysis and in the last few years had just had a kidney transplant. They became increasingly interested and asked for the details of my mother and her doctor. They had all her notes sent to them and the decision was made for me to be sent to a major hospital the next day. I had 2 injections of steroids before being transferred. I think I was told my condition was pre eclampsia then but it is a blur, I didn’t really understand what was happening.
The next day I was sent by road ambulance and spent the next 3 days at the hospital seeing an army of obstetricians, renal doctors and neonates. I became increasingly worse but it was a game of how my welfare was managed apposed to my baby girls. It was decided on the 5th of January on renal’s advice that we should wait the extra day to give the baby girl some extra time. That night I thought my life was going to end. It started with a pain high under my ribs. I was given medication but nothing would stop it, the onset was very fast. Everything felt like it was rushing by as I zoned in and out through the pain, it’s hard to put into words. The midwives looking after me were caught off guard and rushed me to the birthing suit where I was consumed with the pain. Time lapsed between me zoning in and out and the pain being so bad; I didn’t know what was going on around me. I was given endone, pethadine, morphine and magnesium and was stabilized over night.
I was taken to have a c-section early the next morning where I was put under a general anaesthetic and had a main line put in. My daughter was born at 27+5 weighing 861 grams on the 6/1/06. She was admitted to NICU and I was taken to ICU where I continued to be hypertensive. I was monitored and became stable under the excellent care of the hospital. I spent 2 days in ICU and have little recollection of what went on. My husband Adrian tells me I desperately wanted to see my baby girl but the medical team didn’t want to risk me going if I was not well enough. I was finally moved to delivery for the next 24hours. I remained on BP medication during my time in hospital.
The very first time I was wheeled in on my bed to see Airlie was a surreal moment. Sarah McLachaln’s Angels was playing in the NICU and I just remember thinking this tiny one was mine. I spent a total of 6 days in hospital after Airlie was born. I stayed on BP meds for a week after leaving maternity and when I went for check up with the renal specialist 3-4months later, there was no evidence at all that I had even suffered from PE or HELLP syndrome. Airlie spent 8 weeks in hospital.
I count myself as one of the lucky ones. To have walked away has made me feel incredibly fortunate. I have shed many tears for those babies who have been lost due to these conditions. It is not acceptable to have this happening and I don’t want my daughter to face this if she chooses to have children. Writing this has been incredibly hard since I don’t remember much of it. Thinking back brings back the uneasy feelings of how scared I felt and how out of control it really was. We can all chose to move on and we can all chose to live our lives. But we also chose to teach others of the symptoms so they understand the signs and get help.
Airlie is now an amazing girl of 19 months (16months corrected). I feel she was given to me as a life lesson, a gift to help others. The past babies lost to this won’t be taken in vain. Airlie and I promise we will do everything we can to provide more people with the information we should be all receiving.
Airlie Fae 27+5 due to PE and HELLPS 861grams
16 months (13 corrected) April 2007
Jake
Jake (18/11/13 – 03/02/14)
Our little Jake – you were born to early to save my life. You fought so, so hard little man.
Words can not show how much we all miss you every second of every day.
Love now and until we meet again Mummy, Daddy and big brother Zac.
Jayden Luke Thomson
Jayden Luke Thomson
06 March – 12 May 2006
We miss you, Little Man.
For 67 days you battled like a trooper.
Those special nurses fell in love with you as much as we did.
And all our photos don’t seem enough anymore…
Remembering you dearly and loving you forever,
Mummy & Daddy xxxxx
Jaynee Charlston’s Story
Our son Samuel was born on the 23rd of March at 8.14pm at 23 weeks. The following day we issued the below statement to family and close friends:
“Samuel arrived sound asleep and very peacefully at 8.14 last night. Troy and I spent the night with him. We are ok and will be ready for visitors tomorrow. Love, us.”
Bub made his presence felt very early on in the pregnancy. I suffered morning and evening sickness throughout the entire pregnancy. I gained weight quickly and became a little alarmed when my hands showed signs of oedema. I could no longer wear my ring. Concerned about my vomiting and weight gain I spoke to my GP. I was assured that everything I was experiencing was normal.
At 19 weeks we flew to Canberra to attend a wedding. Canberra was incredibly hot and over the weekend my feet and ankles swelled to the point at which I could not fit into my shoes! The swelling continued when we returned home. I consulted my pregnancy books and read about fluid retention. While reading about fluid retention we also read about Pre-eclampsia. We discarded what we read as the books said that it was something associated with the late stages of pregnancy. I continued with work. As a teacher I was on my feet all day. By the end of the working day I was exhausted.
On the 9th March we had a scan. Bub was simply moving too much for clear pictures of some of his vital organs to be made. Bub refused to settle so an additional scan was booked for Wednesday the 14th of March. Troy and I were not concerned, as from our point of view Bub was simply very active, if not a little uncooperative.
On the 13th of March, Tuesday, we had a routine check-up. I was visibly bloated. My blood pressure was noted as being high and we were immediately referred to the Pregnancy Assessment Centre. For six hours I was monitored. At 11pm that night I was admitted to the maternity ward. Troy was incredibly calm during this whole time. I spent the night in a worried state and slept very little, as I did not know what was happening.
The next morning we had a scheduled scan to attend. We found Bub’s movements very reassuring. The scans revealed Bub had two rather than three arteries in his umbilical card. I was informed that his growth would be restricted because of this. The doctor spoke to me about my blood pressure, evidence of protein in my urine and placental insufficiency. He said that I would need to be monitored for the remainder of pregnancy but as I was only 22 weeks into my pregnancy, things should be fine for a while. The doctor used the words ‘High Risk Pregnancy’. I was allowed to go home provided that I returned to the hospital the following morning.
The next morning Troy returned to work and I returned to hospital. My protein output and blood pressure was monitored. I had a very kind nurse, Anne, who talked me through what was happening. I was told the likelihood of making it to 30 weeks gestation was unlikely. At this point I was scheduled to return to the hospital every Wednesday for tests and monitoring. It was only when I was standing in the lift by myself that the tears came. I walked around town aimlessly looking at baby clothes and wondering what we needed. I bought Samuel a couple of hats to wear in the neonatal ward, because that was the reality of what I thought we were facing. Troy was at work. I wanted to talk to him but I waited. In the meantime a close friend rang and I just burst into tears.
The next week passed quickly. Most evenings I would vomit until I had nothing left in me. I also developed sharp pains under my right shoulder blade. Bub was very active. It was during this week that Troy felts Bub’s kicks. I packed a bag for me and a bag for Bub. On the 21st of March, Wednesday, we returned to hospital. A scan showed that Bub was growing well. I was absolutely shocked when I was told that I was not to return to work until Bub was born. I was 23 weeks pregnant!
The doctor advised us that we should visit the neonatal ward and he made arrangements for this. We left the hospital in a state of shock. I called work and said I would not be returning. We had only been at home for 30 minutes when the hospital rang and said I needed to return immediately. We returned to the hospital. It was at this point that we were told that Bub and I were at risk. My blood pressure was incredibly high and I had a protein plus of six. At this point, bloods were taken for further tests. My platelets were dropping and my kidneys and liver were showing signs of breakdown.
We meet the neonatal specialist who spoke to us about our immediate birthing options. He handed us an A4 page of survival rates of premature babies and asked us to read it and consider what we wanted. We decided on a C-section – anything to give Bub a chance. However we made the decision that, if Bub was not breathing, we would not resuscitate him. At this point I sat on the bed and cried. The doctor came in and spoke to us. My platelets were continuing to drop and I was also showing signs of hyperreflexia. We were moved to a birthing suite.
I was inserted with a catheter to monitor protein output, given Labetalol and Hydralizine in IV drips to control and stabilise my blood pressure, and also Magnesium Sulphate to prevent brain seizures. I was hooked up to drips and was unable to move. Compression stockings and some sort of machine were also attached to my legs. I was also injected with steroids to help Bub’s lungs mature over the next 24 hours. My blood was tested every three hours as the doctors focused on the best way to manage me. The night came and I slept restlessly. Troy slept in the hospital. He stayed with me the entire time and kept family and friends updated as to what was happening.
The next morning things had not changed. I was taken to the anaesthetist where a central line was inserted. Unbeknown to me, Troy was talking to the neonatal specialist who informed Troy that Bub and I were in serious danger and a C-section could not be performed as my blood was not clotting. Essentially the doctor told Troy that they had to act now to ensure my survival. We had no choice but to proceed with a vaginal birth. Despite all the talks with the doctors I still thought that Bub was going to be okay. I was induced with prostaglandin. I remember saying to the midwife, “I am not ready for this”. Our midwife, Jeanette, was amazing. She stayed with us the entire time and provided a great deal of care, understanding and reassurance. She even made us laugh at times. Even today Troy and I do not know how to thank her and the staff.
The rest of the day was a blur. I became a little panicked when staff from the ICU introduced themselves. It was at this point that I thought for the first time that Bub was not going to make it. I was given an epidural. It was incredibly painful and frustrating. I could feel the doctor poking and prodding between my vertebras. It took five attempts to get it in as I was so swollen. The night passed in a blur of tears and conversations.
Friday arrived. Contractions began mid-afternoon. At 7pm my waters broke. Troy held me for the entire labour. Samuel arrived at 8.14 and the midwife gently said, “Jaynee and Troy, Samuel is not breathing”. The midwife bought Samuel over. He was perfect in every sense. Troy held and bathed him. He had such striking features – Troy’s nose, lips, feet, ears and hairline and my chin. I was exhausted after Samuel’s birth and ready to give in to sleep, however my placenta had not separated and was posing a real problem. The doctor was concerned that I may begin to bleed internally. I was given morphine and gas and the placenta was removed manually.
The hardest moment was the next morning when Troy and I farewelled Samuel. Watching Troy hold Samuel and saying, “I wish I only got to know you better”, was heartbreaking. I spent six days in hospital. When it was time to leave our doctor sat down with us and congratulated me on the fact that I had survived and said that he wished that things could have been different for us. He also explained that Pre-eclampsia will be likely to re-occur in future pregnancies.
It has been 12 weeks since Samuel’s birth. We miss Samuel and take comfort in the knowledge that he would have been so loved. Not just by us, but by our extended family and friends. The notice that we placed in the paper said it all:
‘Much loved son of Jaynee and Troy. Perfect, longed for and painfully missed.’
There is a lot more to our story, as there is for anyone that has experienced Pre-eclampsia and HELLP syndrome and the loss of a child.
Julie Oliver’s Story
My daughter Claire is nearly six and I had a fairly trouble free pregnancy. I however began to put on far too much weight and my liver enzyme went up, no blood pressure issue, headaches or any other symptoms and my doctor induced me at 38 weeks. I had a very healthy 4.050 kg baby. Afterwards my liver was re-checked and I was diagnosed with fatty liver. After lifestyle changes, this was reversed and I was able to go into my next pregnancy with a ‘clean’ liver.
My next pregnancy whilst always feeling in good health was a completely different story. My weight once again crept up at week 27 and I had my test for diabetes. As I sat at the doctors desk she looked at me and said “I think we will run some liver function test too just to be sure”, If she hadn’t made that decision I would more than likely not be here today. I was diagnosed with gestational diabetes (which at the time I thought was the worst thing in the world) but had put myself on a very strict liver friendly eating plan which limited bad food so I could maintain my blood sugar levels. The doctor called me back into her rooms and told me that my liver function was abnormal and that she was sending me for more blood test. They then rose again.
She then sent me to a liver specialist firstly, I also had a re-occurring every second day blood test script and I was to go to the hospital every second day for the baby to be put on the monitor. All this time I felt fine, in fact never felt better. I had dropped some fat from the healthy eating, my diabetes was under control, I had plenty of energy and I couldn’t understand what all the fuss was about.
At week 30 my results were getting worse and worse and the doctor told me that I would be being monitored and not to go too far from the house and to stop work completely. By week 31 they decided I needed to be admitted to hospital to keep me under observation. In this whole time I never had one symptom, except for what came out in the blood test.
My doctor came into my room and told my husband and me that there was no choice but we had to deliver the baby the next day as I was heading for liver shut down. My liver tests which should be about 40 were 960.
We had David the next day at 31 weeks and 5 days gestation. We were very lucky as he was a healthy 2.085kgs. He had to stay in the Special care nursery for a month before we could take him home which just breaks your heart. They put in the recovery ward for 24 hours to monitor me and I was unable to see my baby at that time. My wonderful husband kept running back and forward with photos which helped enormously.
When David was 3 days old I had a major nose bleed, a blinding headache and developed swollen ankles. These were the only symptoms that told me I was sick and they went away after a few days. My boy is a year old now and you would never now to look at him his start to life.
HELLP Syndrome is an insidious disease that has no rhyme or reason and if I can assist one person in the future with donations towards research then that is money well spent.
Kathleen & Joe Conway’s Story
Trust your instincts …
Joe and I were very happy to hear that I was pregnant with our first child. As a Type 1 diabetic (I was not informed that diabetes was a risk factor for pre-eclampsia), it had taken a lot of hard work and preparation to get my sugar levels down to the recommended level before conceiving.
Joe and I were recommended an obstetrician specialising in high risk at a hospital (only as a precaution!), which meant three-weekly appointments and a 45-minute to one-hour journey through the city throughout the entire pregnancy. With that, we felt at ease that all the bases were covered and we were in the best of care. I also had a family history of Preeclampsia, with two out of my three sisters having it, however, it is only afterwards that I realised the significance of this history.
The pregnancy went beautifully with minimal morning sickness, stable sugars with an HB1c of 5.1mmol/L by the first trimester. At 20 weeks gestation I had my routine scan, which showed that alongside the good diabetic control I was having a big but healthy 90th percentile baby, which is typical of some women in our family anyway.
From week 26 onwards, things started to change. For me, it all began with a nightmare migraine, which lasted four days. The most excruciating pain was on the right side of my head above the right temple. When I was a teenager I suffered from migraines, but this one felt much more intense, in one area of my head – the right side. I could literally feel and hear the fluid in my head painfully going from one side of my head to the other when I changed sides when lying down. On day three of the migraine, Joe took me in to hospital for my scheduled appointment with my high-risk obstetrician and endocrinologist, but my obstetrician was sick that day and my usual endocrinologist was going on annual leave. I was very emotional and in a lot of pain. I was told that if the migraine persisted for another two days or got worse, to come back in.
On day four of the migraine it eased, with huge relief, but I did start to notice fluid gradually increasing in my hands and feet. So much so that my wedding rings were permanently off and shoes were becoming tight to wear. My hands were very tight and it was painful to grip things, especially in the evening and morning. I had also lost my ability to feel my hypos (low blood sugar) and my insulin requirements had tripled from week 26 to week 30. As a diabetic, you need to be quite in tune with what’s going on with your body. I had to record my sugars and food intake very diligently and by this time two to three hourly blood checks were necessary. Also, my heartburn became very painful and Gaviscon and Zantac became my best friends.
There were about seven to eight weeks during this time that my high-risk obstetrician was away for many reasons, and as a result I had seen a different obstetrician every time. By week 30 – 31, I really needed to see my regular obstetrician, and I did. Something was not right! At this appointment my blood pressure was checked and was at the higher end of normal limits, and my urine was also checked at this point. I was told to see him again in one week so he could watch me more closely and, if he was away from the hospital, to make an appointment at the other rooms where he worked. The obstetrician said that: “I looked like a 38-week pregnant women at 30-31 weeks”, and that my hands are sore due to ‘carpel tunnel’. No mention of Preeclampsia.
The following week at my appointment, the same obstetrician introduced himself to me as if he had never met me! I said, “I’m your regular patient”. By this time my shoes did not fit, and I was not well, but I was asked if I had any upper gastric pain. I said I didn’t, and then I saw the obstetrician write ‘WELL’ on my file. Clearly this obstetrician was not as concerned as I was. People who knew me were becoming worried about the amount of fluid I had taken on board. I was told that weight checks were not routine anymore but I was keeping track anyway during pregnancy and I was about 20 kilograms heavier by 30-31 weeks. I was told that it was all apparently normal to put fluid on after each appointment with a different obstetrician. I felt that had I seen the same doctor consistently during the pregnancy, they too would have noticed a lot sooner. The system was inconsistent.
At 32 weeks I took control of the steering wheel before my wheels fell off and rang my obstetrician’s after hours number on a weekend, for the fourth time that month – feeling like a right old pain for doing so!
By now, it wasn’t just the fluid, the hypo unawareness, carpel tunnel, heartburn, mild headache, unstable pelvis, no shoes to wear, shortness of breath and insulin resistance troubling me, it was a persistent ‘itchy’ rash on my face and spreading around my body. I had an extremely ‘sick’ feeling, lack of urine, and what urine I had was dark in colour and hot. My eyes were hard to find when I looked in the mirror in the morning, but the swelling went down from my face as the day got on.
The on-call obstetrician asked if I had “upper gastric pain” – “NO!”: “Headache?” – “Slight headache”. Then he asked if I could get my blood pressure checked by my local doctor – my instincts screamed at me not to take no for an answer! I ended up saying, “Look, I just feel REALLY unwell and feel that I need to be properly checked by a professional in obstetrics, not general medicine.” “Ok,” he said. “Come in, and I’ll check you.” And with that I went straight into hospital. He had listened to me.
After some checks, I was told to stay in hospital, as something was ‘not quite right’. The initial diagnosis of ‘itchy rash’ was quite amusing to some nurses. A blood test showed that my liver proteins were slightly elevated and that there was protein in my urine. My blood pressure was ‘a bit’ high. The next morning, I was told I had ‘hepatitis’ by a nurse, and I had to change wards so I could be isolated and have my own bathroom – for what reason, to this day, I do not know. By Monday, my regular obstetrician was back and said that it was ‘most likely Pre-Eclampsia”, and that it would be best to deliver that Wednesday by C-section once I had had two doses of Cortisone steroids to help the baby’s breathing.
By this time, I was starting to get a succession of ‘hypos’ (low sugars) and on again/off again back pain. Later that night, I noticed that my skin was starting to change colour. It became a soft pale yellow. I had very hot tiny amounts of urine to no urine at all and increased swelling and nausea and a dreadful feeling. At about 3am (Tuesday morning), I had major pain in my back as if someone was plucking my spinal cords like a guitar. I buzzed for a nurse! It felt like an eternity before one came. I was unable to move, the pain was too much. The nurse took a CTG and it was only then that I noticed tenderness in my upper gastric area, because the belt was touching it. My baby had moved to sideways position and had not moved much since – I was told by a nurse I was going into labour.
The obstetrician was called; the CTG was abnormal and critical. Within 30 minutes, I was in surgery! Due to the gross excess fluid, the epidural failed and I had to be given a general anaesthetic to get my baby out! Harrison was born at 32.6 weeks gestation. He was intubated and remained in ICU for a couple of days, given strong antibiotics and was then well enough to go to the Special Care nursery.
In the recovery room, I could not breathe! The fluid had blocked my windpipe (larynx and pharyngeal oedema) and I had to be intubated to save my life. I was later transferred to another hospital’s ICU and placed in an induced coma. I had gone into acute renal failure; my liver was very sick and I was very lucky to be alive. The obstetrician (on-call) that initially admitted me said, “It was the most aggressive form of Preeclampsia” he had ever seen in his career, and that he would call it HELLP syndrome, even though it was not a classic case of HELLP (as in my platelet levels did not get too low and haemorrhage).
My regular obstetrician mentioned nothing of this and the discharge letter diagnosis was ‘very severe Preeclampsia’. This discharge letter also had several errors in it that were not clerical but informational – so I tend to take more notice of the other obstetrician’s opinion due to the fact that he gained my trust by listening to me. If I have another baby later on, I will need that accurate diagnosis, as my life will depend on it. As I write this, it is 11 months on, and this experience is still fresh in my memory. Harrison’s recovery was up and down in the first few weeks, with a couple of scares that rectified, thankfully! He soldiered on, and is now a very healthy happy 11-month-old.
Joe went through the shock of it all and the recovery affected him too, in the form of exhaustion (physical and emotional). For weeks leading up to the birth and for the weeks after the birth he was also my carer and working full-time. There was a lot of day-to-day stuff that I just physically could not do. Try to get around with bad hands and knees and no shoes, lethargy, breathlessness, leaking skin and diabetes 2-3 hourly checks, and you might gather the weight of worry Joe would have had on his shoulders during and after a hard day at work – and multiply this by months. We climbed that mountain in high altitude, and are now finally beginning to enjoy the gradual increase of oxygen on the decline, starting to take in the beauty of what we have been through. Plough through it, it does get better.
Recovery
It took two and a half months before for my blood pressure came down and I was given two types of medication, which was gradually reduced to no medication at all. Fluid drained away from my head and eventually from my feet. By week four post-natal, I could fit into my shoes again and my chicken legs were back – what a load off! But I still have the stretch marks in my legs and knees, chest and arms, but surprisingly not my belly. I don’t know exactly how much I weighed after birth but I was loosing 2-3 litres of urine a day for the first couple of weeks, which slowly tapered off to normal by the fourth week. There was absolutely no bend in my knees for two weeks after birth and the bed sheets and pyjamas were very wet from my skin leaking so much. My kidneys and liver started to kick back into work in ICU and at about eight months after Harrison was born my kidney and liver bloods have come back to pre-pregnancy levels once again.
At about 2-4 months post-natal, I was still very fatigued and experiencing ‘heart palpitations’, nausea, shortness of breath and dizziness! After a month or so, it went away and nothing significant showed up in the checks that I had done. There was also a lot of pain in my knees and right shoulder and I could not fully kneel or use this shoulder for some time after. Recovery has been very difficult and if you do not have strong support it is even harder, and you can quite often feel guilty because you have to really look after yourself in recovering and also really look after your baby. It can be a juggling, all-consuming thing at times, but I guess it took eight months before I could remotely feel a little like ‘myself’ again. This may be the case for mums in general also, but the emotional and physical processing of the shock of the Preeclampsia experience may take much longer.
To have the emotional support of a friend or health professional, to listen to you or to simply let it out to, is invaluable during the recovery time – even if you think you don’t need it! If you know someone that has recently suffered Preeclampsia, please cook them a meal (provided you can cook), offer a hand – domestic, take a bunch of flowers over, listen, check in occasionally, offer a lift to the many appointments they will need to have – as they may not be able to drive for some time afterwards. Ask them what they would find helpful if you are unsure. However small a help you might think it is, it is a HUGE help to that person, and worth doing.
When I was transferred back to the same hospital as Harrison, I got to meet him for the first time. He was the biggest but the second youngest of the other babies in Special Care. We are very grateful to have a positive outcome after such a ‘hell-ride’. We now know the ‘other’ – not so talked about — side of pregnancy and have met and read about many parents who have endured a lot more with not so positive outcomes. Joe and I will be eternally grateful that we did have a positive outcome regardless of the journey, and we realise just a snippet of how much strength and courage it would take to move forward without that positive outcome – to those in that situation, our prayers and thoughts go out to you.
Thank you to AAPEC and everyone involved in it, and the Preeclampsia awareness campaign.
PS. Written by Kathleen, edited by Joe and refluxed on by Harrison xx.
Liam Jordan Van der Hoek’s Story
Liam Jordan Van der Hoek’s Story
Born sleeping January 16th 2005
Your baby sister Jorja survived severe early onset Preeclampsia and extreme premature birth because of your loving protection, and the lessons we learnt after we lost you, our irreplaceable, precious and adored first born.
You are loved beyond words, and missed beyond measure.
Loved for a lifetime, and beyond, by Mummy, Daddy, baby sister Jorja and our family and friends.
Liam Mark Pyke
Liam Mark Pyke 16/02/06
Our little angel for ever,
Love your Mum & Dad
Phoebe’s Story
At 28 weeks pregnant, I blissfully loved every moment of pregnancy. Having had 2 previous miscarriages, I was determined not to take any moment of the experience for granted.
There was nothing I treasured more than holding my hand to my belly and feeling my baby move. It was in these moments that I felt the most connected with my child. I would hold my hand in place, feeling his tiny movements, and talk to him. “Mummy’s right here, my darling” I would say. “Mummy’s got you”.
There was no way I could have known that my pregnancy was destined to come to an abrupt end.
At about 4am on the 30th December 2016, I woke up experiencing moderate pain in my upper abdomen. The pain, whilst not severe, was uncomfortable enough that I couldn’t get back to sleep. I tried changing positions, pacing around the house and having a shower but nothing I did could ease the pain.
After a few hours I woke up my husband and we decided to go to the GP. As we drove to the clinic and waited in the car park until it opened, I remember worrying that they were going to think that I was overreacting.
I described my abdominal pain to the unfamiliar GP and she checked my blood pressure, which was normal. She informed me that the pain was likely indigestion and I was told to go home and rest.
And yet something didn’t feel right. I couldn’t shake a sense of foreboding.
Robyn Harries’s Story
Before I start my story I would like to take this opportunity to thank AAPEC for publishing my account. I got my Mum to write this letter as I dictate:
My daughter, Nicole, is now seventeen years old. This is the story of her birth. The due date was 3.9.1988; she did not arrive until 9.9.88 when the doctor induced the birth. Six weeks previously Pre-eclampsia was diagnosed, but nothing was done by the doctor. He assured me I was a fit girl; even though my feet, hands and face were extremely swollen, he said everything would be alright. How wrong can one be!
I was a school teacher – twenty seven years of age – and had left teaching at the end of June to allow plenty of time for relaxation before the birth. After being admitted to hospital, I was induced and sent to a waiting room. I was very sick – vomiting violently – and I requested to go to the delivery room. The doctor was summoned and, upon detecting that the baby was in distress, decided to use forceps and an epidural to lower my blood pressure; unbeknown to me the blood pressure was climbing at an alarming rate and had reached 210/114. I complained of a severe headache. To lower my blood pressure, Pethadine and Nalium were administered. My husband was sent home and I was to have rest. During the afternoon, apparently I had lapsed into a coma and was taken to Intensive Care. The resident doctor was called, and he administered Narcan to reverse the other drugs
Later that evening I was rushed to Prince of Wales Hospital with kidney failure and my liver failing, also still unconscious and deteriorating rapidly. I had had a Cerebral Haemorrhage and a second bleed in the brain stem. A brilliant surgeon, operated in the early hours of the following morning.
I was given no hope of survival, only hours to live. But I survived, thanks to the wonderful nursing under a wonderful Doctor. I was in the Intensive Care Unit for several weeks, and then transferred to Prince Henry Hospital where I lay, still in a coma, for approximately six weeks. I was in Prince Henry Hospital for a further seven months, during which time I had Physio, Occupational and Speech Therapies.
This was a very traumatic era in my life as I had to learn everything again. These bleeds have left me unable to walk, no balance, my right hand badly affected; my eyes, because of the second bleed, don’t focus, and jump constantly – one vertically and one horizontally. As you can imagine, we have exhausted every avenue available, and seventeen years later I am still persevering to regain my life, if at all possible.
I hope my story is helpful to others in similar situations.
Ryan Whittington
In loving memory of baby Ryan Whittington 16.09.05 – 19.09.05
Perhaps my time seemed all too brief,
Don’t lengthen it now with undue grief.
Lift up your heart and share with me,
God wanted me now, he set me free.
We love you from mum & dad, Liam & Lora
Theresa Fuller’s Story
It was February 2001 when my third healthy little girl Natalie was born. Being pregnant was the healthiest time of my life I always felt well never had any problems with protein or high blood pressure. I was home on the 6th post natal day with Steven, Ashleigh Lauren and Natalie, it was a sunny day, and we took the girls for a walk to the local milk bar and came home and had lunch. The out patient nurse had been that morning to check my blood pressure and the baby, everything was fine.
Later in the afternoon I was sitting outside in the sunshine with my brother and his family when I felt an extremely bad headache develop. I told Jodie, my sister in law and we went inside and I took some medication to try to relieve it. It seemed nothing would help the headache and I even put my sunglasses on inside as I found the light quite irritating. I was very annoyed at developing a headache and reluctantly took myself off to bed. Steve woke me to feed Natalie during the night, I took more Panadol than I should have but nothing appeared to settle this headache.
When I awoke Monday morning Steve started our usual routine of getting Ashleigh ready for school, when I finally got out of bed I took myself to the bathroom where I noticed that I could not see properly. I had lost my peripheral vision. I became very scared and emotional at this point. I told Steve about my vision and being his cool and calm self he said that he would take Ashleigh to school and then we would go to our GP. I remember sitting in the waiting room for one of the doctors for what seemed like ages, all the time I had this all consuming headache which by this stage had reduced me to tears.
Upon seeing the Doctor, she took my blood pressure and did urine tests and advised Steve to take me to the hospital straight away. Just prior to leaving she shone her small light in my eyes to check my pupils, at this point I am most annoyed thinking this doctor is over the top, I cannot believe she is making me go to hospital when all I want is something to get rid of this headache. I managed to sit at her desk and call mum asking her to meet us at the hospital, I hung up and then realised something was wrong, I could see Lauren and Steve and then I fell and alI I thought was ‘NO’, I believed I was dying.
I didn’t realise what was happening but I started fitting. The ambulance was called and I was taken to Monash Medical Centre. It was here that I had several further fits and numerous tests that I thankfully cannot remember. What I do recall saying to a doctor is “can you stop this because all I want to do is raise my children”. I know this time was extremely stressful for Steve, the girls and our extended family.
No one could decide if I needed a neurologist or a gynaecologist, after much testing a questioning it was decided that I had post natal eclampsia. All I can say is, I felt like I had been hit on the head by a truck. My head felt very heavy and I found it difficult to react, even walk. I now know that I was on anti fitting medication which really slowed me down. My daughter was readmitted to hospital with me for bonding and feeding, but in all honesty I was that exhausted and sick I should have just rested. I insisted on my mum sitting with us from 8.00am to 8.00pm so she could do all but feed Natalie anyway. I would not allow anyone other than my family to visit and I felt so sick, this unfortunately upset a few friends.
The medication was very strong and I was quite groggy, I remember one evening trying to feed Natalie and nearly dropping her on the hospital floor, I found this very upsetting. I was given the best of care and attention however I do believe that Natalie should have been cared for at home with my family as I found by morning I was exhausted from lack of sleep which I needed at this point. I am absolutely in love with my three girls and a brief separation at this point would not have affected either of our well being, but when you are vulnerable you tend to do as you are told.
I was finally released from hospital a week later I was very weak and groggy from the anti fitting medication. Steve took control as such, he insisted that we bottle feed Natalie as he and the rest of the family could help feed her. I wasn’t able to be at home alone with the children or bath them by myself for fear of it happening again. I was very lucky that I had many family members and friends who were willing to spend time with us during the day while Steve was at work. I could not drive the car for three months so I had several kind mums from Don Bosco Primary school in Narre Warren help get Ashleigh to and from school. I had weekly then fortnightly visits to my GP.
Unfortunately I developed hepatitis of the liver due to the anti fitting drugs, I realised something else was wrong when I developed a rash all over my body. It was at this point I stopped taking all the medications and started regular blood tests to ensure my liver function was returning to normal. I was very thankful to Steve for insisting that I bottle feed Natalie as I wouldn’t have wanted the worry or the possibility that this had affected her in any way. It took a good 6 months for me to recover from all the different situations I found myself in after the birth of Natalie. I had many doctors all assisting and caring for my wellbeing. I was asked on many occasions if I was depressed, but not once did I feel this way I just felt very lucky to be alive, have three healthy children and a very supportive husband and family.
Toni Williams’s Story
Andrew and I had decided we were going have a baby so I went off the pill after being on it for 10yrs and went to my GP and he said I will ovulate on this day, so Andrew and I tried and I fell pregnant on the first shot.
I had hypertension before I was pregnant so I knew pregnancy may have some complications I was on medication for that which was keeping it under control. All the scans at 11 weeks and 18 weeks were good. I had no morning sickness it was a perfect pregnancy. I went to my GP for the 26 week check up and every thing was good, bp was a little up, not to much. We were in the middle of planning our wedding when the following week at 27 weeks I got a cold, on the Thursday night I noticed my ankles were puffy and Andrew and I both said that can happen in pregnancy and didn’t think much more of it as they went down over night
By the Monday morning I felt really sick so I went to my GP again, he said that I had a chest infection he took my BP it was 180/100, he said that’s too high. He sent me straight to the hospital when I got there I gave them a urine sample it came up with 2 + protein. From then on I went down hill, they told me that if they didn’t take my baby that night I would die within 12 to 24hrs, and that I was in the late stages of Pre-eclampsia.
They hooked me up to the drip with magnesuim and hydrelazine which Ii found out I had a reaction to, I kept vomiting every time they administered it to me. I was rushed from Ballarat hospital to the Mercy for women in Melbourne in a critical condition. Before I was transferred my bp was 206/140 my kidneys had started to shut down, by the time I got to Melbourne my bp was 220/140.
Andrew arrived about 20min after I got there, thanks to my uncle at very short notice taking him down and waiting there all night. I was taken into a delivery room and one of the paediatrician doctor’s came to see me and told me that my baby has an 80-90% survival rate. Ii thought that was pretty good odds, considering my baby was stable on the foetal monitor the whole time. The doctors checked to see if I had gone into labour but I hadn’t so they took me in for an emergency c-section.
At 1.53am 10 hours after going to the GP, my daughter was born weighing 823grams she cried when she was born the doctor’s told us what they were doing with her the whole time, in the operating theatre they intubated her then the next day she was weaned to C-PAP. They took my little girl off to NICU, where I didn’t see her for 2 day, as Ii was in ICU still.
It was hard not being able to see my daughter, to know if she was ok. It made my cry being away from her for those 2 days. The doctor’s told us that she was very small for her G.A and that she was the size of a 25 weeker not 27weeker, so me must have stopped growing for a couple of weeks before she was born.
She spent 26 days on CPAP before breathing on her own with no assistance; she spent 11 weeks in hospital, 6 weeks at the Mercy in Melbourne and 5 weeks in Ballarat before coming home. The Ballarat hospital said that I was one of the worst cases of PE They had seen. I was very scared through all this but I was glad that I had a girl in my situation as even though she was very small she was very strong and fought to stay alive.
I hope me sharing my story helps anyone in my situation and that there is hope.
Zoe & Troy Lee’s Story
I met my sweetheart in March 2003. We had just moved into our house, when I discovered we were pregnant (August 2003). We were so over the moon. I had a very scary start to my first pregnancy.
I was rushed to hospital with terrible pains on my right side. They thought it was an ectopic pregnancy. After a few weeks of weekly scans, we saw Jayden’s heart beat on the screen. After that the pregnancy was a dream. I worked up to 38 weeks, and after 3 days in labour Jayden was born on 7th April 2004 – 2 days before his due date. He was a healthy 3.3kgs and 55cms long. We had a few breastfeeding issues as Jayden was born tongue-tied, but he was just perfect.
Just after Jayden’s first birthday, we were so excited to find out we were pregnant with bub # 2. The first 12 weeks went without a hitch. Then at 14weeks (June 2005) I had some spotting. I took it easy for a few days; I knew something was wrong. I had an ultrasound done, and heard the worst news ever “I’m sorry but your baby has died”. I had a D&C the next day.
At my 6 week post op. check up, I hadn’t had an obvious period, so my doctor did a pregnancy test. It was positive!!! She did bloods, to check that the HCG was rising, and everything was looking good. I had a good pregnancy, lots of morning sickness, but I was just so anxious to get past the first 20 weeks. I’m not sure why I thought 20 weeks was ok, but that’s where I thought I’d be safe.
Just after the new year (Jan 2006), I started to feel funny. I had spots in my eyes, and just felt not right. My blood pressure was up. My doctor suggested I finish work, hoping my blood pressure would go down. The first week I was off work, I was getting worse, and my blood pressure was rising. I was admitted to hospital and put on medication. After a few days my blood pressure was ok, and I was able to go home. After this I had to have 3 ‘day stay’ visits at the hospital each week. I’d go in for the day, where they would do bloods, check my wee and monitor my blood pressure, and do ultrasounds to watch our beautiful baby.
I got to 31 weeks 6 days, when things went bad. My blood pressure was up to 170/105 and I had 4+protien in my wee. They again admitted me to “play with” my medication. I was given some fast acting medication, but it wasn’t working. My blood pressure was at 150/100 and my protein was back down to 2+. Troy left hospital at around 8.30pm, and I tried to get some sleep – very hard when you’re in a 6 bed room full of high risk pregnant women. I dozed off, but woke around 10.30pm with this terrible pain above my ribs. I knew it wasn’t heartburn, and didn’t think it was labour pains. It took me an hour to buzz the nurse, who gave me Mylanta and told me she’d be back soon. After an hour the doctor was called as this pain was getting worse and my blood pressure was on the rise again. The doctor came, did some tests and told me it looked like I had pre-eclampsia, and “we might have to deliver your baby in the morning”.
At 5am on Valentine’s Day, I phoned Troy and told him to get to the hospital right now. The doctor was coming back to see me at 7am. He got to the hospital around 6.45am, just as the theatre nurse came to get me. OMG we were having our baby today. I had had bloods done at 6am, but no doctor had come to speak with me. We got down to the delivery ward, and I was put on all sorts of monitors and had all sorts of tubes put in me. The doctor came and spoke with us, saying I was having our baby today.
She didn’t go into things further, just told me I would be having regular blood tests until they took me to theatre. At around 8.30am, things went crazy. Many doctors and nurses came rushing into the room, and I felt like people were at me from every side. A paediatrician came and spoke to Troy. Next thing I know we are in theatre and I’m having our baby. Isaac was born at 9.52am weighing 1.7kgs. He was taken straight into the NICU.
A few hours after delivery, the doctors come to speak with me and Troy. I was in ICU. They explained to me that I had severe pre-eclampsia and HELLP syndrome. I remember them being there a while, explaining how serious it was, and that I wasn’t yet out of the woods. HELLP syndrome normally gets worse in the first 48 hours after delivery.
Isaac spent the first 6 weeks of his life in hospital, with no major issues. He was out of ICU by day 2. He lost a fair amount of weight, got down to under 1.5kgs, and took a while to get back to his birth weight. He had Jaundice – as do most prems. – and was found to have a double hernia that was operated on one day before he come home from hospital.
He is now 8months old, has 2 teeth, and has just started saying “dada”. We aren’t sure if we will have any more children. Troy is quite nervous of going through having another premature baby, and now knowing the risks of PE and HELLP, it is a little scary. We have 2 beautiful healthy babies.