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.
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.