I’ve already mentioned that I had pre-eclampsia during my first pregnancy. As with Crohn’s, this is a rare and little understood illness. The factors that cause pre-eclampsia are complicated and not fully understood even by the medical community. For example, the only risk factor I had was that it was my first pregnancy (I was not ‘young’ or ‘old’, overweight, nor did I have any family history of the disease).
So this is my way of raising the profile of this disease. If you are pregnant you need to be aware of the symptoms and realise that this could happen to you. I think that was my biggest mistake.
My mother had delivered three girls naturally, going overdue with each of us. The only complicated delivery was me – I was breech and since it was 1982 my mum delivered naturally with only gas and air (respect!!).
I fully expected a normal, boring pregnancy, and anticipated going well overdue just like my mother. Dangerous diseases did not happen to people like me.
As I have outlined in a previous blog entry, I was badly mistaken. From the start of the pregnancy I had terrible diarrhoea, and when morning sickness kicked in at around 7 weeks I became increasingly miserable.
Eventually the morning sickness passed (much later than anyone said it would) and I began to feel something more like normal. In retrospect, I never really felt well at all during the pregnancy. I was determined not to be a wuss, however, and tried to carry on as normal. I was just pregnant, not ill; I was bound to feel a bit tired and sick.
Around 24 weeks my husband and I took a week’s holiday in the south of France, returning to our honeymoon location for a pre-baby treat. I felt much better that week; the nausea almost let up entirely, and I only had to cope with the diarrhoea. I remember being really tired though; we’d walk about half a mile to the beach and I’d have to rest. I struggled with the heat, but again just put it down to being pregnant. I was just one of those unfortunate women who missed out on the second trimester ‘glow’.
The irony is that I worked as a secretary for a Medical College in the department of Obstetrics and Gynaecology. One of my jobs was to type up the exam papers. I knew the symptoms of pre-eclampsia. I knew how dangerous it could be. But I had convinced myself that I was going to have a normal boring pregnancy, so I dismissed several symptoms as part of ordinary pregnancy.
This is the most dangerous aspect of pre-eclampsia, as far as I’m concerned. Each of the symptoms – swelling, nausea, headaches – can all just be attributed to a normal pregnancy.
Looking back I had several symptoms which I should not have ignored, but I kept thinking I was just being a baby and had to put up with feeling a bit unwell; it was worth it to hold my little one at last.
When I was 26 weeks some friends came to stay and we had a day out together. Towards the end of the day we had to climb a long flight of stairs. I remember my husband helping me as I gasped for air, and as waves of nausea swept over me. Our friends went ahead, unaware of how difficult I was finding it. I sat in the pub afterwards, fighting the nausea for about an hour. I never imagined it was anything other than me not coping with pregnancy.
A few days later I went shopping with my mum to buy some things for my hospital stay supposedly in a couple of months’ time. There was a sale on maternity wear and I bought some pyjamas and slippers. I remember feeling disappointed when I had to buy medium slippers when usually my dainty feet need a small. I remembered my aunty swelling up during the last weeks of her pregnancy. I must just be one of those unlucky women who swell up. Surely after the pregnancy I’d be back to my normal, dainty self. As long as I didn’t gain weight in my face I didn’t mind so much.
Alas, the next day I glanced in the mirror and my cheeks and neck looked puffy. I sighed. Never mind – it was worth it to finally be a mum. I could lose some weight after the baby was born.
The day of my twenty-eight week check was sunny. I struggled up the small hill to the hospital, and up the stairs to the outpatient department (determined not to be lazy – I was only pregnant after all). Only three months and this would all be over. I’d finally be a mum.
The midwives checked by blood pressure and urine. A small frown crossed her face.
“I’m afraid we’re going to have to send you to the MAU, love. You’ve got protein in your wee and your blood pressure’s up.”
“Oh, I just climbed two flights of stairs,” I dismissed her concerns. “Can you check it again when I’ve had a chance to sit down?”
The midwife conceded but her face was doubtful. My sister had come to the appointment with me. She was a newly qualified GP, and her expression was worried.
My BP did not go down. I spent a few hours in the MAU. They asked if I had any swelling.
“Not really,” I replied. (In my memory I’m screaming at myself – your slippers don’t fit! Your face is swollen!)
“Any disturbances in your vision?”
“I’ve been seeing some stars for a while; but I often get them anyway. I have quite low blood pressure.”
(Stop dismissing your symptoms!)
I can’t remember if they started treating me right then, but I was sent home and told to come back the next day to be checked.
Over the weekend the midwife visited me at home on the Sunday morning.
“Does this mean I won’t be likely to use the birthing pool?” I asked her anxiously. The look on her face haunts me. She was full of pity – clearly I had no grasp at all on how serious the situation was.
“No. You’ll have to be monitored closely for the delivery,” she said gently. I did not understand that, at this point, no medical professional expected me to get to full term.
She sent me into the hospital and the registrar wanted to keep me in for observation. I had no idea how much danger I and my baby were in, and begged to be sent home. I promised to return if anything changed.
After three days of being monitored daily, I had an awful Wednesday when I hardly felt the baby moving. I called the MAU at 3 a.m. and they suggested I come in to be checked for peace of mind. As I got up I was gripped with an agonising pain in my lower ribs. I’ve never felt pain like it – it felt as if I was being stabbed.
We drove to the hospital, and my husband practically had to carry me to the assessment ward. I was surrounded by the worried faces of doctors and nurses. They gave me some antacids to check whether the pain was actually indigestion; the pain subsided, but I have my doubts over whether it was the antacids which helped. I remember the midwife asking if I’d had any other trouble, and I complained of a bit of pain in my upper back. She got really cross and asked why I hadn’t said anything before. I had no idea that the pain might be significant – I thought it was down to carrying a baby and standing differently.
I didn’t leave the hospital after that. I had blood pressure checks every few hours and my urine was constantly monitored. I was given labetalol, which helps to control blood pressure, to give my baby some more time. We heard conflicting things from doctors and midwives; some said I would surely make it to full term; others said I would do well to get to 33 weeks.
It was a strange time. I don’t remember feeling afraid. I think I detached myself. I kept telling myself that the doctors were just being cautious; it wasn’t really pre-eclampsia. I was worried about the baby more than anything; I didn’t want him to be born so early.
On 21st July 2008 I woke feeling really odd. I knew something was wrong, so I tried to alert my husband (who was faithfully sleeping on a mattress on the floor of my room) but I couldn’t speak. I tried to get his attention, tried to reach the emergency button to call the nurses, but the room was fading. I could hear my husband calling my name, evidently panicked.
When I came to I was surrounded by nurses and doctors. I couldn’t remember my name or where I was. I had no idea how long I had been unconscious or what had happened. As my thoughts slowly gathered I panicked that they had taken the baby, but he was still inside me. I’d only been unconscious for two minutes. My husband said I’d been fitting.
By this point I had had so many blood tests and lines fitted that the anaesthetists were running out of veins. I had to have blood taken from my foot (painful!). I’d also damaged my neck during the fit, and could not get comfortable. I felt truly unwell at this point, and began to sink in my spirits.
It was another three days before the consultant’s felt my body could take no more. It was time to get my son out. He should have had another ten weeks inside me. There was a high chance he could suffer complications from such an early birth – brain haemorrhages are common because the preemie’s tissues are so delicate; he may need intubation, and would certainly be tube fed for the first few weeks. He may end up with severe disabilities and delayed development.
But there was no choice. If he remained inside me either he or I, or most likely both, would die, I of organ failure as my kidneys and heart failed, and he of suffocation as his supply of oxygen was cut off.
Once the decision was made it happened very quickly. I had to sign paperwork acknowledging the risks of surgery (not very reassuring as ‘death’ is listed as a possible complication!) I remember feeling very calm. My biggest worry was for my son, but the doctors were very positive. He was a good size for his dates, and didn’t seem to be suffering because of my condition (sometimes pre-eclampsia can affect the baby’s growth and development, as well as the mother’s health).
I was worried about the spinal anaesthetic, and about having an arterial line placed in my arm as I had been warned it could be painful. My father prayed with me and I was wheeled in. I hardly felt a thing as they injected my spine, and the arterial line was placed painlessly.
My sister stayed with me, whispering the 23rd Psalm in my ear as I was jerked about on the table. Within minutes she said, “he’s out”. I had been warned that he might not cry, but after a few moments a fragile wail sounded in the theatre bringing tears to my eyes. My baby had needed resuscitation but not intubation, and he was well enough after a while to be brought over to me so I could see his tiny face before he was taken upstairs in an incubator.
The stitching up took half an hour, but I don’t remember that. I drifted in and out of consciousness that whole night. Every time I opened my eyes I could see my lovely husband sitting in the corner of the room. He looked so helpless, and he had to watch while his wife’s life hung in the balance, while my arterial line failed and had to be replaced, while blood dripped from my arm onto the floor, while drugs were administered and a hoard of doctors and nurses passed in and out, keeping me alive.
Upstairs my little boy fought. He managed to keep breathing with only CPAP (puffs of oxygen into the nose) and never needed intubation.
I was given a photo of him to look at, taken by the nurses. It spent the night on my chest, and whenever I was awake enough I would look at it. At last, the following night, I was deemed well enough to be wheeled upstairs for my first proper look at my son.
It was nothing like I’d ever imagined. All the books and magazines, and even the conversations with medical staff prepare you for a magical experience, a birth in water, or on a bed, with a healthy, chubby baby placed straight on your chest.
My son was in a plastic box. I couldn’t touch him. I could barely see him – just his back, and two scrawny legs. He was drowned by the tiniest nappy size available; a big tube was fastened over his face, and wires protruded from his pathetic little arms. I learned later that one was an arterial line, and it broke my heart to think of such a tiny little body having to be infused so painfully with wires. At the time I was spared the thought of his pain. I cried anyway, overcome by guilt and sadness. This was not how it was meant to be for him or for me. I was meant to be able to cuddle him, protect him, shelter him for another ten weeks.
Instead he had to settle for plastic and wires and beeping machines.
Don’t get me wrong. I’m profoundly thankful for all the medical care he and I received. Without a doubt we would be dead in any other circumstance. My son did amazingly well – within a couple of days he was in a cot, and I could hold him for brief spells; two weeks and he was out of intensive care and into the ‘going home room’. Three weeks later we took him home. He was five weeks behind his due date. To put it in perspective, his due date was the beginning of October, but he was born at the end of July.
Pre-eclampsia is a very dangerous condition, and one of the leading causes of maternal and infant death around the world. I was looked after very well, and thankfully I and my son came out of it with no long-term health complications. But the emotional side to pre-eclampsia is poorly handled in the medical community.
I was not really offered any long-term help with the emotional trauma I had suffered. Looking back I believe I had some form of Post Traumatic Stress Disorder – I had flashbacks, an overwhelming sense of anxiety, and depression. I also had uncontrollable outbursts of anger.
Having a first baby can be very hard as it is – the sleepless nights and exhausting days take their toll on any parent. But being so physically ill meant it was many weeks before I felt able to properly care for my son.
I was also unable to breastfeed him, though I persisted in trying for three months. It could easily take an hour and a half for me to breastfeed my son, then bottle feed him, then express precious millilitres of milk into a bottle ready for the next feed. Having very little physical contact in the early weeks, as well as the physical and emotional stress of pre-eclampsia meant that my body just could not produce enough milk.
Things that stay with me are being unable to hold and touch my son in the first few days of his life. Having to stay in a post-natal ward with other mums and their babies, listening to the babies cry and wondering if my son was crying upstairs on his own. Leaving the hospital without my baby, and seeing other parents carrying their new-borns home in car-seats; being too unwell to see my boy more than once a day. Giving up on breastfeeding even though I knew it would have been far better for his tiny gut to have personalised milk instead of formula. Trying to be a ‘normal’ mum and go out with friends for a coffee – as soon as I started to feed my son I realised this would never be normal; I pulled out his bottles of medication and syringed them into his mouth; I added thickener to his milk, and had to hold him upright so he wouldn’t choke on his bottle, instead of cradling him next to me. Sobbing into the sink as I sterilised seven bottles even though I was so exhausted I could have curled up to sleep on the tiles.
These things are still painful to me six years on. I felt so alone and aching. The most common thing people said to us was, “But he’s alright now, isn’t he?” I know they meant well but it felt as though they were negating the pain we had gone through. What I really wanted was for someone to say, “I’m sorry you went through that; it must have been horrible.” But I don’t think anyone really understood.
Illness has a way of isolating the sufferer.
It helps to write these things down. It helps to acknowledge that this was a traumatic and terrible experience. It helps to realise that it still affects me, and probably will until my dying day. I will always be a mother who watched her son struggle for life, who had to let go and trust that he would be ok despite my body having failed him.
I am thankful, thankful every day that we both lived. Thankful that I was treated well and that the disease was caught. If I had missed that 28 week check I think I could well have collapsed in the next few days. I am thankful that my body recovered and that I was not left with long-term kidney or heart damage, as some women are.
I am thankful that we brought my son home, albeit in very different circumstances to the ones I’d imagined. I am thankful that he suffered no complications, but grew strong and healthy. I am thankful that formula was available to replace the milk I could not supply.
I am thankful for the hundreds of people who prayed for us around the world – both our parents have formidable networks of Christian friends around the globe and the word quickly spread about the danger we were in.
I am thankful that when I left the hospital each night, I could ask Jesus to watch over my son and stay with him when I could not. I believe I was heard.
dancingintheshadowlands 