One woman reveals the toll of having a miracle baby

One woman reveals the toll of having a miracle baby

Revealed: Olivia Gordon describes what it’s like to have your baby operated on in womb Standing in the hospital bathroom, I stared in the

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Revealed: Olivia Gordon describes what it’s like to have your baby operated on in womb

Revealed: Olivia Gordon describes what it’s like to have your baby operated on in womb

Revealed: Olivia Gordon describes what it’s like to have your baby operated on in womb

Standing in the hospital bathroom, I stared in the mirror and steeled myself. ‘Is this happening?’ I asked. ‘Am I going to let them cut into my unborn baby?’ The answer was yes.

Less than a week ago, my husband Phil and I had been innocently making a list of what we needed for the nursery. Less than an hour ago, in the waiting room in a glass-walled hospital in Central London, I’d still been hoping the distinguished professor we were about to see would tell us that things weren’t so bad.

In fact, he told us things were worse. Our baby was in trouble and the only potential treatment was surgery. The sooner, the better. I took a deep breath.

My son Joel is a miracle, far beyond the sentimental ‘little warrior’ cliches. One textbook published in 1945 describes the problem he had while in the womb as a condition ‘incompatible with life’. In fact if Joel had been conceived in the year I was born, 1978, he would have died a foetus, his lungs crushed by amniotic fluid.

Yet here I am writing this, the mother of a cuddly, whimsical little chatterbox now aged eight who asks for sausages for dinner every day and can’t quite decide which snake he prefers, the boomslang or the inland taipan.

I’ll always remember the ordinariness of the last journey before my own life changed — the feel of the plastic handrails as I calmly sat on the bus to the hospital, for what I thought would be an uneventful scan.

It was a Monday; January 4, 2011. The previous afternoon, I’d noticed an odd stitch-like sensation in my 29-weeks-pregnant belly. When it was still there the next morning I supposed I’d better run it past the midwives, so Phil and I went to our local hospital in North London.

The midwives couldn’t find anything wrong and while they kept me in overnight — as they wanted to be sure the placenta hadn’t separated from the uterus — they said I could go home after they’d scanned me the next morning.

‘Oh wow! He’s moving! Look at those legs!’ I said, before I noticed the sonographer was very quiet. Finally, she said: ‘Er . . . it looks like there’s a lot of amniotic fluid.’

‘What does that mean?’ I asked, thinking it didn’t sound so bad. She paused awkwardly. ‘I’m sorry, you’ll have to see the consultant,’ she said, her voice withdrawn.

'I’ll always remember the ordinariness of the last journey before my own life changed,' writes Ms Gordon of her incredible experience of pre-birth keyhole surgery on her baby

'I’ll always remember the ordinariness of the last journey before my own life changed,' writes Ms Gordon of her incredible experience of pre-birth keyhole surgery on her baby

‘I’ll always remember the ordinariness of the last journey before my own life changed,’ writes Ms Gordon of her incredible experience of pre-birth keyhole surgery on her baby 

We were taken back to the ward. When the doctor arrived he explained that our baby had a rare condition called hydrops fetalis, affecting around one in 3,000 pregnancies, many of which usually end spontaneously, sooner or later during pregnancy.

For whatever reason, the baby’s lymphatic, or drainage, system fails. As a result amniotic fluid was building up in his body; it was all around him, under his scalp, inside his chest, restricting his growth and even filling my womb — putting him at risk of premature birth.

From the cubicle next to me, I could hear a doctor talking to a mother about her gestational diabetes. She was crying. I found myself feeling, of all things, envy. I wished I was having a ‘typical’ pregnancy hospital conversation.

I was transferred to a specialist unit at University College Hospital, London, the next day. By this point, I had Googled hydrops: most babies, I’d read, die in the womb or don’t live long after a premature birth. Phil refused to look at my searches, but I’d been unable to look away.

After a scan in a state-of-the-art ultrasound machine, we were told the only treatment was an invasive emergency procedure to drain the excess fluid from the womb and the baby.

To do the latter would involve pushing a ‘shunt’, a coiled plastic tube, halfway into the baby’s chest wall, to drain fluid out into the amniotic sac. If the fluid built up again it would need to be repeated.

Mother and son: Ms Gordon and her precious son, pictured several months after she gave birth to him following a string of potentially-fatal complications

Mother and son: Ms Gordon and her precious son, pictured several months after she gave birth to him following a string of potentially-fatal complications

Mother and son: Ms Gordon and her precious son, pictured several months after she gave birth to him following a string of potentially-fatal complications

No ONE could tell us why this had happened. It was gently mentioned that we had the right to abort this pregnancy if the situation deteriorated. But my thoughts gathered on a different fate: if the baby didn’t respond to the procedure and died of hydrops, I would give birth to a stillborn.

Phil and I signed the consent form. The longer we left it, the less chance our baby had. The procedure had to go ahead right now.

The professor of foetal medicine who saw us had done it before, but not often — the unit only did this procedure five times a year, since hydrops is rare.

I excused myself to go to the ladies’, while they prepped the scanning room for surgery. Five minutes later, I was back on the examination couch. They swabbed cold antiseptic on to my abdomen and injected local anaesthetic. I stared at the edge of the room. Phil later described to me what he had seen. First, they inserted a needle through my abdomen into the side of my womb and drained out several litre bottles of amniotic fluid.Our baby was one step safer.

Then, the professor watched the screen intently as he stood holding a cannula (tube) mounted on a sharp, thick needle. At an instant when our baby moved to one side of the womb and grew still, he called ‘Now!’ and plunged the cannula quickly into my belly, into my womb, into our baby’s chest.

I felt the force of this plunge and cried out. It wasn’t so much pain as strangeness. It felt wrong; the antithesis of every effort I’d made to keep my baby safe in pregnancy.

Everyone breathed with relief as our baby moved again.

The ‘shunt’ was then pushed into the cannula, then the cannula and needle were pulled out again, leaving the shunt in situ. The whole procedure took half an hour.

Slow development: Joel was 17 months old when he crawled. Two-and-a-half when he took his first steps unaided. He was turning two before he could eat and drink and needed two more operations to seal the hole in his stomach where the feeding tube had been

Slow development: Joel was 17 months old when he crawled. Two-and-a-half when he took his first steps unaided. He was turning two before he could eat and drink and needed two more operations to seal the hole in his stomach where the feeding tube had been

Slow development: Joel was 17 months old when he crawled. Two-and-a-half when he took his first steps unaided. He was turning two before he could eat and drink and needed two more operations to seal the hole in his stomach where the feeding tube had been

Two-and-a-half weeks later, while waiting for a check-up, I started bleeding. I was admitted to the maternity ward straight away — then my waters broke: the shunt operation had saved my son’s life for a few weeks in the womb. But the worst was still to come.

Joel was born at 32 weeks’ gestation. It was all too fast for an epidural. They set up gas and air, but I barely had the time to take a breath of it before I had to push — and then someone said they could see the baby’s head.

Four hours after my waters broke, Phil and I had a baby. But we couldn’t hear him cry. There was silence as the doctors worked on him out of my view. Soon someone spoke and told us our son was breathing.

According to his notes, Joel was born blue, making ‘minimal respiratory effort’ and with a heart rate of 40 to 60 beats per minute (the normal rate is three times that). He was resuscitated with oxygen, fed through a tube and a mask sealed over his nose and mouth.

But I knew none of this. For a split- second they laid Joel on my belly. I saw a flash of brown hair and intense blue eyes. Then he and the doctors were gone.

The morning after I gave birth, Phil and I walked, hearts thudding, down a corridor towards intensive care, Nursery 3, Cot 11.

There was Joel — in his plastic box, his hair and his face mostly concealed beneath a woolly hat and ventilator tubing.

I wanted to examine every hair on his body but I agonised over whether I should lay my fingers on his incubator, let alone open the portholes to touch him.

At the end of his first week Joel was finally stable enough to come out of the incubator for us to hold him — but only for 40 minutes.

The nurses told us he would be comforted by the sounds of our voices. I unearthed songs from my memory, starting with a croaky, half-whispered ‘Twinkle Twinkle Little Star’, tears rolling down my face as I saw Joel turn his blue eyes towards me.

More risk: One day, Joel breathed in his own vomit, a dangerous situation that could cause pneumonia and become life-threatening - but, thankfully, doctors were able to intervene

More risk: One day, Joel breathed in his own vomit, a dangerous situation that could cause pneumonia and become life-threatening - but, thankfully, doctors were able to intervene

More risk: One day, Joel breathed in his own vomit, a dangerous situation that could cause pneumonia and become life-threatening – but, thankfully, doctors were able to intervene

We were overjoyed when, after a week on the ventilator, the doctors thought Joel could start on a less invasive breathing machine with a mask.

He was also transferred out of intensive care and on to the high- dependency unit, a major step forward. But here, Joel’s progress seemed to get stuck.

First, he struggled when doctors started trying to see if he could cope without his breathing mask — for an hour a day at first.

It wasn’t until he was three months old that Joel could breathe reliably and the mask came off for good. Joel’s heart rhythms were also erratic and he struggled to feed. By his second month, when most premature babies his age were progressing to large amounts of milk through their tubes and starting breastfeeding, Joel was still in a stop-start pattern of tolerating milk through his tube in small amounts for a few days, followed by severe reflux.

One day, Joel breathed in his own vomit, a dangerous situation that could cause pneumonia and become life-threatening. Doctors began talking about surgery to fix the reflux and insert a feeding tube directly into his stomach.

This was when things started to get harder for me. It became increasingly clear that Joel was not doing what was expected of a normal premature baby, or even one with hydrops, now resolved.

We would soon learn there was a reason for this, but for now we had to try to accept the nurses’ reassurances that ‘every baby is an individual’. Every day, we travelled to the hospital carrying bottles of my expressed milk, then left at night. With every step, I’d feel a growing magnetic pull towards my baby; then, when I entered his ward, I was shut down by sadness at finding him in this lonely place, being cared for by strangers, and having to leave him there.

I couldn’t help comparing myself with the other mothers: if someone else stayed later at night than me or was already there in the morning when I came in, I felt pangs of shame. I always remember the happy mother whose baby spent a few days in the high-dependency unit and who broke my heart one day.

‘Aw, poor Joel,’ she said. ‘Did you know he cries sometimes late at night? And you know, sometimes the nurses don’t go to him right away. I feel so sorry for him.’

It was an ordinary spring day in the high-dependency unit when Joel was two months old. Phil had gone to register his birth and I had taken Joel out of his incubator when a registrar came into the room, wrote something in Joel’s hospital notes and left. The doctor had written ‘dx PTPN11 confirmed, Regional Genetics Service’. For a few seconds I was mystified, but then it hit me: this was a diagnosis.

All the tests done at the time of the shunt procedure and then at birth had come back ‘normal’. Phil and I had assumed Joel fell into the category of babies who develop hydrops for no known reason.

Happy ending for the family: 'I became a different person in that moment we left hospital behind. A happy person, instead of a sad person,' says Ms Gordon

Happy ending for the family: 'I became a different person in that moment we left hospital behind. A happy person, instead of a sad person,' says Ms Gordon

Happy ending for the family: ‘I became a different person in that moment we left hospital behind. A happy person, instead of a sad person,’ says Ms Gordon

But as soon as I saw PTPN11, I recognised the name. It’s a code for a genetic mutation found in people with Noonan syndrome, which I’d read about around the time of our 12-week scan.

Moments later, another doctor came in and sat facing Joel and me.

‘Joel has Noonan syndrome,’ she told me in a low, compassionate voice. She then handed me a print-out about Noonan’s and gently took me through it, line by line: Facial dysmorphia, including drooping eyelids, wide-spaced eyes, low-set ears, a prominent forehead. A webbed neck. I’d never seen anyone with a webbed neck.

There was more. Eyesight and hearing problems. Congenital heart disease. Abnormal growth, short stature and feeding problems. Kidney abnormalities. Bleeding disorders. Lymphatic disorders (which explained the hydrops). Undescended testicles. Developmental delay, and a good chance of a learning disability.

‘I know this sounds overwhelming, but Joel is unlikely to have all these symptoms,’ she told me, kindly.

I called Phil and left a message. I called my parents. ‘He will be even more special, and we’ll love him even more,’ my scientist father said, his normally matter-of-fact voice wavering. I spent the next couple of days happily cuddling Joel as usual. But then, in the vacuum while we waited to see the Great Ormond Street Hospital geneticist, I made one of the biggest mistakes of my life. I started Googling.

Children with Noonan syndrome were described in scientific papers and by families online using words like ‘stubborn’, ‘behavioural problems’ and ‘irritability’. Against the pure innocence of my baby, harsh words and extreme cases from strangers on the internet became imprinted.

One day soon after, standing looking at Joel in his incubator, for a moment I wasn’t sure I wanted to be a mother any more. I felt afraid of this syndrome, of my baby, of myself, of the strength of my fears.

Had we got a diagnosis for a child, even a baby, whom we had got to know, I am sure my response would have been different. But at the time I’d barely had the chance to hold him; I’d never been alone or outside with him. The diagnosis, combined with the physical separation between us, made him seem, suddenly, a stranger.

On the very worst morning, I looked out of the bedroom window and thought about whether I really could jump. I felt like a failure. Like the worst mother in the world.

The realisation that this bizarre hospital nightmare was not a temporary episode, but the start of a lifelong journey was almost too much to bear.

But as I held Joel’s frail, warm little body day after day, everything else went away. I breathed in my baby’s goodness. Joel was my baby, not a strange mutation. The same sweet boy I’d always loved so much it hurt.

Five months after his birth — and major stomach surgery — Phil and I were allowed to take Joel home. But, as one of the neonatal consultants once said to me, ‘you haven’t fixed it just because they’ve gone home’.

No one knows what life will be like for children like Joel, born prematurely and seriously ill. A group of children whose lives began with an unprecedented level of medical intervention and, in many cases, like Joel’s, diagnoses which were impossible to pinpoint until recent years.

Joel was 17 months old when he crawled. Two-and-a-half when he took his first steps unaided. He was turning two before he could eat and drink and needed two more operations to seal the hole in his stomach where the feeding tube had been.

At four, Joel had open heart surgery.

Even so, I became a different person in that moment we left hospital behind. A happy person, instead of a sad person.

Practically the first thing Phil and I did when we got Joel home was put him in a sling — a sling! like any other baby — and walk to Cherry Tree Wood.

This was the park we’d talked endlessly to Joel about from his first few days — telling him all about the birds, swings, squirrels and sky that he would see when he came home.

In the photo Phil took of me holding Joel that day, my mouth is smiling a brand-new happiness, but my eyes look haunted. So much had led to that perfect moment, and although it had at last come, it’s clear from my eyes I would never forget the path. 

Adapted from The First Breath: How Modern Medicine Saves The Most Fragile Lives by Olivia Gordon, published by Bluebird on June 13 at £16.99. To order a copy for £13.59 (offer valid to June 18), call 0844 571 0640. p&p is free on offers over £15.

 

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