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Kicks Count: My Pregnancy Journey with Pre-eclampsia and Hyperinsulinism

Laetitia Gordon-Furse and Bryce who had hyperinsulinism

After a blissfully normal final scan at 36 weeks, I had reduced foetal movements at about 37 and a half weeks. I’d been for coffee with my lovely NCT friends on a very sunny Easter Friday, and remembered expressing how frustrated I was at my previous midwife appointment, where I’d been asked if I was ‘happy with the baby movements’.

Like the other girls, I wasn’t really sure what ‘normal’ was as a first time mum, and we all tried to reassure each other. ‘Well, I guess they must change because the babies are so big now? I’m not sure…’. I also mentioned I’d felt super swollen – my rings wouldn’t fit. I felt shattered, but who doesn’t when they’re nine months pregnant?

I waddled home, and having successfully perused the internet to find nothing helpful, I drank some cold water, ate a whole bag of mini eggs, and promptly felt my baby son hiccup. ‘Excellent I thought, just me being silly’. And stupidly, I went to bed. What I now know, thanks to the charity Kicks Count, is that hiccuping is an involuntary reflex and does not count as a baby moving.

‘I stopped feeling my baby move’

At five am, when my little boy would usually be doing a disco dance in my womb, I felt nothing. I prodded my stomach to get his little kick back, and had nothing but a bounce back, like a beach ball.

I thought of the big posters all over the maternity unit, by Kicks Count, expressing clearly and in large purple letters that ‘feeling your baby move is a sign that they are well’. I felt sick and felt it was the right time to go.

I woke my husband up and we agonised over whether to go in. We didn’t take a hospital bag, or the car seat, we just pootled off to King’s College hospital in south London, me with my hand on my stomach, pressing desperately, poking, prodding, hoping to feel him wake up. Nothing. I got a very slight wave, a slight roll, every 30 mins or so, but no more.

‘I was hooked up to the monitors and we had an anxious wait’

I was confused and anxious. I arrived and was hooked up to the big belly bands that monitor baby heartbeats and uterus contractions. I was amused to see my uterus flexing its rehearsal muscles, and relieved to hear the familiar galloping horse sound I’d heard just a couple of days before with my midwife.

I watched the big printout sheets carefully with the heartbeat line on top, my uterus contractions below. They look like sound waves, like a stereotypical heart monitor screen you see in medical dramas, one on top of the other. Only, when my uterus was contracting, I watched his heart rate line go flat. I’d catch my breath, wait a few seconds, my tummy would relax, and his heart would pop back up again.

I was given a clicker, ‘click this whenever you feel the baby move’, the midwife said. I clicked once. The midwife came back to check on me, lips pursed and not saying much, and gradually, I was moved from room to room, until eventually, someone in scrubs turned up.

My baby had been stubbornly breach for weeks, so I was always having a planned section, but they said ‘We’re going to keep you here and deliver the baby tomorrow’.

I remember feeling excited, and thinking ‘ok, good’. Time for him to come then. Thank god. My parents were out of the country at my sister’s wedding, and in-laws five hours away up in Scotland. My brother and his wife were at home with their four-week-old. My husband drove home to get the car seat, get the hospital bag, and I was filled with nerves, excitement, and relief that the baby was coming. I promptly texted my close friends, called my parents, and twiddled my thumbs.

A shock emergency cesarean

But after what felt like seconds only, my husband came back, and at the same time, the consultant obstetric surgeon came over and peered at the printouts. He barked at the midwife ‘has it been like this the whole time?’ And, without waiting for an answer, said ‘right we’re gonna do it now’.

Just 30mins later, we were parents. The c-section, though an emergency, was surreal and yet calm.

My little boy, Bryce, was born to “girls just wanna have fun” by Cyndi Lauper playing languidly on Magic FM and my tiny and perfect human was raised over the drapes like Simba. About 30 minutes later, all wasn’t well.

My husband noticed a slight shake in our little boy’s leg. “What’s that?” A breezy midwife said ‘Oh, it’s normal. Their neurological systems aren’t fully mature yet. Don’t be anxious.’

A few more minutes passed, and the shaking continued. My little boys blood sugar was taken, and it was unreadably low. He was whisked away, upstairs to the NICU. 

When the NICU became our home

What followed was the most traumatic six months of my life. My son’s oxygen levels were very low, and it transpired that I had preeclampsia – and one of the risks of that is that the baby gets reduced oxygen and nutrition.

Preeclampsia disproportionately affects people who are BAME, diabetic, overweight or have naturally high blood pressure. I had none of those risk factors, and so assumed it wouldn’t affect me. When I was told at my 36-week scan that my blood had shown some markers of preeclampsia, I had dismissed it. I’d displayed zero symptoms at the time. I was aware that the only ‘cure’ for preeclampsia is to give birth, so I had shrugged and thought ‘well, not long to go! I feel fine right now!’

I later found out that if I hadn’t gone in when I did, my baby would have died, and I would have had a stillbirth, at full term. Suddenly, the swelling in my face and fingers, the reduced movement, the markers in my blood, all made sense.

When I first heard of hyperinsulinism

 

Baby Bryce who had hyperinsulinism Baby Bryce in hospital. Image: Laetitia Gordon-Furse

My son stayed in the NICU for nearly five weeks and had a rare condition called hyperinsulinism, where this blood sugar wildly swung up and down. He needed bag after bag of sugar syrup through a drip, just to keep his blood sugar stable and prevent brain damage. He was only allowed a few ml of breastmilk, but I threw myself into pumping, and spent 40 minutes, 8 times a day including overnight, trying to get just barely 20 millilitres out, with none of the oxytocin, none of the cuddles, and all of the pain.

The doctors said it would be a case of lowering the sugar, increasing the breastmilk, and watching to see what his blood sugar did, with a cocktail of accompanying drugs.

All of the stress and adrenaline I was feeling was inhibiting my letdown reflex and supply, but I was determined. I didn’t know what else I could do. I was able to breastfeed successfully I think once. I had ten, beautiful minutes. And after that, the journey was over.

I felt redundant as a mother

When Bryce was in his incubator, I couldn’t hold him, couldn’t change his nappy, couldn’t have skin to skin without four people helping me to get him out of the incubator, and dealt with him screaming in pain without being able to comfort him or feed him. I felt completely redundant as a mother.

With all the breast pumping, I contracted nuclear mastitis and a 42-degree temperature, and at week four of my son being in hospital, was rehospitalised myself just downstairs. ‘oh well’ I thought, at least I don’t have to drive in to see my son because I’m right here.

I was given three bags of IV antibiotics to knock the temperature down and was told that I’d need to up the pumping to 12 times per day if I was going to get my supply back up. I was told that due to my son’s drugs, I would never be able to properly put my son on the boob, as it was imperative we measured his fluid intake to the millilitre. I was physically, and mentally broken.

Midwives are angels. I will never forget the midwife who admitted me, saying, ‘you know, you don’t have to do this. You’ve managed unbelievably well. You’ve produced enough milk for six weeks of feeding. You can stop this. Formula isn’t poison you know.’ I shook it off. I wasn’t stopping.

Homeward bound

When we finally, finally got home after four weeks and four days, my husband dutifully put together a spreadsheet. Drugs five times a day. Blood sugar readings eight times a day. 57 millilitres every four hours only and no more. Pumping 12 times for 40 mins.

I looked at the spreadsheet and realised that according to our calculations, I wouldn’t be sleeping. It was time for my breastfeeding journey to come to an end. I sobbed.

And then sobbed with relief. We then existed, for the next six months. I went into a complete spiral. I felt like a horrendous mother, who couldn’t take care of her baby – constantly angry, or crying. My husband did all of the nights, for weeks, because I was struggling just to get up in the morning.

The bottle-feeding meant everyone felt they could ‘have a go’, where normally a mother would enjoy that bonding by herself, or at least have the choice to. I felt more and more distant from my son, more and more angry, resentful, anxious, and frustrated at the situation.

Saved by the NHS and becoming a tiger mum

The NHS came to my rescue. After much pursuing, a perinatal nurse started coming to the house. Then a community nurse, to help me bond with Bryce. We did play therapy, baby massage, and then I realised that I needed to take back control of the feeding. I started sloping off in private to feed my baby, having skin to skin but with the bottle, and very, very slowly I started to feel better.

It was taking back control of the bottle feeding, by asserting myself as the number one provider for my child, that got me over my lowest points. Surrounded by the BREAST IS BEST posters for my son’s checkups, I gradually got used to the naive questions or pained looks when I explained that I was bottle feeding, and started channeling that anger into being tiger mum, instead. A few friends doggedly checked in on me, every day, and my medicalised motherhood finally came to an end when my son was declared cured of hyperinsulinism at six months old, following an eight hour, supervised fast in hospital.

My journey of pregnancy and birth might have been different, and although parenting is hard work, I treasure the special bond I have with my son and am ever thankful to the NHS who worked tirelessly to save our lives.

Bryce, now. Image: Laetitia Gordon-FurseBryce, now. Image: Laetitia Gordon-Furse

Pre-eclampsia affects up to six per cent of pregnancies in the UK and can be life-threatening for mother and baby. Make sure you know how to spot the warning signs – and if in doubt, get checked out. You can find out more about reduced feotal movements and what to look out on the Kicks Count website.

Laetitia is the founder of New Leaf Podcast which we were honoured to feature on. You can check out the episode here.

What is congenital hyperinsulinism?

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