A rare condition turned my baby girl into ‘Wolverine’

Back in August 2010, our first-born, Olivia, woke from her nap, as normal. 

Except, this time, her breathing was shallow. Her lips were blue, her eyes were glazed over, and she’d gone as floppy as a Just Stop Oil protester getting arrested.

She was 10 weeks old. My wife Jemma picked her up and she recovered. Then, two days later, she did it again. 

Not wanting to be those neurotic new parents, we made a doctor’s appointment for the next day and I calmly went to work.

Then, that same afternoon, it happened again. Olivia’s eyes rolled back into her head and she looked lifeless.

Jemma called an ambulance. The paramedic took Olivia’s blood sugar. He said: ‘She’s 1.1,’ and we didn’t know what this meant until he told us it should be five.

Then we both knew it meant one thing: our baby was seriously ill.

I blame fellow comedian Rob Beckett for the Edinburgh Fringe show that has come off the back of my child’s trauma. I first told him Olivia’s story in a car share after a gig. He was utterly captivated, quite literally – the child locks were on.

I appeared on his Parenting Hell podcast with Josh Widdecombe to tell the story again, and the response from the listeners was so overwhelming I felt it had to be heard.

Olivia May Bennett was a perfect baby. Jemma had the perfect pregnancy and the perfect birth, too – this kid was fired out in 28 minutes, with no pain relief. 

I was so happy, mainly because we never had to pay for parking. 

But parenting is often like being tethered to a pendulum, which can swing from moments of exquisite joy, to moments of absolute despair, and you never see it coming.

Looking back now, the signs were always there. Olivia was sleeping all the time and she wasn’t taking her milk. I know that was hard for Jemma – she felt like she wasn’t getting that connection with her. 

It was awkward meeting up with other parents, seeing them sitting there with eye bags dangling like an old man’s scrotum while we had the energy of someone who’s just come back from a spa weekend.

Little did we know that we had a nightmare coming our way.

It can be normal for babies to have low blood sugar, but her results weren’t normal. Doctors just didn’t know what was wrong with her. 

Days turned into weeks and we both took turns to sleep on a fold out bed alongside her cot in hospital.

Olivia had every test going. She had her heel pricked hourly, had fluid removed from her spine, as well as her urine and bloods tested. She was force fed bottles of high calorie milk to keep her sugars up.

We were spewed out 14 days later, bewildered and battered, but told that it was transient and nothing to worry about. We both felt relieved and thankful that we could start our lives again. 

Except, it wasn’t just us and our new baby at home now, we had a blood sugar machine, a drawer of heel prickers and gallons of calorie feed stacked up in cupboards. 

We were told to keep going with the feeding and the testing as eventually her blood sugar levels would stabilise – that’d she’d grow out of it. 

We were happy to be home, but didn’t feel comfortable. We couldn’t sleep, couldn’t relax. We were frightened of our own baby.

We limped on for another two weeks and then, in the second week of September, it happened again. We took Olivia’s sugar and it was 1.6. Our nightmare was returning for a sequel. 

We walked through those automatic doors into A&E and didn’t emerge for another three and a half months.

We were admitted to oncology, which was a real gear shift. These children were very sick, and we were opposite parents going through hell and felt like imposters. We knew we shouldn’t have been there.  

Now, I don’t believe in God, but our first miracle happened a day later. Two nurses were discussing Olivia and a doctor overheard them. This doctor was an endocrine specialist, and she was convinced she knew what was wrong. 

Olivia had congenital hyperinsulinism, or CHI, a rare genetic condition, which is essentially the opposite of diabetes: the pancreas just produces insulin, this causes the blood sugar to drop and suppresses the glucose being produced.

The condition affects one in 40-50,000 babies (though it’s estimated to be higher) and can be lethal, in fact it’s often mistaken for cot death. Overnight your blood sugar drops, and with a condition like CHI, stays that way, so a child can slip into a coma.  

We now had a diagnosis, but we were still stuck in the same holding pattern, and the days turned into weeks. Nothing was happening. 

At this point we were quite institutionalised. Between blood sugar pricks, Jemma and I killed time by walking miles around the hospital, sinking our mortgage payments into the on-site Costa coffee, embracing our stress-induced weight loss, smuggling in wine and trying to sleep in one of the noisiest environments on Earth.

It was a shift pattern of synchronised sadness. Jemma did days and I did nights, stopping in a hospital corridor to exchange a quick peck and microwave meal. 

Between us, we never left Olivia’s bedside, holding her little hand through the bars of the cot as her mobile played Greensleeves until the batteries died.

Our family supported us by bringing in sandwiches, clothes and conversation. Our working-class fathers, although maintaining that stoic cold exterior, offered advice, wisdom and gestures of love that we will never be able to repay them for.

But I felt angry. Things had slowed to a halt and we needed answers. So, I asked to see the senior consultant. 

Putting my emotions aside, I grabbed my notepad of questions, stuck on my best suit, and fought for my daughter. This conversation changed things. We were moved back onto the children’s ward and put in touch with a specialist team at Manchester Children’s Hospital who were experts in Olivia’s condition.

Olivia was now given drugs to try and suppress the insulin. As with most medications, there were side effects. The doctor said she’d be dehydrated, nauseous and going to get ‘really hairy’.

He actually said that – a medical professional. I remember thinking: ‘You’ve got a degree mate, say ‘follically advantaged’ or something?’ 

Also, surely ‘hairy’ is the headline in that list! I’m not concerned if she’s feeling a little sick, I want to know if I’m going to be the father to bloody Wolverine.

We also discovered that CHI comes in two forms: one is operable and one isn’t.

Two lives awaited us and the odds were a straight up 50/50. The only way to determine which one Olivia had was with a scan. 

But at that time, there were only two machines in the world that could do a scan of an infant’s pancreas; one was in Berlin, and the other was in Philadelphia, USA.

This information seemed crazy at the time, but that was just the first of many bizarre revelations that we would encounter over the next few months.

Flying to Berlin on a private jet felt utterly surreal, but it’s cheaper than building a machine in the UK, apparently. This was funded as a result of the NHS ring fencing some investment into rare genetic conditions, and frankly, was something no-one had on the Bennett bingo card that year.

I can still remember flying over Manchester and thinking, down there right now, an old lady is being told she can’t have a new hip, patients are being left in corridors and junior doctors are striking over pay and, let me tell you, it’s guilt like that which really takes the edge of your second glass of champagne.

I won’t give too much away – you’ll have to see my show for that – but the scan was a success. After much-needed surgery on her pancreas, Olivia’s condition was completely reversed.

Within hours of surgery, she came off the medication, her pancreas came alive and all the excess hair soon fell out.

That was a shock: her cot looked like a barbershop floor, and our Dyson didn’t know what had hit it. I can still hear it now, under the stairs just trying to catch its breath.

We were discharged in January 2011, five months later – and it was the coldest winter on record. I remember walking out of the hospital and thinking we’d been in there so long, there’d been another ice age.

We were anxious parents for those first few months after we’d got parole from the NHS. Every time Olivia did a wet fart we were into A&E, me with my suit on and Jemma running behind me with a ready meal and overnight bag.

Eventually the panic subsided. Olivia was babbling, alert and a ball of energy and eventually we even forgot to take her blood sugar.

We purged everything baby related – we felt cursed, and weren’t going to gamble again with another child. We even came to terms with the idea that we would just be a family of three. But then, seven years later, our second child Sophia was born, and she’s totally unscathed.

Olivia defied the odds. She’s a young lady now, and to look at her you wouldn’t know she’d been through any of this. All that remains is a scar on her tummy and that faint German accent.

She said she’s happy for the world to hear her story, as long as she gets a cut of the book deal and rights to any television or film commissions. She might only have 70% of her pancreas left but she’s making sure she gets 100% of any profits.

Jemma kept a journal while she was in hospital, like a soldier reporting from the front line. That was her catharsis and performing at Fringe this year is mine.

See, nothing can prepare you for when parenting goes off-piste.

Sometimes your idyllic world is punctured in the most brutal of ways. Sometimes it can’t be solved with Calpol and back-to-back CBeebies.

Yet, despite all that, sometimes things just work out, no matter how dark and hopeless they may feel at the time.

Do you have a story you’d like to share? Get in touch by emailing [email protected]. 

Share your views in the comments below.

MORE : Nothing prepared me for the feelings of shame when my daughter started breastfeeding

MORE : Edinburgh Fringe show with graphic period detail is actually causing men to faint

MORE : How I survived a holiday abroad solo parenting a toddler

This site is protected by reCAPTCHA and the Google Privacy Policy and Terms of Service apply.