As every mum knows, day four after giving birth is often far from easy. For many, it’s the day their milk arrives and with it, all too often, 
a hormonal surge and a dose of the baby blues. For me, it was the day I was forced to leave my newborn son behind in hospital, his tiny body webbed in wires.

Arthur was born a little before his due date by C-section, as a result of a uterine abnormality I’d only become aware of during pregnancy. It was a scary time, so when he arrived safely and scored extremely well in his Apgar tests, my husband Iain, 33, and I were relieved.

A day later, or 29 hours to be precise, Arthur was being rushed to neonatal intensive care having turned purple while feeding. The doctors at Dubai’s City Hospital quickly discovered Arthur’s blood sugar was extremely low, just 0.9 (blood sugar is classed as low at 2.6 in a baby) and diagnosed neonatal hypoglycaemia, or in layman’s terms, temporary low blood sugar in the hours or days immediately after birth.

It was a surprise, given I hadn’t had gestational diabetes and he wasn’t born prematurely, the two most common risk factors. The doctors reassured us it was a common occurrence in young babies. As such, we were confident we’d have him home with us within days.

But three days later, I found myself being discharged from hospital to return to our home in The Greens, Dubai, still unable to hold my son.

His hypoglycaemia was so severe, the doctors had been unable to bring it under control using the usual dosage of glucose. In order to give Arthur the amount he required without damaging his delicate newborn veins, they’d been forced to insert an umbilical tube, which meant it was impossible to hold him without the risk of damaging the vulnerable insertion site or dislodging the apparatus altogether.

It was hard – I’d never imagined I’d feel upset about missing the ‘disgusting’ belly button arrival but it seemed the first of many milestones we were being denied – yet we remained hopeful. Sadly, a few days later when the doctors had gradually weaned Arthur off the medication, his blood sugar rebounded and we had to resume treatment. Still no cuddles to look forward to, but lots of tests.

It was a tough spell, full of worry and guilt that only continued to worsen despite the best efforts of four frantic grandparents and a coterie of amazing friends who came bearing lasagnes, balloons and cuddles.

I’ll never forget the day I was asked to leave the NICU (neonatal intensive-care unit) so I didn’t have to witness a procedure involving injecting Arthur with a hormone to test the function of his adrenal and pituitary glands. The consent form warning us of the dangers of this test was terrifying – anaphylactic shock? heart failure? – and went against my every protective motherly instinct, but thankfully the results came back normal.

He was eventually discharged at 16 days old with a diagnosis of severe, but temporary, hypoglycaemia.

The initial days of having Arthur home should have been joyous, but in truth they were terrifying. Having been unable to cuddle him for two weeks, I now found myself terrified I’d break him. He couldn’t breastfeed directly; he had to have complex carbohydrates added to his bottles as his natural retention levels were so low, so I was expressing. Sleep and food became a distant memory.

But gradually, life became normal. Arthur responded well and within months, we’d been allowed to stop testing his blood every few hours. He was eating and sleeping well and Iain and I started to feel like we were getting into the swing of parenthood.By June last year, Arthur was a happy, bouncing 10-month-old. Having been unable to return to work at first as the features editor of a women’s glossy magazine due to his health, I was looking forward to getting back into work and had registered him at a wonderful nursery.

Then one morning, Arthur suddenly started vomiting. After a few hours of keeping nothing down, I called our paediatrician, who advised clear fluids and monitoring for the next day or two as there was a nasty gastro bug doing the rounds.

That night, after a few hours without vomiting, we put Arthur down to sleep and went to bed ourselves. Despite my best efforts, I lay awake worrying until, at around 3am, I noticed a strange, low-level whine on his monitor. I thought he might want a bottle, and went in to check on him.

I found Arthur unresponsive in his cot. My attempts to rouse him revealed only the whites of his unfocused eyes, which were rolling back in his head. He was limp, lifeless, and unable to control his own limbs. It’s hard to describe the emotion of seeing your happy, lively baby pale and listless. Time slowed down, my heart rate increased, and with panic rising in my throat, we rushed to City Hospital A&E. The doctors found his blood sugar had plummeted to a life-threatening 0.6 – the lowest they’d ever recorded. I felt physically sick. While they refused to confirm that he would come around, I knew our baby was very, very ill.

It had been 10 months since Arthur had been discharged from NICU and his progress had been such that we’d long since stopped monitoring his blood sugar. Neonatal hypoglycaemia is temporary and this was the first indication we’d seen that he might have a more permanent condition.

Given the barrage of tests performed on him in his first weeks, ruling out all obvious diseases, it was a terrifying realisation. Half an hour later, doctors looked as astonished as we did when the glucose kicked in and Arthur sprung to life, hollering for milk. He drained two bottles then fell asleep. At first we were relieved, but then reality set in. While a normal child could suffer hypoglycaemia during an illness if they’d not been taking in enough calories, a level as low as Arthur’s was entirely unexpected. Such an extreme could lead to brain damage or death.

The doctors were blunt – another hour at home and the outcome would have been very different. The speed of Arthur’s descent – just one day of sickness – was most certainly indicative of an underlying condition, but what? We were at a loss.

It took a week to get Arthur’s sugars stable enough for us to go home, but the doctors were clear – we needed further tests by a specialist. There was one doctor in Dubai who would be willing to perform the tests, but when the option of being referred to the world-leading specialist unit at London’s Great Ormond Street Hospital (Gosh) was mooted, we barely had to think about it.

The journey to London was terrifying, and if travelling with a small child is hard, trying to take blood from one at 30,000 feet is immeasurably worse. Adding to our woes was the fact that the tests would take weeks, possibly months. It was longer than my husband could take off work so, reluctantly, after seeing us safely to London and being reassured that Arthur’s condition was safe for now, he returned to Dubai.

Thankfully, Arthur and I were in the right place. As a Brit, I’d always known about Gosh. I’d watched it on Children In Need fundraisers every year and felt deep sympathy for the parents there. It loomed terrifyingly in my mind as the place where dying children spent their final days. I couldn’t have been more wrong. Instead, Gosh is a facility where the halls ring with laughter, where staff never run out of smiles, and the expertise on hand is second to none.

But our stay wasn’t easy. An overnight fasting admission, when Arthur spent 16 hours becoming increasingly hungry and, understandably, angry, was especially hard. For the next week his blood sugar was monitored 24/7 to see how it was being used by his muscles and how quickly his body burned through carbohydrates.

The upshot? Arthur has a rare and little-understood condition called ketotic hypoglycaemia – a serious form of low blood sugar, which according to experts has nothing to do with diabetes. Sadly, very little is known about what causes it (not even doctors know) and, as such, my little family is now part of the rare disease testing programme at Gosh in a bid to help experts learn more.

For now, we have to be very aware of his food intake during illness. And a simple bug could be very dangerous. We spent a week in hospital over his first birthday when he wouldn’t eat due to a bout of tonsillitis. But on the whole he’s healthy and happy and the best news is that children largely outgrow the condition before they reach high school – in some cases by the time they are around nine.

We carry a blood sugar monitor with us, but we only have to use it if we have reason to suspect Arthur could be harbouring a bug, and the outstanding medical team we have on hand have given us the confidence to manage his condition, as well as the knowledge to determine when A&E is the only option.

We’ve got a few years of summers ahead commuting to Gosh for annual check-ups, but life is pretty normal. Our son is 16 months old, and there’s never a dull moment – he’s walking, talking, causing absolute chaos! Given that less than a year ago we were questioning whether he’d survive at all, chaos has never looked better.

What is ketotic hypoglycaemia?

Ketotic hypoglycaemia is a rare but serious form of low blood sugar (hypoglycaemia) that occurs in young children after a period of fasting, usually after illness. It is often called “accelerated starvation” and usually occurs in children between 18 months and five years, and generally goes away spontaneously before eight or nine years.

With ketotic hypoglycaemia, the body doesn’t have enough stored carbohydrates to correct the low blood sugar. Most children can tolerate going without food for a brief period with no serious side effects. But in this case skipping a meal may result in very low blood sugar levels.

The body converts fats into usable carbohydrates (gluconeogenesis) to meet energy needs. A by-product of this process is ketones. When ketones build up in the blood, they can lead to serious problems, such as coma.

Treatment of ketotic hypoglycaemia may include intravenous (IV) saltwater (saline) and sugar (dextrose) solutions.

Signs and symptoms of ketotic hypoglycaemia:

  • Irritability
  • Sweating
  • Fatigue and lethargy
  • Rapid breathing
  • Low blood pressure, resulting in dizziness
  • Loss of consciousness
  • Coma