‘I nearly lost my son... to a gas­tro bug.’

Friday - - Editor’s Letter -

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 in­ten­sive­care 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 lifethreat­en­ing 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 lit­tle­un­der­stood 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.

The doc­tors were blunt – another hour at home and the out­come would have been very dif­fer­ent

Iain and I were wor­ried sick about Arthur

He is now part

of a test­ing for the lit­tle- pro­gramme

known con­di­tion

When Arthur

was born there cud­dles to look were no for­ward to, it

was all tests

he was After be­ing found un­re­spon­sive

hy­po­gly­caemia di­ag­nosed with ke­totic

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