Your Child’s Not Okay – Part 1: Finding Out

Bear with me here - this one's quite long and detailed, but actually only takes in the first 12 weeks of Obi's life, and sets the context a bit around what was going on...

Obi measured pretty small during pregnancy so I had fortnightly scans, but three separate consultants thought it was ‘just constitutional’, confirmed he definitely didn’t have microcephaly (spoiler alert: he definitely does…) and that he seemed to be doing fine.

After a hastily arranged but far-too-slow-for-my-liking induction, Obi was born and given a clean bill of health, until the doctor discharging us realised he had a bit of a small head. No sh*t. That was, after all, why I’d been induced, but they hadn’t managed to join those dots together.

Obi had a brain ultrasound the next day, which showed abnormal fluid ventricles and some cysts – apparently something relatively common in premature babies (he was full term, induced at 38+2 because he was so small), so nothing to worry about immediately – they’d just keep an eye on him*.

He went for a follow-up scan at about 4 weeks, which showed the same thing, but before we were able to successfully get a CT scan done (who knew newborns won’t go into a deep sleep on demand?!), Obi woke us up in the middle of the night making weird noises, foaming at the mouth, head thrown back and a crazy arched back. He was limp and non-responsive, his eyes rolled and no colour in his face –completely terrifying. He vomited – something he’d been doing an awful lot of since about 3 weeks old – and perked up a bit, but 111 told us to call an ambulance, so we embarked on our first middle-of-the-night A&E experience.

We stayed overnight and managed a CT scan in the morning (of which I was very proud – there was some excellent food / nap planning on my part!), which was supposed to help us understand what was causing the enlarged ventricles and cysts. The doctor – who ended up being Obi’s paediatrician – told us that there was nothing in the scans to explain the “funny turn” (actual medical parlance, apparently!), but they would refer Obi to the Evelina children’s hospital to check for connections between everything that was going on. So far, so slightly concerning, but not majorly worrying, we thought – even the genetic screening tests had come back clear, so we were very positive!

Fast forward a few weeks of Obi continuing to vomit, barely gaining any weight (we got to know the hospital quite well…), and crying for hours on end, ALL the time. More worryingly though, he also wasn’t smiling, had some crazy movements going on, and was just generally a really, really tough newborn. He even 'passed' his 8 week GP check, with the doctor saying he'd been booked in slightly early and seemed strong, so nothing to worry about. We did get a single smile at about 11 weeks, but it wasn’t accompanied by any other ‘normal’ noises or engagement.

Various medical types suggested that maybe Obi wasn’t smiling because the reflux was causing him so much discomfort, but they probably just didn’t want to be the ones to tell me the now-obvious truth. At about 12 weeks Obi was admitted to hospital because not only was he not gaining weight, he was actually losing it. He was eating fine (I quickly shifted to formula; Patrick had told me that my breast-feeding Connie was “the worst thing that ever happened to him”), but just ejecting the whole lot of his (by now) prescription high-calorie formula up, every time. I thought Connie had had bad reflux, but this was something else!

So, there I was, alone with Obi in hospital, when his paediatrician came in to discharge us.

He said: “it’s clear now that Obi does have significant developmental delays”. I felt like I’d been punched deep in the gut, and remember physically stumbling backwards.

The doctor obviously saw that this came as a shock (it shouldn’t have, clearly!), and left me alone to process it. There were lots, and lots, of tears, a probably unintelligible phone call to Patrick, and I think I probably ate cake and drank a lot of red wine and vodka for at least a solid week.

Obi and I took a huge list of referrals home with us, and actually had Speech and Language Therapy come and see us in the hospital just a few hours after the referral was made, starting the first of many relationships with Lewisham’s community care team from the Kaleidoscope Centre in Catford.

We had heard the bad news, but now it was time to try to process it – the next blog will start the process!

What we Learnt:

1. Inpatient referrals can be significantly faster than outpatient referrals!

2. In Lewisham at least, the NHS hospital teams work closely with the Community Paediatrics team at what they call the Kaleidoscope Centre, which includes physios, speech and language therapists, occupational therapists and more. They are an invaluable source of information!

3. Nobody really knows anything, and definitely doesn’t want to commit to anything. In the early days of a baby’s life, we probably shouldn’t expect them to, either.

   
   

*I don’t remember most of these details in order, by the way, but WhatsApp has proved to be an excellent journal of events!