Isla’s CHI Story
From birth to diagnosis by CHI Mum Jess
Day 1
I had concerns when Isla was just 12hrs. She would sweat profusely. She was sick, not just a bit of projectile vomit, this girl could cover a whole cot in sick. At the newborn check I was told it’s due to being born too quick (45 minutes).
17 days passed none of these symptoms, were subsiding yet I was still getting told the same thing by midwifes, health visitors and GP’s. I made the decision to take Isla to A&E. There we met Chris one of the best doctors I’ve met. He listened to me and heard what I was saying without brushing it off.
Checks were done, everything seemed fine until a urine sample led to them taking her blood sugars. Then it was chaos, so many doctors in one room, so many checks being done. I sat there feeling helpless not having a clue what was going on. I was told: ‘Well done for bringing her in if you hadn’t, she wouldn’t be here for much longer’ Those are the words that stick…
Day 2
It had been a long night; we still had no idea what was happening. Isla had a NG tube in place, but we were still trying bottle feeding, she had a cannula in place with 10% dextrose to try and keep her blood sugars stable yet still Isla was dropping to 1.7!
Another day was passing, people were asking me questions ‘how is she?’ ‘what’s wrong?’ ‘When is she coming home?’ all of them I couldn’t answer.
Day 3
We thought things were looking up earlier on in the day, Isla managed to have her dextrose reduced and managed a whole feed without her NG.
They attempted reducing her dextrose. However, we saw another serious deterioration, so back on the dextrose it was.
Still no diagnosis, no cause for what was happening, no peace of mind. Hourly blood checks, 10 tubes of blood every few hours, and NG feeding was to be continued.
Day 3
We thought things were looking up earlier on in the day, Isla managed to have her dextrose reduced and managed a whole feed without her NG.
They attempted reducing her dextrose. However, we saw another serious deterioration, so back on the dextrose it was. Still no diagnosis, no cause for what was happening, no peace of mind. Hourly blood checks, 10 tubes of blood every few hours, and NG feeding was to be continued.
Day 4
This was the day that Isla ended up on intensive care… Isla’s cannulas had been tissuing the poor girl had umpteen cannulas and attempts, but her tiny little veins just couldn’t take it.
The decision was made to do a cannula through her scalp, they shaved her little hair, put needles into my baby’s head. We then discovered there’s only so much dextrose the scalp can take, 12%/15% at a maximum I was told, Isla was on a dose of 20% dextrose. All of that for nothing
Day 5
Isla had gone onto high dependency during the night. This was great news as she didn’t need such intensive care but was still needing one to one. Still no diagnosis however there were talks of what it could be, and she started on the medication, Diazoxide which she is still on now.
Isla had to have a heart scan due to the long-term effects it can have. She would also be started on Chlorothiazide as it can cause water retention. We were still seeing lows, still calculating feeds but we were hopefully going to start managing it…
Day 6
So, it was confirmed, IsIa has Hyperinsulinism. The condition she was born with.
She had been showing symptoms of since day 1 of being born although now she was nearly 4 weeks old. I had finally been listened to.
There were no more wires attached to Isla, no IVs, no NG tube all she had in place was her Hickman line. We were coming home within a few days with a diagnosis, 3 lots of medication, a testing kit and glucojuice if needed.
Isla’s now alongside her peers in school but is still having her blood sugars monitored regularly at home and by her teacher. We have recently had another increase in medication but thankfully her hypos are less often than before.
Isla now takes part in after school activites she does ballet and tap.
We do have to monitor extra closely when doing these things and other activites such as walking long distances and being in a pool as these things have always been a struggle for Isla but for now we hope to be on a more positive path with some great support around us