Molly’s CHI Story

EARLY DAYS

At 36 weeks gestation, my bump was measuring big, so I had a growth scan at 38 weeks.

Immediately panic set in as blood flow to the baby’s brain was slow and the baby was measuring small. I was induced, but things went wrong quickly I lost lots of blood and meconium so was rushed off for an emergency c-section.

During the c-section, we were told my placenta had given up in the last couple of weeks. Despite this our baby daughter was perfectly healthy with an Apgar score of 10. However, after 20 mins with my daughter a midwife noticed her breathing was laboured.

She was rushed off to NICU ward and I went upstairs to the main busy ward full of babies crying. My partner sent me a text, saying she was OK, she has low blood sugar levels, but they are saying that’s common.

The next morning, I saw her. So beautiful and tiny with so many monitoring wires.
I wasn’t allowed to hold her. I was heartbroken.

UNCERTAIN TIMES

The next few days after being told blood sugar issues are common and quickly disappear, we started to realise something else was going on. Nobody could raise her blood sugars. Expressed breast milk in a feeding tube made it worse. On day 6 of life this was switched to a nutritional formula feed.

On day 12 of her life Molly’s blood work came back from Great Ormond Street with her Hyperinsulinism diagnosis.  We were told by a consultant that Molly may need to have her pancreas removed. It was terrifying and we were overwhelmed.

Molly started Diazoxide and Chlorothiazide. The nurses were mixing the medications into tiny amounts of breast milk which was incredibly stressful as she needed to finish every drop and not spit up for it to work. She was regularly vomiting all her milk back up for about a week. I was told I would never be allowed to breastfeed her as the amount of milk she had needed to be restricted due to the fluid allowance.

This was so incredibly hard to hear, I felt like everything was being taken away from me.

KNOWING MORE

I can still remember the anxiety before every heel prick, and the relief when it was over 3.5. As the days went by, Molly got stronger, the lows stopped, and they started increasing her milk and decreasing the drip.

After 4 weeks in NICU they did a safety fast of 6 hours, which she passed, and we were discharged. They gave us a blood testing kit and her medications; we arrived home terrified of how to keep our poorly daughter alive.

GOING HOME

It was so hard. We set alarms on our phones for the feeds and labelled the alarms with what meds were needed at that time. Molly was so hungry; she would finish her bottle and immediately start crying for more. It was traumatic.

She barely slept, because she was so hungry, and when she would eventually drop off, an alarm would go for the next blood test, medication, and feed, and we would have to wake her again.

What should have been a happy lovely time at home with our new baby was personal hell. I remember breaking down and just feeling like a nurse and nothing more to her.