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Tales of the unexpected - Jack's story so far

Last Reviewed 17/06/2016

By Tina Nesbitt - SWAN UK Member

It had been eight years since I had to inject insulin into my thigh; oh the joys of gestational diabetes. This was something that I had never heard of before until it happened to me of course. At a time when I should have been happily eating for two at every opportunity I was instead carb-counting and monitoring my blood sugar levels.

Other pregnant mums at work got so jealous that I was having yet another scan and another opportunity to see my baby wriggle and kick away the sonographer's probe. Yet my blood pressure rose along with my anxiety levels until my obstetrician told me that my baby was growing normally. You see mums that develop gestational diabetes tend to bake rather large buns so we are scanned and monitored every two weeks to make sure that all is well. And all was well until my 34 week scan which showed that my baby hadn't grown. I was ordered to finish work and start my maternity leave immediately but told not to worry as they'd do another scan the following week. This carried on week after week until boxing day when my little Jack Frost was born a week and a bit early in the midst of a flurry of snow.

He weighed 5lb 3oz, just enough to cuddle, but was whisked away from me almost immediately because he wasn't breathing well and had a blueberry muffin rash. I'd never heard of a blueberry muffin rash before, but with such a cute name it couldn't be anything sinister could it?

Well it meant that Jack was incubated and on the neonatal ward for the longest two weeks of my life but came home happy if a bit on the small side.

He was a dream baby. He slept through. He drank his milk and seemed to adore being cuddled. We were all so happy and my nine-year-old tom boy of a daughter absolutely doted on him to my absolute relief.

Then the crying started

And I don't mean the I'm hungry or I'm wet or I'm tired sweet baby cry that gets the milk flowing and an unrivalled urge to pick up said child. This was something else. This was something you would hear in a horror movie. This was an 'I'm in agony' and need help now kind of blood curdling scream of agony. His tiny body would arch and contort in ways that I had never seen or heard of before. As time went on, so did the length of time that he could scream for. I think we clocked him at nearly 16 hours once. I'd never heard of that happening before and like what you are thinking whilst reading this, it can't be physically possible? Well it bloody is! Jack would scream for around 25 minutes and then some ethereal being would press the stand-by button and he would just switch off. He would go fast asleep as if nothing had happened, but only for approximately seven minutes. This was just long enough for you to be lulled into thinking he's done because no amount of rocking or shushing or swaddling or any other tricks would settle him. I know this because we had an entire children's ward staff, including receptionist and cleaning lady have a go but to no avail.

Test after test came back normal when we were admitted for a three week stay on the children's ward.

When Jack forgot how, and then refused to suckle his bottle, was when we were introduced to NG feeding. I was absolutely convinced that tube feeding Jack the amino acid predigested Neocate, that was prescribed for milk protein allergy, would bulk him up and make him happy enough to develop a smile. After all he was 11 weeks old now but who wants to smile when you're too busy screaming? But this tube would undoubtedly be my saviour even if it did mean going back to bolus feeding every 4 hours morning, noon and through the night. All I wanted was for my baby to be happy.

Then came the vomiting

And we're back at the horror movies again as I'm now reminded of Reagan's pea soup scene from the exorcist when Jack decides to empty himself across the room after each and every feed. It was at a weigh-in clinic that I broke down looking at all of the other happy chunky babies and comparing them to my Jack who was struggling so much to put on weight. Back on the children's ward and we were given a continuous food pump. This does exactly what it says on the tin. It feeds Jack small amounts of milk throughout the day but not enough to fill him and trigger his vomiting reflex.

The first night we used the pump Jack was in my arms and went to sleep. I cried. I know it doesn't sound like much but when your baby has screamed themselves to sleep for weeks it fills you with joy to know that they are content enough to just drop off. That didn't last long though. Medication helped a little but his reflux is still there.

Back to hospital we go

Before Jack left neonatal, they gave him a routine head scan. It showed that there may have been a little bleeding but nothing to be of any concern. However, as all other avenues had been explored, the paediatricians decided to repeat the scan. This raised more questions as there appeared to be some calcification and maybe an abscess but an MRI would be needed to confirm.

My husband and I were worried and started to turn to Dr Google for answers and explanations. They should make a horror film about Dr Google because he will tell you the worst stories you could ever hear. But then after 19 weeks Jack gave us the best present ever. He smiled!

About a month after the MRI scan it was explained to us that Jack has smooth brain surface but there was to be a meeting with specialist consultants before a suspected diagnosis of Lissencephaly would be given. Dr Google told us that the prognosis was less than eight years.

We were devastated. What would we say to our friends and family. Oh God what would we say to his sister Sophie.

We were referred to a specialist consultant paediatric neurologist at Royal Manchester Children's Hospital who told us that there are a few lumps and bumps on Jack's brain so it's not Lissencephaly. Thank the Lord, so if its not that, what is it then? Well despite his title, the many years of education and on the job work experience, he didn't have the foggiest. How could he not know? He specialises in this stuff.

Until it happened to me I never knew that you can go years without a diagnosis.

So here we are in limbo. Trying to treat each and every one of Jack's symptoms with medication, therapies and surgeries. Our next line of enquiry in the pursuit of a diagnosis is the universe of genetics. Everything is crossed that we get some answers to our ever increasing list of questions.

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