Harry’s story so far is told by his mum Rebecca.
Harry was my second baby. I had a totally normal pregnancy, which was actually easier than the first! Delivery, again, seemed totally normal. I had a lovely water birth and, once slow labour had peaked, he was delivered very quickly at 12:25am on the 1st February 2019, the first February baby to be born in the hospital! I just remember looking at his perfect little face and how much he actually cried when he was born! It took some time to settle him in comparison with my first, he also burst a blood vessel in his eye which they said was common with quick deliveries. Looking back it makes me question whether this contributed to Harry’s condition; but, at the time, nothing could detract me from my bubble in that I had just created this perfect, little, 7lb 2oz grumpy bundle of joy.
We had to stay in hospital for a week following delivery as they suspected Harry had an infection as he couldn’t keep his temperature up and he needed to be regularly monitored. After a week, they couldn’t find any sign of infection and all test results came back clear – and I was desperate to be home with my other baby – so they discharged us (at this point Harry was still having the same issues with his temperature at birth but, with everything coming back clear, they had no reason to keep us in.)
All seemed fine for the one week after we got home then, at 3 weeks old, the screaming and crying began. Harry cried solidly all day. Every day. I now know this was due to neuro-irritability but at the time, I didn’t know what could be wrong. We tried infacol and gripe water assuming it was “colic” as the GP suggested – no difference. We treated for reflux, no improvement. I was exhausted and filled with anxiety about having to leave the house with a screaming baby because I knew I would get the typical “does your mummy not feed you?” comment which made me feel even worse as he was very well fed!
I lost count of the amount of appointments I made at the doctors to be told “babies do cry.. is this your first?” patronising and unhelpful. We even had several out of hours and A&E appointments because I knew something wasn’t right with my baby and nobody was giving me any answers and all I could do was watch him struggle. Heartbreaking,
However, at around 4 months old, I had put Harry down in his bed for a nap and he was unusually quiet so I stood next to the bed watching him and that is the moment he had his first (that I had seen), typical rhythmic jack-knife spasm. I quickly grabbed my phone to record the movement as I felt worried about what I was seeing and we had a doctors appointment later that day. I showed the footage to the GP who said he looked constipated and to wait and see a paediatrician (we were in the process of being referred for his eyes due to poor eye contact and engagement.) I felt like I couldn’t wait as I googled (I know you shouldn’t) Harry’s behaviour and “Infantile spasms” flashed up with the UKIST charity warning STOP sign. It stated this was a medical emergency so the next day we rushed to A&E and, upon taking one look at the video footage and actual spasms, we were admitted to a ward at Kingsmill Hospital. Thankfully, someone was finally listening to me. Whilst at this hospital, Harry had an MRI scan which revealed our cause for the seizures. I just remember my world collapsing in front of me after being asked to have a chat in a side room “we believe he has had a stroke and has significant brain damage to the left hemisphere.” I didn’t even know babies could have strokes, I was filled with unanswered questions. My poor little boy had been suffering all this time and I had been ignored. I remember the nurses bringing him into that side room and, for the first time that day, he wasn’t crying and he smiled at us and gave us the biggest cuddle we all needed – just like he knew.
After the diagnosis, we were referred to a ward at QMC in Nottingham for an EEG and they were more of a specialist hospital for this field. The following morning, Harry had his EEG and the doctor came to speak to us later that day and confirmed his brain wave pattern was very chaotic and he displayed hypsarrhythmia – something I had never heard of at the time. The doctor said treatment should be started immediately for the best outcomes, so we were prescribed Vigabatrin and prednisolone steroids. Overnight, our baby transformed. My baby who screamed every minute of the day, smiled. He could play with toys and actually concentrate on things now the irritation had gone. Within 24 hours we saw a huge reduction of spasms and 48 hours later, they had stopped. The doctor confirmed the biggest affected part of Harry’s brain controlled mobility so he diagnosed him with cerebral palsy and sent a physio referral immediately. We were discharged 2 days later and given the prescription to administer at home – something I found daunting, always the worry of “but what if I forget?” The steroids were only for a short course and we were able to wean off successfully without any relapses. Harry, although he was a lot happier, was still irritable on the steroids and he gained SO much weight! Yet they were so worth it, they showed me my babies personality. I will always be so grateful for all of the doctors and nurses we saw who acted so quickly.
Harry began to become much more alert over the following months, he could engage, his eye contact was much better, he babbled, he learned to roll, he really just became much more responsive and was catching up on those miserable 4 months he had! Then, I noticed a very subtle spasm 3 months after the initial diagnosis. I was devastated but tried to remain positive, hoping it was a one off. Unfortunately, it wasn’t and we saw a relapse in the spasms; only this time, they presented very differently and they were much more subtle but happened every time he woke from his nap. I filmed the episodes and sent them to the epilepsy nurse and the doctor, they both agreed the footage didn’t look epileptic so the fight continued. It took 2 months before an EEG confirmed my fears, that I had been right all along. Harry was still taking vigabatrin at the time so they decided to add Epilim and see if that helped. Instantly, they eased but we had to up the dose to the maximum to keep them under control. Every time Harry cut a tooth, he developed an ear infection which would trigger more spasms and this is still an ongoing issue. We are awaiting EEG results currently as we still have breakthrough spasms and some absences, hopefully this will be the step to becoming seizure free!
At 17 months now Harry amazes me every day, he has a few words and makes a lot of sounds (tick tocks when he sees a clock, snorts if he sees a pig, hisses if I ask what the snake does). He is doing amazingly with his physio, he learned to sit unaided around 13 months and he is so close to mastering crawling now – something they thought he wouldn’t be able to do with the right sided weakness. He can push himself to sitting up by himself and even on to his knees recently! He defies the odds and his wonderful, determined nature is what strives him to do so. My baby will always be my inspiration, he has so much on his plate but he still wakes up with his gorgeous smile that lights up the room! He is making steady progress but my Harry is such a fighter, I feel he can conquer the world.
The journey is not an easy one, it is not one I would wish on anybody but it has shown me how strong we are as a family and how strong and resilient babies really are ! It has changed me as a person and I try to see the positives in everything because life is precious. For anybody experiencing the journey I would say, you are stronger and braver than you think, because you have to be. Harry is my shining light and every inch stone met becomes the greatest achievement.
Following from this statement, I would like to take the opportunity to thank the UKIST charity for all of the wonderful support we have had over the past year and the continued support we receive. You are all fantastic!