Our April warrior – Jack

Jack was born a healthy, happy baby by a planned C-section just under 40 weeks. Everything was fine, we got out of hospital the next day and started our new journey as a family of four. On day 2 we noticed Jack having little jerks lasting just moments, by the early hours of day 3 these ‘jerks’ were lasting maybe 10/15 seconds. We phoned NHS24, visited A&E and got dismissed as his nervous system developing and him being hungry. I phoned my midwife a day early on day 4 and thankfully she took us seriously – I’ve no idea how long it would have taken otherwise for us to start to get the help Jack needed and we’ll be forever grateful to her. She sent me to our local neonatal unit for a ‘quick check’ just in case and from there our world started to crash. We found out over the next few days and weeks Jack was having seizures every 20 minutes so we were straight on seizure medication. Jack was sedated for numerous tests including an MRI and lumbar puncture and from there he was diagnosed with right sided polymicrogyria (the brain has developed too many folds) and partial right sided hemimegalencephaly (one side of the brain has not developed normally and is bigger than the other). Both of these cause seizures that are almost always uncontrolled by seizure medication which was the case for Jack. We got discharged at 4 weeks old despite what still felt like constant seizures and thought we might finally have some normality until 5 days later when we noticed Jack having what we described as the opposite of a startle reflex multiple times after his ‘normal’ seizures. We phoned our epilepsy team and got admitted almost instantly and they added infantile spasms to our already long list. This is where it got more worrying as we read how dangerous these were to development and Jack was having well over 100 seizures per day with the clusters of infantile spasms. We changed meds, upped doses but for us nothing worked so our story took a different turn from most. It was decided quickly that Jack was a candidate for epilepsy surgery as nothing else would stop his seizures. On the 16th of December at just shy of 15 weeks Jack had a right hemispherotomy (disconnecting the right side of his brain). We’re still early in our journey but so far we’re now over 100 days seizure and infantile spasm free, fully weaned off of our first med, starting our next wean in May and Jack is finally developing – he can hold his head on his own, he babbles and smiles constantly, he is almost sitting independently and we have so much hope for his future. Luckily with our infantile spasms we were taken seriously straight away because of existing seizure diagnosis but we know how difficult it can be to get listened to initially so if you think you aren’t being listened to keep shouting until you’re heard, parents absolutely do know their child the best.