Warrior of the Week time ! This week we hear all about the scrumptious Jack, as told by Mum Emma.
Hi, I am Emma. I didn’t enjoy pregnancy much, not due to sickness or tiredness or swollen ankles and the usual discomforts that go along with pregnancy but the fact I had a small bleed at around 6 weeks pregnant. It wasn’t anything significant as the doctors tell you but to yourself it is the worst and most scared you have ever felt. Every time you pee you find yourself not wanting to check the tissue encase there is blood there.
The internal scan (urghhh) was fine and our baby was doing ok, the pregnancy continued and I started getting fat. I do not ever remember experiencing the “pregnancy glow” people tell you about. Anyway I got to 26 weeks pregnant. Got up for my 12hr shift as normal. Was talking to my patients relatives as normal when I started feeling ‘wet’. To my horror I looked down my scrubs and realised I was wet, I was actually very wet. A quick change of scrubs and a sanitary towel in situ I continued what I was doing at work. Convinced I had pee’d myself. After all I was only 26 weeks pregnant !!
A colleague of mine demanded I go to the delivery suite and get checked, it was on the same floor as my unit so I reluctantly walked round to the central delivery suite, rang the bell and told them what had happened. I felt a total fraud being there, I felt fine, no pain, could still feel baby moving. After some poking and prodding and dipstick tests later there was a paramedic crew waiting to escort me to The Rosie centre at Addenbrookes. My waters had broken and my hospital does not have the facilities for a premature baby of under 28 weeks. Of course I hadn’t informed my husband yet as I still thought it was a weak bladder so I called him to let him know and said I would meet him at Addenbrookes.
Racing along in the back of an ambulance with the blue lights and sirens going is actually pretty normal to me except I am not the one strapped to the trolley going backwards usually, I was now starting to feel pretty anxious. I arrived at The Rosie hospital greeted by 9 staff in scrubs, a ventilator bleeping away in the corner of the room and monitors alarming going through their pre use checks…. OH MY GOD DOES SOMEONE KNOW SOMETHING I DONT !!! Moment later my husband arrives, phew ! The doctors explained my waters had broken and baby could arrive anytime. I was ordered to remain on strict bed rest and I was injected with dexamethasone injections which blooming sting like mad. The injections help to strengthen babies lungs encase he/she decided to arrive.
We still didn’t know if we were having a boy or a girl; we had gotten this far without knowing and we wanted to keep it that way. A worrying week of bed rest, stuck in hospital being a patient instead of a staff member really sucked ! But baby was well, my waters had regenerated enough to keep baby safe. Baby’s observations were ok and we were all good to be discharged but on bed rest ! 6 weeks of bed rest later and alternate days of monitoring and blood tests I was admitted to hospital as my infection markers were up. I went into spontaneous labour that same night. I was in pain, No one believed me, I didn’t make a fuss. I don’t make a fuss !!
A night full of discomfort later and the doctor arrived to do his morning rounds, I was 3 and a bit cm dilated ! Straight round to the delivery suite I went. 7hrs after that I was being cut open. Baby wasn’t ready to be born so was breech. They cut me up and down, an inverted T section it is called. My baby’s head was stuck ! 2 attempts of forceps and some tugging they was a dusky, floppy, silent baby. It was a boy !!! It was Jack !
He had some inflation breathes and was rushed The the neonatal unit where he spent the next 3 weeks. Jack was on breathing support for 29hrs and was jaundice. He fought his way into the world. We were told expect to be in for around 8 weeks, jack was ready to go home after 3! He did amazing and improved every single day. We were discharged home, we were told jack was fine. Jack was amazing he was doing well but was obviously behind in his development. He wasn’t rolling over, wasn’t sitting up, the health visitor assured us he would catch up and it was due to him being born early. 10 and a half months after NICU (18 days before his first birthday) jack woke up as normal after his mid morning sleep. WHAT THE HECK was that ?! Ohhh and again. That’s weird, and another !! Ring mum…”mum I think jacks having seizure but I’m not sure, he is breathing and seems ok but he’s done something really weird”. I go to the hospital. Explain this weird movement. Get some crazy looks. Get some nods of the head in agreement. Genetic blood tests were sent off.
We were discharged home the next day. You are allowed 1 seizure without it being diagnosed with epilepsy. 2 days later he did it again, straight back to the hospital ! EEG confirmed focal seizures. The MRI showed periventricular leukomalacia. (Damage to the white matter in jack brain), the lumbar puncture was thankfully normal. We had to get our heads around the brain damage at first, we were crushed !! The seizure, spasms, weird moving things continued !
We were started on Keppra initially. Then sodium valproate added in then Clobazam ! We celebrated jacks birthday, he had 2 seizures that day. He looked worn out, he was agitated and not a happy 1 year old boy. Another few weeks passed and we went back to hospital. These things were not stopping. Something isn’t right ! Instinct is telling me its infantile spasms! I’ve got video after video… but the EEG did not show hypsarrythmia so it couldn’t be right ?!
I joined this group, everyone has been amazing and I have learnt more from any of you on here than I have from any doctor. So yes some nagging and perseverance later and we were diagnosed with infantile spasms last Monday. Jack is currently on high dose steroids and vigabatrin as well as Keppra and sodium valporate as they have to be weaned slowly. Jack is so strong! He has learnt to roll from his back to his front. He is feeding himself in his chair but not sitting unaided. He isn’t talking and is far from crawling or walking yet but in general is the happiest little boy. He gets tired from the medication and some days he whinges and whines all day long but then again wouldn’t we all of our brains were that chaotic inside ?! Up to 10 clusters a day jack was having. I don’t want to jinx everything but we are currently day 6 spasm free !!
I am almost nervous to wean the doses next week. I am convinced we have missed a spasm as it does not seem possible they have stopped but touch wood we think they have He is a tough little boy. He is a little trooper, our little soldier, our warrior !! He makes us proud every single day.