Zack’s story is written by his mum, Libby. A stroke around the time of birth or in the first few days of life is one of the most common underlying causes of infantile spasms developing at some point in the first year.
Approaching the end of a completely normal pregnancy something was suddenly not quite right. Zack’s normal movements seemed to turn into sudden really tight pains, and we went to get checked.
Zack was not ok. He was born by emergency C-section within 27 minutes of arriving at the hospital.
Once he was born we thought everything was now ok except from slight bruising on his left arm (we didn’t know until months afterwards that he received rescue breaths).
It transpired over the course of the night that Zack had a blood clot in his arm, and the next day we found out he needed to have it amputated. In the lead up to the amputation, he received an ultrasound of his brain and the doctors caught something worrying on the results. Zack then went for an MRI which showed he’d also had a blood clot on his brain. A neonatal stroke in the womb had caused damage to both sides of his brain and caused him to lose an arm. We were devastated.
We found out that Zack would likely have cerebral palsy and could potentially have seizures later in life.
With cerebral palsy looming over our heads we were already concerned about his development, he was behind in everything, and just starting to lift his head up for short periods at 5 months old. We noticed he seemed to get worse and was being sick a lot and all of a sudden he began doing these strange convulsions that instinctively I knew were seizures even though they were nothing like I’d ever seen. We obviously now know these were infantile spasms.
Knowing he was having seizures, but not being believed by the A&E department was awful. After standing my ground (and fudging the facts a little in order to be taken seriously) we were admitted. Seeing our little boy have these awful spasms that afterwards would really upset and confuse him was just more heartbreak. Really quickly the time between episodes decreased and the length of time they lasted increased. When was he going to get a break?
Thankfully his IS was diagnosed within a couple of days and he began treatment with vigabatrin and steroids right away. A few more days after that the spasms stopped. It was then two months of no smiles, no anything really. He was a shell of his former self. The few skills he had acquired had been taken by IS. Due to the steroids he put lots of weight on. We had no sleep with the around the clock medicines, and constant breastfeeding, which was his only comfort. It was truly a miserable time.
However, his smiles came back, and very slowly he has gained some skills since stopping all treatments after 7 months. Our little superhero is just over 2 years seizure free. It doesn’t stop us overanalysing every strange moment he does, or worrying every time he gets ill, which is a lot, but he is so far so good.
Unfortunately, we didn’t find out about UKIST until we went for a check up with Zack’s neurologist. Joining the group sooner would have meant we would not have felt so alone for quite as long. They have always helped us with any worries we have, whether it be medication queries or ideas for how to help Zack’s development. When Zack has ever done some odd movements, UKIST were there to ease our concerns and give helpful advice. We know we will always have allies in the group and hope to meet the other wonderful families one day.
Zack is working very hard to learn to sit and just this month he sat for 14 seconds by himself! He can roll to his front and back to his back again and can weight bear on his legs with support to his trunk.
Zack has a recent, official cerebral palsy diagnosis as well.
He absolutely loves bubbles and dancing to music, and is the smiliest boy ever.
We have never found out a reason for his blood clots, just a freak accident. We have found out there are other families it has happened to, where their child lost a limb due to a neonatal stroke and also that many children had IS because of a neonatal stroke.
