Harry was born in 2018, the final addition to our family baby number 4. Harry was born via c section after a non eventful pregnancy. Soon after he was born it was clear that he was slightly different to our other babies. Harry was very floppy. We just thought he was taking his time getting used to the world. At 6 weeks old Harry was admitted to hospital with bronchitis. After 5 days he managed to get back on his oral feeds and we went home.
2 weeks later Harry had his first seizure. We rushed Harry back to hospital - days of tests, bloods being taken,mri, eeg’s we were told that harry had a benign movement disorder that would be outgrown. We medicated Harry to try and stop the movemts that were extremely distressing for him. Sadly the side effects of the medication were tough on Harry. He slept a lot, slept through feeds and baths - Harry slept all day and all night.
After 3 months we weaned Harry off the medication and things subsided for a while. Harry was awake more and making progress albeit very slowly but progress is progress. Harry continued to be in and out of hospital a lot during his first year - chest infections, high fevers that couldn’t be controlled, bronchitis and pneumonia - it was an emotional rollercoaster.
1 week after Harry’s 1st birthday we were out shopping. We'd done the school run for the older children and we went to IKEA. After leaving the shop on the way back to the car Harry had his first full tonic clonic seizure. It was so unexpected and extremely traumatic to watch. As his mummy I felt helpless and thought my baby was going to die. This seizure was nothing like what he experienced in the past. This was aggressive pulling air out of him turning him grey then blue. To this day it was the most horrific experience I have ever gone through. Once we reached the hospital Harry was sleeping, I was told it was normal. I was pertrafied I didn’t know if he would wake up and if he would be the same little boy ever again.
During the routine tests Harry had 3 more seizures in A&E. These didn’t last as long as the first one but they were still just as scary to watch. Harry finally woke up. He lost a few skills - he couldn’t sit very well and was extremely floppy again. After a few days in hospital lots of tests Harry was diagnosed with Epilepsy. We spent a few days in hospital regrouping, watching every YouTube video on seizures,learning what to do and how to keep my baby safe should this happen again. Harry was started on medication. I was given the leaflets to read on side effects, what to expect, how it helps. A complete minefield of words I had no understanding of. Harry was doing well and he was loving all the attention. We went home. Harry managed the medication really well. His sleep was affected by the medication but I didn’t mind one little bit. I watched Harry every second of every day and night. He would not be out of my sight for a second.
During the second year Harry’s had 30+ tonic clonic seizures. Several were prolonged and we ended up as inpatients. Harry struggles with fighting virals. He gets wiped off his feet for weeks at a time. During this last year Harry has been given a second medication to try and get some control over his seizures, he has responded really well. He is still having seizures but not tonic clonic ones. Currently we are 154 days without tonic clonic seizures but we have a few absent and myclonic ones several times a week. Harry has a fluid tube as it was discovered that Harry has an unsafe swallow, he loves his tube and “beautiful plaster sticker”. He is such a happy boy working really hard trying to learn to weight bear and develop his speech. Harry had a biopsy last week to see if he has Hirschsprung’s disease. We are waiting for the results. Harry’s story is just starting out and we are so so proud of how resilient and amazing he is.