Bart tells us about his son Alek and the effect having a child with an undiagnosed condition has on his family.
‘Ola had a horrible pregnancy. She was really ill for most of it and Alek was delivered by emergency c-section a month early. He spent one week in neonatal intensive care unit then three weeks on a ward (check) before coming home.
We were so happy, we thought everything would be fine now he was home with us but he was waking up every hour through the night and cried all the time. It was exhausting. We told our health visitor that we thought something was wrong but she put it down to first time parents. Ola was at home looking after him all day and she couldn’t put him down, even for a second. She had to carry Alek everywhere because if she put him down, he would scream.
We both work at Exeter hospital and they threw us a baby shower. One of the physiotherapists came and she asked us if there was something wrong with Alek. He was 6 months old but still couldn’t sit up, crawl or turn over and she’d noticed. He was very floppy and he couldn’t support himself. We went to the GP but were told there was nothing wrong with him but if we were still worried, we should find a reason to go to A&E. We went and a consultant asked how old he was and when we told him, he was very surprised that Alek couldn’t even sit up. They ordered tests and we stayed in hospital for 4 weeks. They tested everything; heart, bloods, an MRI. When we went back to get the tests, we were told the MRI showed he had brain damage.
From there, Alek has muscle and skin biopsies but they came back normal so now we are waiting for a genetics test to see if that will provide a diagnosis. Alek is confusing doctors because he can’t do anything for himself but he has very good interaction with us. He’s very responsive when we speak to him.
Being the parent of a child like Alek is very difficult. Every day we’re waiting for news about what’s happened and why. Not knowing what to expect with Alek the next day let alone the future is really hard.
Alek takes everything; liquid, solids, medicine, through a tube in his stomach because he has problems swallowing. He’s been fed this way for nearly 2 years now. Before, he vomited a lot and was very underweight. He has 10 medicines a day to help relax him as he suffered from bad muscle spasms as well as physiotherapy sessions every week.
Alek’s condition really affects our family life. We simply don’t have one. We can’t leave him with anyone except his carer who comes 3 times a week. We are worried about having another child in case this is a genetic condition.
Despite all this, Alek is a really happy little boy. He laughs a lot, loves music, playing rough and tumbles and water, bath time is his favourite! He also loves attention! That gives us a lot of pleasure and knowing that he is happy makes it a bit easier for us.