Linus was born on Friday April 13th, 2018 by caesarean section and weighed 3040g and was 49 cm tall. Our pregnancy was normal and uncomplicated and prenatal scans showed that Linus was developing normally.
Only once Linus was born did we notice that he had club feet. Following this initial observation, the doctors drove us crazy and seemingly found more and more abnormalities. They detected something wrong with his heart, then with his pelvis and on it went.
I was only allowed to hold Linus in my arms for 5 minutes on request until he was taken away by a huge team of paramedics and doctors and relocated to another hospital. I was only transferred there the next day.
It was clear something was wrong with Linus. He was simply too calm and spat out milk as soon as it entered his mouth. He ended up being admitted to intensive care unit for a full week and various examinations were carried out. None of the doctors could tell us what was wrong with our little boy. After no diagnosis could be reached at the hospital, Linus was transferred to a special clinic where we were admitted for another 2 weeks without any results. We desperately tried to improve Linus’ food intake and it had a degree of success and we were finally allowed to go home.
With each passing day, we noticed more signs which confirmed that something serious was wrong with Linus.
Linus twitched very often, breathed weirdly and continue to spit out everything he ate every few minutes. The paediatrician advised us to feed Linus with special thickened milk and thankfully this worked better. To this day he still gets this milk and although it takes a long time to have it, it works really well.
After Linus was allowed to go home, we had to drive 3 hours by car each week to plaster his legs to improve the position of his feet. On June 20th, 2018 we were at the hospital once again and by chance an appointment became free for his upcoming operation on one of his feet so we decided to stay there. Linus also had an umbilical hernia, which was also operated on. He recovered well from both surgeries.
Prior to this admission to hospital I have mentioned to the doctors several times that I think Linus has some kind of seizures. Unfortunately, doctors ignored this for a long time and it was only after a nurse saw one of his seizures and informed the doctor, that actions were taken. We were transferred to the neurological ward and so 2 days in hospital became 2 months.
We are now in another hospital and feel much better cared for here.
Our path is very rocky and difficult to walk but we love our little sunshine and we are thankful for every day that we have him.
Linus was examined on a daily basis and it quickly became clear that Linus had epilepsy. However, we had no idea where it was coming from or what the root cause was.
Linus was started on 4 different medications including an infusion and antibiotics.
During this period Linus slept for the entire day. Nothing helped and nobody could tell us what was going on with him. We were not allowed to open the windows or leave the room for many weeks. And in that hot German summer of 2018, other children in the neighbouring beds were very disruptive which was also very tiring for Linus. I was ready to sleep in the hallway with the little one rather than in the room. As soon as Linus woke up from sleep, he had tons of seizures. We then started genetic testing and the doctor said we had about a 50% chance that we would find something. We had been home for 3 months when the call came through telling us that Linus has been diagnosed with WOREE Syndrome. This diagnosis took away our last hope that everything will be fine…
Gradually we discovered all the challenges facing Linus. He has club feet, he is blind, has refractory epilepsy and no body control whatsoever. He will never be able to sit, crawl, walk or speak. We now live with this reality every day and trying everything we can, including many different medications, to try to make life as nice and pleasant as possible for Linus as long as he is with us.