Hello, I’m Nicole Rooney. I’m married to Matt and we have two beautiful children, Sophia and Sebastian. I am so pleased to have the chance to tell you about Sophia and Sebastian and how important Children’s Hospice - Horizon House - is to us all.
Sophia is 9 and Sebastian is 5 years old, and we’ve been coming to Horizon House since Sophia was a year old. When I was pregnant with Sophia, everything went well, then two weeks after she was born she started to have seizures - and lots of them. We kept taking her to the hospital, but they couldn’t find anything wrong... We literally spent every day for weeks coming home and going straight back to the hospital because we knew something wasn’t right.
During one visit to the hospital, Sophia had a lot of seizures, and was sent for testing, then we received the diagnosis that she had Polymicrogyria. Polymicrogyria is a brain abnormality, it means some brains have too many folds so they can’t process information as normal and impairs ability. There are different types of Polymicrogyria but it is very severe when it affects the entire brain, this is the condition that both Sophia and Sebastian have. It causes really severe problems such as epilepsy, developmental delay and muscle weakness. I can’t lie - the first few months after Sophia was born were really hard, I was 19 years old and Matt was 24.
When Sophia was 6 weeks old, she was having 50 to 60 seizures a day. It was a scary time for us. When Sophia was 4 months old she needed an operation on her throat to try and help her breathing andat 9 months she was hospitalised for 3 months. She actually spent her first Christmas in hospital. Sophia also stopped feeding normally.
She had to have a tube inserted into her tummy so she can receive food, fluid, or medication directly, although it sounds terrible, Sophia has a better life this way. It was after her time in hospital that we were first introduced to Hospice. Like many parents, after Sophia’s time in the hospital when we nearly lost her, that first conversation about Horizon House was very scary for us.
We thought - like many people do - that Hospice was only for children who were dying - we were so wrong.
We visited Horizon House and we instantly felt that our lives were changing for the better. It really was amazing! From the minute you walk in through the doors all your nerves or worries disappear, it is such a special place.
When we started visiting with Sophia we would all stay as a family and that’s really what we felt like - a family with nothing to worry about except resting, playing and having fun and with the added bonus of having our dinners made for us as well! They take care of everything and I can’t even express how much that means. Sophia has spinal scoliosis, her hips are dislocated which means you have to be so careful when turning her over. She can’t sleep on her back anymore, she can only lie on her side. To know that its these types of issues that her Care team know about and can manage with their expertise really gives me peace of mind - which is something that doesn’t happen often in my life!
Matt and I NEVER switch off and relax. We constantly have to think about the next medication or we are monitoring any new or changing symptoms, or getting ready for the next feed. When we go to Horizon House, all of this is lifted from our shoulders. We don’t have to be on ‘alert’ we can just be Matt, Nicole, and Sophia, laughing, hugging and being together while the nurses and the team take care of us.
We love Sophia so much but before we thought about getting pregnant again, we had genetic testing to see if this is a condition that all our children would have. The results showed that Sophia’s condition wasn’t genetic and after a while we decided to try for another baby.
Throughout my pregnancy with Sebastian I had many scans, but they all had normal results. During one scan, there was some fluid in the brain, but during the next scan it had disappeared so we believed everything was fine.
Sebastian had an MRI after he was born, and it was then that the doctors told us that he too had Polymicrogyria. We were told we were just unlucky for the condition to happen twice in one family. Shortly after Sebastian was born, my mum passed away. It was a very, very hard time for us. Horizon House stepped in and helped again as they looked after Sophia to give us a bit of support (Sebastian hadn’t been to stay yet).
It just showed us that when we needed them - that once again, they were there for us.
Sebastian and Sophia now come to Hospice together and they just love it. They are so close as brother and sister, but they have their own individual wee personalities. Sophia responds to sound, and she will respond to her name, but especially if you sing it! She loves hearing ‘kissy noises’ and strangely loves the noise of coughing - obviously with Covid we had to stop pretending to cough pretty quickly - now we listen to YouTube coughing videos instead - who knew!! - and she laughs and laughs.
On the other hand Sebastian really loves his time at Hospice, he loves getting to use the multi sensory room and swimming in the hydro pool. There is so much joy with them but in order to spend time making them laugh, and finding new things to share, Matt and I need to have the energy every day to care for their medical and physical needs. We can only do this with the support of Children’s Hospice.
We don’t have any family that can help, so without Hospice we would be alone and I don’t believe we could do it without them. They are our lifeline.