This Mother’s Day Kerrie Cartmill is excited about her plans. It’s nothing major. No fancy afternoon tea or breakfast in bed most likely she will just enjoy spending time with her husband, Stuart and their son, Matthew.
“We’ll just have a low key day and spend a bit of time together, just enjoying that we’re not having any appointments or anything. We’ll just take it easy.”
It will certainly be cosier and calmer than her first Mother’s Day last year which she spent in the family room of a neo-natal intensive care unit when her son Matthew was just weeks old:
“They let us go into the family room together; we were able to wheel him down. They had a family room in the neonatal unit, and we were allowed to spend the day together there. Which was really nice of them and they had taken a wee picture of him and made me a card. We were so well looked after.”
Kerrie has a strong appreciation for just having time at home with her family. The very fact of making plans is a something of a luxury for the Cartmills. Until recently she was loath to even plan his first birthday. Thankfully they were able to celebrate this major milestone, this week, at home with a teddy bear’s picnic:
“I thought I might’ve been a bit of an emotional wreck but actually it was great, we were so busy looking after all our nieces and nephews and everyone. It was probably a day that I hadn’t even planned for. Even at Christmas time I was afraid to plan because I thought something was going to happen to him.”
The fact that Matthew is one year old now is an incredible thing as he was born with a rare genetic disorder called Trisomy 13. The condition is so rare that when he was born he stumped the doctors caring for him. Online the outlook is bleak with some sites stating that more than 90 per cent of children born with Trisomy 13 will die in their first year.
“When he was born, he really was a mystery to them; they really couldn’t work out why he was having so many difficulties. He was on full life support and even then struggling to keep any oxygen or heart rate.”
Genetic tests were done, but it wasn’t until three weeks later that the Trisomy 13 diagnosis was confirmed.
“We didn’t have a clue what that was, and it didn’t even mean much to the doctors either, they’d never seen it.”
During her pregnancy, Kerrie was told that there were some abnormalities detected in her son. Genetic tests were offered then but with them came the risk of early labour which would’ve undoubtedly resulted in a miscarriage. Either way Kerrie already knew what she and husband, Stuart, wanted.
“We turned down the genetic tests as it wasn’t going to change our plans anyway.”
The pregnancy was incredibly stressful with weekly scans, endless appointments with specialists and in the end it was still impossible to know what Matthew’s health complications would be until after he was born.
“It was all so unknown. We didn’t plan anything for the house. We didn’t buy anything. Because we weren’t really sure that we would get to the end of the pregnancy. It was quite strange because people weren’t asking us “how’s everything going, how’re you feeling” because they knew something was up. The unknown was just so frightening. We planned for the worst which thankfully didn’t happen, and Matthew made it here.”
At 35 weeks, Matthew was found to be in distress, and Kerrie was admitted to the hospital for an emergency caesarian section. Kerrie found the experience to be profoundly traumatic.
“The birth was horrible, I was just terrified. The room was absolutely full of people. Everyone was waiting for this special baby to be born, and nobody really knew what was going to happen. He was my first so I don’t really know how you should be feeling, but I wasn’t excited. I was terrified.”
She also recognises that without this traumatic early delivery, Matthew may not have made it.
“It was a saving grace that he was born then; it seems like a lot of these babies are lost in pregnancy, or aren’t born alive. He is the only one ever in Northern Ireland to be born alive, so it’s not good statistics.”
In the first hour after his birth, Matthew appeared to be doing well, and then suddenly he stopped breathing. The doctors began to work on the baby, still with no idea exactly what Matthew’s condition was.
“They worked on him all day and we didn’t see him again until that night. It was a horrible day and a horrible night. It was very traumatic.”, Kerri recalls.
The first few weeks of Matthew’s life were agony for the new baby and his parents, “we were afraid to leave the hospital, we literally only went home to sleep and wash”. Babies with Trisomy 13 can suffer a huge range of complications. He was receiving round the clock care, being fed by tube and his condition was critical. He needed to be resuscitated many times. He suffered many violent seizures during which he would turn blue, and his heart would stop beating. He also had apnoea, meaning he would frequently stop breathing. Also, his heart rate was constantly dropping.
Even when the diagnosis came, it was hard to know what the long-term ramifications would be.
“I did the stupidest thing ever and I googled it. I never ever should have googled it because the statistics on the internet are really, really desperate. They couldn’t be any worse.”
“Everyone was always very cautious about making any predictions for us, positive or negative because there’s no experience of this condition.”
But Matthew has astounded everyone with the progress he has made in the last year. Despite about 170 hospital visits, the Cartmills are optimistic about their “miracle man”.
“We took him home after 38 days. He was feeding by himself. He’s still now on his respiration monitor which is a bit of reassurance. And he is still on a lot of medication.”
The respiration monitor goes off the odd time, and Kerrie and Stuart are trained to resuscitate their son though thankfully they have never had to do this. “Mostly they are false alarms, usually he’s trying to do a wee bit of business and he’s just holding his breath”, Kerrie tells me laughing.
Kerrie laughs a lot, which is amazing considering the year she has been through. I get the sense that there is a lot of laughter in their family. She clearly knows that life is about cherishing the good moments, like Matthew’s first smile and she is even light hearted when describing the eye patch he has to wear for complications with his sight, telling me “he’s a cutey altogether with his little patch on”.
“We are very positive about this man, he really couldn’t be doing better, considering all that he’s been through. We don’t really have the time to be stressing, yes I do carry a lot of stress about him but we don’t have the energy to waste on that sort of thing. You’ve just got to keep going with it.”
“He’s loads of fun; he has his own wee personality, and he keeps up with the craic all day long. He’s gorgeous, and he knows it! All the nurses just love him.”
“We didn’t think about sharing our story until recently but I think Matthew could give hope to a lot of families, anyone who has a sick or unstable baby. Even if they get a really bad diagnosis, it doesn’t have to be a bad prognosis for them. That’s why we’ve started this campaign to try and raise a bit of awareness and also to raise a bit of money so that we can buy sensory toys and therapy equipment that will help Matthew.”
Despite the severity of Matthew’s diagnosis, Kerrie feels that there is a huge lack of support for families with ill children.
“When we took him home, we didn’t have nurses in the house or anything, we fully took over everything, his breathing monitor, his medications.”
“Recently we began to question why we’ve not had more input, why we are carrying all this by ourselves? Anyone I’m talking to says it’s the same story, nobody is getting any help with their disabled babies, it’s absolutely ridiculous.”
The family have received amazing support from family and friends which has had a huge impact on Matthew’s progress, but they need help in the long term.
“People have been so good, and we’ve had lovely messages of support but Matthew’s going to need long term help.”
Kerrie’s brother, Jamie, has set up a blog for Matthew to help raise awareness for Trisomy 13 and funds for Matthew. The Cartmills have received invaluable donations so far but for them, the road ahead is a journey into the unknown. There isn’t a set path to follow as there is so little precedent for babies with Matthew’s condition to grow and thrive like Matthew has. Still Kerrie’s positivity comes across when she talks about the future.
“I think we are over the worst. After the last year, I feel like hopefully we can get through anything.”
To donate or read more about Matthew visit Matthew’s Journey.
See also Trisomy.org
