A grieving mother hopes sharing her story of losing her son at just 100 days old will raise awareness of the rare condition that took him, and the charity that is helping her get through the pain.
Baby Axel Christie went through more in the 100 days that he was alive than an adult could in their entire lifetime. And he showed more strength than most adults could ever hope to muster.
Now his parents, Claire and Mervyn, hope his story will give people in a similar situation the courage that he showed.
Having had two children with no difficulties, Claire wasn’t instantly worried when doctors thought there was a problem during her routine 22-week scan.
But following an MRI scan at 27 weeks, the family were dealt a blow when the baby was diagnosed with congenital diaphragmatic hernia (CDH), which causes defects in the diaphragm, on the right hand side of his body.
It meant the youngster was born with his liver, bowel and small intestine too high up in his chest which made it difficult for his lungs to grow. It is a condition where the cause and cure are both unknown.
It occurs in approximately one in 2,500 births and accounts for around 8% of all major congenital abnormalities. And although it is as common as cystic fibrosis, it is less well known.
“When I started researching it, I thought ‘what is this?’ Then I found this story from the One Born Every Minute TV show, in which a baby had CDH and I realised I had seen that episode and knew the outcome,” said Claire, 36, of Udny Green.
“That was when it did get a bit scary, because that baby was a right-hand CDH baby as well. As far as I am aware, it’s the only baby the TV Show has shown that has passed away.”
Claire and Mervyn were told that their baby had a 20% survival rate, but they were determined never to give up hope. Claire found a number of groups through the charity CDH UK, meeting other families in similar situations.
“Instantly, I said that this baby was going to fight it. I just knew from the groups that I was involved in that every CDH baby is different. A lot of people were given low survival rates and had better outcomes when their babies were born. You can never really tell the outcome of CDH until the baby is born. I had hope; I thought he’d survive it.”
Claire said that, while she stayed strong – even while friends and family broke down around her when she told them the news – it was when she saw the intensive-care unit at Glasgow’s Southern General that reality hit her.
“We went to Glasgow the night before I was booked in for a caesarean section and we got a tour around the intensive-care ward,” Claire explained.
“I thought I was fine, but then you hear the bleeps of the machines and you see the reality. You see it on TV, but you don’t know what it really means until you are there; I just broke down. I couldn’t speak, knowing that the next day my child would be in there. You hide the reality in a way, I guess.”
Axel was born by C-section on February 5, weighing 7lb 8oz. But instead of being cradled in his mother’s arms like any normal child, he was whisked away to Yorkhill Hospital and his parents were told that his chances were not good.
During his first days, he was given a heart and lung bypass. But a few weeks later, he started experiencing other problems, including abnormally high blood pressure, and he was losing around a litre and a half of fluid a day. The tiny baby had an aggressive five-hour operation to try to resolve the problems.
Claire said: “We were told he wasn’t doing well. But then, after the weekend, he seemed to turn a corner and he was back to being this bright-eyed boy. They decided to do another similar operation.”
The doctors were about to go ahead with a third operation when they discovered clots in Axel’s kidneys causing them not to work properly. At 14 weeks, he was about to go for his third operation when a CT scan revealed more clots in his head. It was then that Claire and Mervyn were told by doctors that they would not be able to save him.
“His body was just shutting down,” Claire said.
“We were told to bring the family down and say our goodbyes. We never really got to hold him throughout it all. We never got our first cuddles until 10 weeks. For me, that wasn’t a problem because we wanted him to be comfortable, but when we got him the last time we were told that he needed the cuddles and I felt that, too.
“So he got his first cuddles at 10 weeks and we never got to hold him until four weeks later when he was passing.
“I always said he went through more than any adult has to in a lifetime. It’s amazing what these babies can put up with. Each time he went through something, I saw the fight in his eyes and thought ‘yes he can do this, I know he can’, but when we were told the last time, I could see he had just had enough. He was a completely different boy in that last week. His bright eyes had gone.”
Axel passed away on May 14 at 100 days old. Claire said it was “devastating” and that nothing could prepare you for something like that.
“He was an amazing boy and his eyes told the world everything; he was always so happy,” she added.
Through the help of her friends, family and volunteers at the CDH UK Charity, the family has been able to start the mourning process. They are also keen to raise awareness of the condition and the support that the charity offers.
As well as researching the causes and a cure of the condition, CDH UK also offers support to families through the whole process from being diagnosed through to bereavement and, for the lucky ones, how to live with CDH after leaving the hospital. It also offers funds for people for transport and accommodation while their child is in hospital. For a small charity, it does a lot and Claire is keen to ensure more people are aware of it.
A number of events have been held to raise money for the charity including a concert in Udny Green hall. Music on the Green featured performances from Con Anima Chamber Choir and Leighann Esslemont, who penned a special piece called Axel’s Song of Hope in memory of Axel Christie.
You can hear the song here:
To contact CDH UK, visit www.cdhuk.org.uk and to donate, go to www.mycharitypage.com/TeamAxel.
To find more about CDH, read our interview with Beverley Power, secretary and trustee, of CDH UK, who gives some insight into the condition, here:
http://bit.ly/UNaYu0