A Scots baby who was born with a rare genetic condition which left him in a battle to stay alive has already undergone five operations within the first eight weeks of his life.
Little Micah McEwan was born on July 5 with a severe case of congenital diaphragmatic hernia, which causes a hole in the baby’s diaphragm.
Micah’s parents, Nicole Brown and Ian McEwan, had never heard of the condition before being told 21 weeks into the pregnancy that their baby had CDH.
They were then given the chance to terminate the pregnancy at that point – but Nicole, who had previously suffered 15 miscarriages, had insisted on giving her son a chance.
Nicola, from Drongan in Ayr, explained: “It can be a 50/50 chance of survival. We knew that with Micah, but we wanted to give him that chance, he deserved that chance.
“They offered us termination of the pregnancy after we found out about his condition at the very beginning. We were told we could terminate and that he probably wouldn’t survive.
“It was so hard for me to hear because I’ve had 15 miscarriages before falling pregnant with Micah, so it was a huge blow to hear he had this sort of condition.
“It was a really hard pill to swallow but I had to give him the chance to fight, whether he was alive for five minutes or five hours, I had to.”
When he was born, Micah only had 25 per cent lung volume which left him with a low chance of survival.
Nicole was told the condition could be mild, moderate or severe – with Micah’s case being categorised as severe after he was born.
In severe cases of CDH, babies can die within hours.
After being delivered at Queen Elizabeth Hospital in Glasgow, Micah went onto life support while his helpless parents waited anxiously to see if he would pull through.
But defying all odds, Nicole and Ian’s ‘wee fighter’ underwent major surgery just days after he was born that would allow his lungs to start growing.
Speaking of facing the reality she could lose Micah, Nicole said: “It was the worst thing in the world. We felt like the ceiling was collapsing in on us. It was horrible.
“When Micah was born, we had around 13 hours with him before he had to go on a life support machine and he was on that for two weeks.
“He was born on the Monday and by the Thursday he had had an operation to move all his insides back down.
“As soon as that happened, it means his wee lungs can start to grow as he grows.
“We had to do major surgery because he had seven-part organs in his chest. They got everything down nicely but couldn’t get his wee tummy closed because it just wasn’t big enough to hold everything, so they had to put a parch over the outside.
“That remained there for about three weeks until he was big enough that they could close his tummy over.
“When he went onto his oxygen there were touch and go moments but he handled his surgeries brilliantly.”
Congenital diaphragmatic hernia is a rare condition affecting around one in 2000 babies and results in the intestines – and sometimes the stomach – entering the chest cavity and preventing lung growth.
Micah has already undergone five surgeries during his short life and has also been on dialysis for his kidneys.
But this wasn’t the scariest part of their experience for his mum, who recalls the moment he suddenly had to be taken off life support.
Nicola added: “Once, one of the plates actually started to fall off his breathing machine, so he was off his life support for 19 minutes at that point.
“That was probably our scariest moment.”
Now the family is determined to raise awareness about Micah’s condition and help other parents feel more hopeful when they are given an antenatal diagnosis.
While he may not be able to come home while he remains on ventilation, Micah’s parents are looking ahead to his road to recovery as he continues to exceed expectations.
The family has also praised the staff at the hospital’s neonatal intensive care unit with Nicole’s cousin, Chloe Duthie, raising nearly £3,000 for ‘Micah’s heroes’.
Speaking about the care Micah received, Nicole said: “They save his life every day, every day. Unless you’re in that situation you don’t realise that these people are superheroes walking about.
Did you know you can keep up to date with the latest news by signing up to our daily newsletter?
We send a morning and lunchtime newsletter covering the latest headlines every day.
We also send coronavirus updates at 5pm on weekdays, and a round up of the week’s must-read stories on Sunday afternoons.
Signing up is simple, easy and free.
You can pop your email address into the sign up box above, hit Subscribe and we’ll do the rest.
Alternatively, you can sign up and check out the rest of our newsletters here.
“There’s nothing we can do to repay them and they just do it as a job but every one of them takes it personally and they’re saving our kid’s life.”
You can donate to the fundraiser for the NICU at Queen Elizabeth Hospital here.