A family entered the new year heartbroken after their baby boy lost his fight with a rare genetic condition on New Year’s Day.
Little Micah McEwan lived for just six months after he was born with a severe case of congenital diaphragmatic hernia, which causes a hole in the baby’s diaphragm.
He had to fight for his life from day one, and was placed on life support just 13 hours after being born.
The tot never left the Neonatal Intensive Care Unit (NICU) in Queen Elizabeth University Hospital, undergoing nearly 10 surgeries since his birth on July 5.
Mum Nicole Brown, 34, and partner Ian McEwan, 35, from Drongan have now told of their heartache after spending each day by their son’s bedside.
The tot deteriorated on December 27 with his underdeveloped lungs caused by the CDH struggling to keep up with the rest of his body.
At 6.51am on New Year’s Day Micah sadly passed away surrounded by his loving parents — big sister Brooke, 15, and his grandparents.
Nicole told Ayrshire Live : “We are utterly heartbroken right now, we don’t know where to put ourselves.
“We spent six months there all day everyday with him. It was his home and it became our home.
“He took a dip on December 27, he wasn’t really great at all, things just deteriorated from there.
“He ended up being a big strapping boy, his CDH underdeveloped lungs couldn’t grow to keep up with him.
“He was just too big and too strong that his wee lungs couldn’t keep up.
“We got told they were giving us the weekend if he could even make it to the weekend.
“We were able to be there with him.
“We managed to get our mums and dads in to say goodbye, the hospital was just fantastic, they let them be with us at all times.
“Anything we wanted, the hospital did for us, they were all just amazing with us.
“Brooke was able to come and spend time with her wee brother, she wanted to change his nappy for the last time and change him into his outfit and spend that time with her wee brother.”
The family were able to spend a first Christmas together just days before Micah passed.
Santa visited the specialist unit as the young tot was showered by gifts from loved ones.
A gift was also sent from the parent of a baby who had spent time in the unit previous to Micah.
Mum Nicole said: “It was just so special having Christmas there [NICU].
“Santa came to see Micah, he got loads of presents, he even got a present donated from a baby that was in the ward — a wee glow worm that lights up, he loves things like that he was so happy.
“We got to do all the lovely stuff any baby gets to experience at Christmas, we are so grateful for that.
“Christmas was the first time we returned home in six months so we could catch up with the family.”
Nicole was told at 21 weeks into her pregnancy that her baby had CDH and was given the option to terminate with medics fearing Micah would not survive.
But the determined mum was never going to give up hope and wanted to give Micah a fighting chance.
Nicole said: “I was told he had CDH at 21 weeks, he was only given a 50/50 chance but we gave him that chance.
“That was six precious months we managed to get with Micah, a lot of wee angels with CDH only got a couple of hours.
“If it wasn’t for the amazing team of Drs and nurses he wouldn’t have got six, what they have done is just amazing.
“We wouldn’t change a thing, I would do it all again if it meant I had six months with him again.”
Micha underwent surgery to move his organs down to allow more space for his lungs to grow just days after he was born.
Nicole admits she ‘lost count’ how many surgeries her baby went through in his short life but reckons it is at least nine.
Micah also underwent 20 blood transfusions in a bid to keep him alive.
At one point he was left without life support for 19 minutes after one of the plates on his machine slipped off.
The tragic news of Micah’s passing sent shockwaves throughout the neonatal unit.
Nicole added: “The staff were beside themselves, everyone got so attached to him, they nicknamed him ‘The Godfather’ because he had been there so long.
“The nurses all came and said goodbye to him, his doctor, Dr Neil Patel spent 45 minutes saying his goodbyes.
“He touched the hearts of everybody who looked after him.”
Tributes have poured in from a community left devastated with Micah being described as having the ‘heart of a lion’ and the ‘Pride of Drongan’ with hundreds posting a heartfelt message on social media.
Micah’s courageous battle helped raise awareness for CDH and the neonatal unit which looked after him.
Tens of thousands were raised, with an event night at Shoot Super in Ayr raising an incredible £10,000 for CDH UK organised by close pal Lisa Merry and friends
Micah’s cousin Chloe Duthie walked for 21 hours with 6kg 5lbs on her back – the same weight as the tot and raised £3,000 for the neonatal unit.
And a further £4,000 was raised by pals in Drongan which went towards the Ronald McDonald House for families with children in hospital in Glasgow.
Nicole added: “We couldn’t be more proud of our baby boy.
“He was the happiest, most content wee baby despite everything that was going on.
“You can see just how many people he touched, we are very comforted by the fact he managed to do that.
“We are blown away by the support we have had, we can’t thank all our friends and family enough for taking the time to do fundraisers to try and help us through the hardest six months.
“We can’t thank everyone enough for all their support, all the staff at the NICU were just amazing and couldn’t have done more for us, they were Micah’s and our superheroes.”