As Nicole Brown gazes at daughter Miah, it’s impossible not to see the baby boy she held in her arms for the last time a year ago. Her son Micah was born with the rare genetic condition congenital diaphragmatic hernia (CDH) and, after a six-month battle, his little body could not take any more and he passed away on New Year’s Day.
Just 10 months later, his miracle sister arrived and Nicole and her partner Ian McEwan said she is a gift sent to them by their brave son so they did not face the anniversary of his death alone. Nicole, who endured 16 miscarriages before Micah was born, told how she is counting her blessings and celebrating two angels – “the one in Heaven and the one on Earth”.
The makeup artist, from Drongan, Ayrshire, said: “New Year’s Day is going to be bittersweet. Last year we had just celebrated Micah’s first Christmas but then a week later we lost him and our lives shattered into a million pieces.
“Never in our wildest dreams did we think that just 12 months after our world fell apart we would be holding his perfectly healthy little sister in our arms. Ian and I are convinced Micah sent us Miah because he knew we wouldn’t be able to get through this year without him so now we have two angels – one in Heaven and one here on Earth.
“Today is going to be one of the hardest days we have ever had as our precious baby boy is not here and there will be more than a few tears shed but our wee warrior Micah was the bravest person we have ever met and we will always celebrate his life rather than mourn it. We smile when we think of him, especially when we look down at his little sister – his special gift to us.”
Nicole, 34, found out at 21 weeks into her pregnancy that her baby had CDH, which means the diaphragm does not form properly and allows the abdominal organs to pass into the chest cavity, putting pressure on the lungs. The couple were given the option to terminate the pregnancy, with medics fearing Micah would not survive, but they refused to give up hope and said he deserved a fighting chance.
Nicole said: “I knew there was something very wrong when I saw the scan as his heart was in the wrong place and his lungs looked like scrambled egg. Doctors told us he probably wouldn’t survive birth and offered us a termination but, after all the miscarriages, I was determined to take a chance on him and fight for him, even if it meant he only lived for a few minutes.”
Micah was born on July 5, 2021, and 13 hours later was placed on life support in Glasgow’s Queen Elizabeth University Hospital, where he spent the next six months fighting to survive. Just days after his birth, Micah underwent surgery to move his organs down into his abdomen to allow more space for his lungs to grow.
Nicole said she “lost count” of how many surgeries her baby went through in his short life but said it was at least nine. He also needed 20 blood transfusions and spent eight weeks on dialysis.
Nicole, stepmum to Ian’s daughter Brooke, 16, said: “Micah was a fighter. The things that wee soul had to go through were unbelievable. We called him our wee lion cub as he had the heart and strength of a lion. It was the worst experience of all our lives. We lived on our nerves for six months. It was so frightening.
"We spent every day at the hospital, holding his hand and talking to him. He was the happiest wee baby. We had a lovely Christmas with him last year. Then, on December 27, he took a dip and things just deteriorated from there. He ended up being a big strapping boy and his CDH-underdeveloped lungs couldn’t keep up.”
Micah passed away at 6.51am on January 1, 2022, with mum, dad, big sister Brooke and his grandparents by his side. Nicole said: “We were all heartbroken but we wouldn’t change a thing. We would do it all again if it meant having six months or even six minutes with him again. He touched so many lives.
“We wouldn’t have had any time with Micah if it weren’t for the wonderful doctors and nurses at the hospital. They will always be angels to us and we will never be able to thank them enough.”
Nicole and decorator Ian, 36, didn’t know how they were going to carry on but, unknown to them, there was a little bit of magic waiting for them around the corner. Nicole said: “Micah’s funeral was on January 18 and at the end of that month our family paid for us to go on holiday to Tenerife.
“In February I found out I was pregnant. I could not believe it. I was overjoyed and terrified at the same time. All my previous pregnancies did not get past 12 weeks and then Micah only lived six months. Every time I went for a scan I felt sick but every one showed the pregnancy was progressing well and all the baby’s organs were in the right place. I was in total disbelief.”
Miah Brooke Lisa McEwan arrived by C-section on October 27, weighing 7lb 7oz, and has been spreading joy ever since. Nicole said: “Considering all the miscarriages and then losing Micah, we feel having a healthy baby just 10 months later is a real-life miracle that her brother sent us from Heaven.
“Miah is just perfect and her name is a tribute to him. She will grow up knowing all about her brave big brother who fought so hard to stay with us. We have photos of Micah all over the house and we talk about him every day.”
Nicole, Ian and their family and friends are passionate about raising awareness of CDH and together have raised more than £20,000 for the Queen Elizabeth’s NICU unit, Ronald McDonald House and CDH UK.
Nicole said: “Before Micah was born, we had never heard of CDH, which affects between 2000 and 4000 births in the UK, so we want to raise as much awareness as we can and help other families like ours. My aunt Liz Fulton has named her cafe in Coylton, Ayrshire, Me’s after Micah and is constantly holding fundraising events for CDH.
"He may be gone but his legacy lives on through his sister and his memory. Micah was sent to us for a reason. He even took part in medical trials which hopefully will help other babies in the future. The festive season has been a rollercoaster of emotions but we have been celebrating our two little miracles and counting our blessings.”
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