‘Kian was my miracle baby and suddenly he was being taken away from me’
A DUNSANY mum who tragically lost six babies before the birth of her “miracle” boy earlier this year has opened up about the devastation of her son being diagnosed with a rare incurable condition when he was just a day old.
Early in 2019 doctors told Melissa Mahon (34) that she would never conceive again due to a having a condition which occurs as a result of multiple miscarriages.
Heartbreakingly Melissa suffered six miscarriages over the space of five years, losing her first baby when she was already five months pregnant.
Having given up on the hope of ever becoming a mother, Melissa and her partner Mark Gaughan were stunned when she fell pregnant last summer giving birth to little Kian on 4th March.
But delight turned to devastation when Kian was taken from the distraught mum a few hours after he was born and rushed to intensive care before being transported to Our Lady’s Children’s Hospital in Crumlin.
A biopsy later confirmed that the precious boy was born with Hirschsprung’s disease, a rare birth defect where nerves are missing from parts of the intestine.
Kian was the first baby in Ireland this year to be born with the condition that affects just 1 in 5,000 babies.
His parents spent almost four months manually washing out his bowel three times a day until he had his surgery on July 10th to remove the abnormal section of the colon.
Speaking on the family’s emotional journey Melissa said:
“Kian was born early on a Wednesday morning and there was no bother on him but he didn’t pass a stool and by the Wednesday night he was throwing up all of his bottles.
“By Thursday he got sicker and he ended up in intensive care in the Rotunda and by Thursday night the medical team called us for a meeting to say that they had found a shadow on Kian's tummy and bowel and that he was going to be rushed to Crumlin during the night.
“It was devastating, I was told that I couldn’t conceive and Kian was my miracle baby and now suddenly he was being taken away from me.
“I couldn’t go with him because I had a C section and Mark was only allowed follow the ambulance because of Covid-19 restrictions.
“He had to get a biopsy and there was a three-day wait to get the results, during that time he was extremely sick, he was in an incubator and had to be peg fed.
“To see how sick he was with tubes everywhere was heartbreaking.
“The results came back and he was diagnosed with Hirschsprung’s disease, it was hard to accept but at least we knew what we were dealing with.
“The medics had to do bowel wash outs on him and we had to learn to do that before he could come home and we did that three times a day for four months.”
At four months old, little Kian underwent a five hour 'pull-through' operation where a surgeon removes the affected part of the bowel and then connects the healthy section directly to the anus to allow faeces to be passed.
“The day of his operation was the longest five hours of my life. When your baby is taken off you at the door of the theatre and put under anaesthetic, that is gut wrenching.
“Thankfully it was a success and he went to the toilet himself the next day.”
While the disease is not life threatening, sufferers are at risk of an infection called enterocolitis that can be fatal according to Melissa.
“Please God that will never happen Kian but it is something that he will have to live with for the rest of his life.
“The next five years are going to be the hardest, we won’t know until he starts potty training how he will be affected.”
It has been a long road for Melissa and her partner Mark who were told they’d never conceive another baby just last year.
“I have Polycystic ovary syndrome and lost six babies before I had Kian, the first one was at five months and the rest were between eight and twelve weeks.
“I was told at the beginning of last year that there was no chance that I’d ever get pregnant, that was heartbreaking and I just gave up.
“When I found out I was pregnant it was like winning the lotto.
“The Rotunda were wonderful and I was in every two weeks for scans and I was on medication for the first three months to hold Kian in place, it was a pure miracle that he stayed.
“We can’t get over how strong he is, he’s six months old now, he is meeting all of his milestones.
“Normally babies with this disease can be a little slower with growth but Kian has defied all odds.
“He has never given up; he is our little fighter.”
Grateful uncle's 10,000ft skydive in aid of Crumlin and CMRF
Colin Gaughan is preparing to take on 10,000ft skydive this Saturday September 20th to raise much needed funds for The Children’s Medical & Research Foundation at Crumlin Children’s Hospital.
The children’s hospital is close to Colion and partner Lynda's hearts with Colin’s six-month old nephew being cared for there when he was diagnosed with Hirschsprung’s Disease at just one-day old.
Lynda’s brother Shane who sadly passed away just one week after Kian was born at age 33 also attended the hospital as a child.
Colin says it’s their way of “giving back” to the great work the medical teams carry out there. He said:
“There are 25 of us doing it on Saturday morning as part of a challenge organised by blogger Aoibhe Devlin.
“We are doing it to raise awareness of Hirschsprung’s Disease and to highlight all of the work that Crumlin do for all children and give something back to them for all they have done for both of our families.
“I’ve got eight nephews and nieces and I have a special connection with them all but the other six that were born before him and one since thankfully they have been born healthy and when you hear straight away the child only a day old has been rushed to Crumlin your heart jumps into your throat.
“Thankfully he is well on the road to recovery now and he will be there when I touch the ground on Saturday which will mean the world.”
To donate search “Skydive for Crumlin” on justgiving.com