A COURAGEOUS mum told of how her baby defied the odds to undergo heart surgery after being told he would not survive a common cold.
Joan McCarthy from Timoleague showed considerable bravery from the day her baby Donal - now 14 months old - was born. Initially, Donal's Down syndrome diagnosis took some adjusting for Joan, one of the mothers featuring in an Evening Echo two-part series highlighting the little fighters of the Down Syndrome Centre on Forge Hill.
The recently opened facility provides practical support for the families of children with Down syndrome.
"When Donal was born I could feel the mood change in the room," she said.
"I asked what was wrong and was told they were doing some tests. When three paediatric doctors walked into the room I sensed there was something wrong. The second they placed Donal on my chest I knew he had Down syndrome. I actually finished the midwife's sentence when she told me he had facial traits of the condition. I think my husband was shocked at how eerily calm I was."
The next few days turned into a whirlwind for the family.
"All our friends and family arrived to see us on the Thursday and Friday but we decided to take the Saturday for ourselves.
"We spent that whole day talking things through. When you hear that your child has Down Syndrome, you are grieving the baby you thought you'd have. By the time Sunday arrived, we were so happy. We knew that no matter what, Donal was our baby and we would always love and adore him. Our attitude was "we can do this."
However, just a day later the couple was dealt another blow.
"On the Monday, our hearts broke. We were informed that he was very sick with a heart problem. Donal's heart was failing. From that day on, Down syndrome took a back seat. This was our priority."
The condition Donal was diagnosed with was Atrioventricular septal defects (AVSD), a relatively common family of congenital heart defects.
"Donal's condition was causing blood to flow into the lungs. He was 10 days old when we first took him home and on the maximum of diuretics. I didn't leave the house for the best part of three months. I think I went out about three days without him," Joan said.
"We were told that a cold could kill him so we had no choice but to remain indoors. Donal was wrapped in plastic sheeting to avoid any infections. This is what our "everyday" was. Donal is our only child so this was all we ever knew. Our families were unbelievably supportive. We still had our days where we just cried. I can't count the number of times we visited Crumlin leading up to Donal's surgery. He adored the paediatric cardiologist Dr Fraser. We were told to keep doing whatever we were doing because it was keeping Donal alive. It actually defies all logic that he is doing as well as he is."
The family was forced to spend Christmas in hospital following Donal's surgery. At just 12 weeks, Donal underwent heart surgery.
"We were in the hospital church celebrating Christmas Eve mass," Joan said.
"Something told me to keep my phone on. It was a good thing I did because in the middle of mass we received a phone call to say that Donal was in intensive care following complications. They had to fit him with an emergency pacemaker as his heartbeat had become erratic. We were able to see Donal at 2am on Christmas Day. Knowing he would be alright was the best Christmas present we could have asked for. We had Christmas dinner in the Ronald McDonald House which was lovely. Dan and I slept in a place called the "warrior room" which was very fitting considering what Donal had been through."
The family battled on through the hardship and are happy Donal is thriving.
"Since the surgery, it's been onwards and upwards. Before Donal was born, Dan had bought a book of baby names. In it, he wrote down all the things we were going to do with Donal when he was born. I remember laughing at him for buying it at the time but it means so much to me now. I looked at it last week and we've already done a few things on the list including going swimming and taking a holiday."
She praised the Down Syndrome Centre for the support they have given her following their difficult ordeal.
"There's no negativity here. It's a very positive environment.
"There are so many services here available to children with Down syndrome. Speech therapy, occupational therapy and parent and baby classes are just some of the things they offer, but it's just as much for the parents as it is for the children. I could spend all the day sitting inside here drinking cups of coffee. We have a WhatsApp group with around 20 mums which is growing all the time. The Down Syndrome Centre is amazing for anyone with a new diagnosis. That's why I come all the way from West Cork to attend. We'd be lost without this place."
To make a donation to the Down Syndrome Centre visit www.downsyndromecentre.ie/dsc-centres/cork/. To get in touch visit email@example.com or call 021-4915616.