Dundalk parents of baby Nina Heffernan have spoken of their ‘tough little cookie’ who faces a daily battle to survive as she waits to be accepted onto the UK heart transplant list.
Ina, who is just 13 months old, was hospitalized for most of her young life and fitted with a pacemaker when she was just a few days old.
Mum Laura told The Argus how Nina’s heart condition was first discovered in the womb.
“Nina was born with congenital heart block. I developed an autoimmune disease when I was pregnant, which I didn’t know I had, which caused this problem with her heart. When she was born, she was hospitalized for five or five weeks and they put her on a pacemaker. We took her home for a little while and thought maybe she was fine, but she started getting sick all the time, throwing up all the time and not gaining weight.
As the mother of two boys already, Laura said it was clear “something just wasn’t right”.
“She had a feeding tube put through her nose at around three months, but the vomiting increased. It was all the time, so much so that we couldn’t leave the house.”
Nina was born during the Spring 2021 Covid restrictions, which made things even more difficult for her worried parents.
“It was a single parent policy to stay with her in the hospital, it was so difficult. My husband Johnny would stay home with the boys overnight and I would stay with Nina. He would come during the day to let me sleep a bit in the parents’ accommodation.”
Doctors at Crumlin Children’s Hospital continued their efforts to help Nina, including installing a ‘peg’ in her stomach to replace the feeding tube.
“She was brilliant after that for about three weeks. She had no vomiting and we had hope again.”
“But, unfortunately, she then caught Covid and was very sick for a few weeks with it.” The vomiting continued and Nina’s condition deteriorated.
A procedure to effectively tie a knot in her stomach to prevent illness was carried out, but Laura said she “hasn’t been well at all for the past few weeks. It was hard to see her like that. But she’s a tough little cookie.
Just last week, Nina and her husband Johnny were called to Nina’s bedside as doctors feared her heart was giving out.
“It was a very difficult night for her. But they found out she had an infection and have been sedating her ever since to try and help her body fight it off.”
She is currently on a ventilator, and although her parents have adjusted to her “semi-consciousness”, Laura adds that it has been “a very difficult time”.
“We were so happy to be able to hug him last week, for the first time in five weeks.”
Nina was diagnosed with heart failure and has cardiomyopathy, and the best chance for her now, Laura says, is a heart transplant.
“They also did genetic testing on her to try to find out why her heart gave out so quickly, and found she had some sort of deletion in her genes.”
“There’s no way of knowing exactly how she would react to a transplant, but if all goes well, she may not even need the pacemaker anymore.”
Laura and Johnny are now fighting to get Nina transferred to the cardiothoracic unit at the Freeman Hospital in Newcastle, England, where she can be closely monitored until a heart is available.
“We meet with the team and hope they agree to transfer her there,” Laura said.
“Otherwise she would stay in the hospital here, and there would be little time to get her transferred if a heart became available.”
It’s been an incredibly difficult year and more so for the Heffernan family, who may have to move to the UK if Nina is accepted by the Newcastle squad.
“We’ve just been on autopilot. People tell us they don’t know how we do it, but we have no choice. We have to do this for Nina, to give her every chance.”
A fundraiser has been launched to help the Dundalk family. Although the HSE covers the cost of Nina’s care, the fundraising will be used to pay for unknown care costs now and in the future and to support her mother Laura, father Johnny and their two young boys, aged just 5 and 7 years old.
Nina’s parents had to move from their home in Dundalk to Dublin to stay near Nina, which left them unable to work full time. The family may also have to move to the UK if Nina is transferred to hospital there.
To support baby Nina and her family, l og on