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‘Tough little cookie’ baby Nina waits on heart transplant

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Baby Nina Heffernan with her parents Laura and Johnny

Baby Nina Heffernan with her parents Laura and Johnny

Baby Nina Heffernan with her parents Laura and Johnny

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The 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 on to the heart transplant list in the UK.

Nina, who is just 13 months old, has been in and out of hospital for most of her young life, and was 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 a congenital heart block. I developed an auto immune disease when I was pregnant, that I didn’t know I had, which caused this problem with her heart.  When she was born she was in hospital for five or five weeks ,and they fitted her with the pacemaker. We got her home for a little while and thought she might be ok, but she started to continuously be sick, vomiting all the time, and not gaining weight.”

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As the mum of two boys already, Laura said it was clear that “something was just not right.”

"She got a feeding tube ]fitted through her nose at around three months, but the vomiting increased. it was just all the time, so much so that we couldn’t leave the house.”

Nina was born during the Covid restrictions of Spring 2021, which made things even more difficult for her worried parents.

“It was a one parent policy for staying with her in hospital, it was so difficult. My husband Johnny would stay at home with the boys overnight, and I would stay with Nina. he would come up during the day to let me get some sleep in the parents accommodation.”

Doctors at Crumlin Children's Hospital have continued with efforts to help Nina, including fitting 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 were hopeful again.”

“But, unfortunately she then caught Covid, and was very sick for a few weeks with it.” The vomiting continued, and Nina’s condition was deteriorating.

A procedure to effectively tie a knot in her stomach to prevent the sickness was carried out, but Laura said she “hasn’t been doing well at all over these last few weeks. It’s been hard seeing her like this. But she is 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 really rough night for her. But they discovered she had an infection, and have sedated her since then to try and help her body fight it.”

She is currently on a ventilator, and although her parents have adjusted to her being “semi-conscious” Laura adds it has been “a very tough time.”

"We were so glad to be able to give her some cuddles last week, for the first time in five weeks.”

Nina has been diagnosed with heart failure and has cardiomyopathy, and the best chance for her now, says Laura, is a heart transplant..

“They have done genetic testing on her as well to try to find out why her heart has given out so quickly, and found she does have some type of deletion in her genes.”

“There is no way of knowing exactly how she would respond to a transplant, but if all goes well she might not even need the pacemaker any more.”

Laura and Johnny are now fighting to have Nina transferred to the Cardiothoracic Unit at the Freeman Hospital in Newcastle, England, where she can be carefully monitored until a heart becomes available.

"We are meeting with the team, and hoping they will agree to have her transferred there,” said Laura.

"Otherwise she would stay in hospital here, and there would be limited time to get her transferred if a heart did become available.”

It has been an incredibly difficult year and more for the Heffernan family, who may have to relocate to the UK if Nina is accepted by the team in Newcastle.

"We have just been on auto pilot really. People are saying to us they don’t know how we are doing it, bit 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 are covering the cost of Nina’s care, funds raise will go to pay for unknown costs of care 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 have had to move from their home in Dundalk to Dublin to remain near Nina, resulting in their inability to work full-time, The family may also have to move to the UK if Nina is moved to hospital there.

To support baby Nina and her family, go  on to   
https://www.gofundme.com/f/ninas-need-for-a-heart?qid=366cece338fb12002d89ca9cdf2b4444


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