'We just don’t know what’s to come': Fundraiser for Cork baby with several heart conditions

Over €1,400 has been raised for the medical costs of a baby girl struggling with several heart conditions.

Cork couple Kellie and Aaron Kenneally’s daughter Hayleigh-Rae was born on the 29th of November 2023, six weeks early and weighing just 1.6kg.

Due to her early birth, doctors performed several tests, and an echo revealed a heart murmur.

Further investigation found that she was born with Congenital Heart Disease (CHD), and had a large Ventricular Septal Defect (VSD), Pulmonary Stenosis, and Double Outlet Right Ventricle (DORV).

They explained on the GoFundMe page: “For those who don't know about these conditions: A VSD is a birth defect of the heart in which there is a hole in the wall (septum) that separates the two lower chambers (ventricles) of the heart.

“Pulmonary Stenosis is a condition caused by blockage to blood flow from the right ventricle to the pulmonary artery. This blockage is caused by narrowing from the right ventricle to the pulmonary artery.

“DORV is a rare congenital heart defect. In DORV, the pulmonary artery and the aorta (the heart's two major arteries) both connect to the right ventricle.” 

Due to these conditions, Hayleigh is being fed by NG tube, as feeding with a bottle causes fluid to enter her lungs, causing her to struggle with her breathing as well as causing difficulty with her heart rate, due to the effort she tries to put in when trying to drink from a bottle and the fluid build-up in her lungs and around her heart.

Kellie and Aaron explained: “Hayleigh has had very long stays in hospital and unfortunately she will be spending more time in hospital than she will at home.

“She is on a lot of medication which is essential to help her heart, which is extremely expensive, and she will have multiple stays in hospitals and appointments multiple times a week in CUH and Crumlin children’s hospital.” 

She is due to have her first open heart surgery in a few weeks’ time in Crumlin Children’s Hospital, which her father describes as a very complex operation, adding that she will need more of these surgeries throughout her life as she grows.

“We don’t know what the future holds for us and our daughter Hayleigh, her conditions are life threatening. Life is short enough, but Hayleigh’s may be cut shorter,” they wrote.

They were recommended to make this fundraiser due to high costs of travel to her appointments, lodging during her stay after surgery, and medications, but said, “we don't want anyone to feel like they HAVE to give a donation- sharing this page would be helpful to us and it would help spread awareness about CHD.” 

Kellie told The Echo: “So many people have donated on the page - I don’t know half of them, but they have shared such lovely messages.” 

 She added that though friends suggested she put the target higher, “we’re not the type of people to ask for help, but if we can keep the fundraiser going, to get to the target and more that would be amazing.

“Even a share will help as well, we just don’t know what’s to come and we’re really at a loss right now with everything,” she said.

You can donate to the fundraiser here.