Baby Hayleigh-Rae's Fight Against CHD

Our daughter, Hayleigh-Rae, was born on the 29th of November 2023. She was born 6 weeks early, at 1.6kg.

The doctors explained that, as she was a premature baby, it would be her weight that was the main issue, but this quickly changed. As she was early, the doctors wanted to do some tests. One of these tests was an echo on her heart. They found that she had a heart murmur.

After the results of the echo, they wanted to do further investigations on her heart. They found that she was born with Congenital Heart Disease (CHD). Hayleigh was born with a large Ventricular Septal Defect (VSD), Pulmonary Stenosis, and Double Outlet Right Ventricle (DORV).

Recently, Hayleigh was also diagnosed with Hypoplastic Aortic Arch and Intermittent Hypertension. It has also been mentioned that she may have a hormonal brain tumour, but we don't have those answers just yet.

We are constantly travelling to Crumlin Childrens Hospital every week for appointments and admissions. The plan is for Hayleigh to go to Great Ormond Street Hospital.

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 (Nasogastric tube) as feeding with a bottle causes her to aspirate (fluid entering her lungs), struggle with her breathing and struggle with her heart rate. This is due to the effort she tries to put in when trying to drink from a bottle and also due to the fluid build up in her lungs and around her heart.

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. She will have multiple stays in hospitals and appointments multiple times a week in CUH and Crumlin childrens hospital.

Hayleigh is awaiting her first open heart surgery. This will be a very complex operation. She will need more of these surgeries throughout her life as she grows. We dont know what the future holds for us and our daughter hayleigh. Her conditions are life threatening. Life is short enough, but Hayleighs may be cut shorter.

We were recommended to make this fundraiser by many people due to high costs of travel to her appointments, lodging during her stay after surgery, and the high cost of medications. 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.

THANK YOU.