My Baby’s Heart Defects: Lacie’s Story

Lacie’s heart defects were diagnosed during her mum, Kayleigh’s, pregnancy. Here Kayleigh tells their story:

At our 20 week scan, we found out that something wasn’t right. We went back a week later to recheck Lacie’s heart, as they thought it might have been her position.

At 21 weeks, I attended for the other scan, only to find out Lacie had an issue with her heart, but they didn’t know what the issue was. We were referred to a Fetal Medicine Unit.

We went to the appointment and found out Lacie had coarctation of the aorta, hypoplastic aortic arch, muscle around the aortic valve and a large VSD (hole in the heart).

Being T1 diabetic myself, we always knew Lacie would be born early. We just didn’t imagine she would be born at 32 weeks!!

Surprisingly enough, when Lacie was born, she was actually doing better than me – despite being early and having a congenital heart defect! Due to me being so ill, Lacie was born at my local hospital and not a bigger hospital, as planned. She was immediately started on medicine to keep the duct between her heart and lungs open before being transferred later that day. It was two days later before I even got to meet Lacie! If her condition hadn’t been picked up in pregnancy, I really don’t think she would be with us now.

At two weeks old, Lacie was taken for emergency heart surgery to repair her coarctation. We were advised that she was one of the smallest babies to undergo heart surgery, at only 1.92kg. Everyone, including the doctors and nurses, was surprised at how quickly she recovered!

At four weeks old, Lacie underwent further emergency surgery to fit a pulmonary artery band. Finally, the day before her due date, we got her home on the 13th January 2022.

Lacie has to undergo more heart surgery over the coming months to remove the band and repair her large VSD, but in the meantime she is meeting all her milestones and is doing extremely well. She still has a long way to go, but she is the bravest and strongest person I know!

Find out more about different types of congenital heart defects here.