Hypoplastic Aortic Arch: Kai’s Story

Kai was born in 2014. His heart defects were detected when he was five weeks old. His proud mum, Chanel, shares their story:

My son, Kai, was born in 2014 by emergency C-Section, due to low heart rate in labour. He was discharged when he was two days old. Nothing was detected during pregnancy or prior to discharge.

When we got home, Kai had slow weight gain and vomited a lot. I told the health visitor and midwife about this, but they reassured me the vomiting was normal. However, when he was five weeks and five days old, I grew increasingly concerned as he hadn’t kept a single feed down for 12 hours. I took him to the GP who referred us to our local hospital’s Paediatric Assessment Unit.

In the hospital, Kai’s saturations were in the 70s. A few hours later, he was intubated and transferred to PICU. They diagnosed him with a hypoplastic aortic arch, coarctation, a very large muscular VSD, poor left ventricle function and an ASD.

I had never heard of heart defects before and was terrified. I genuinely thought he was going to die. I felt so alone and had no idea what was happening or what people were saying to me. It all became such a blur.

Kai had his first open heart surgery (OHS) at six weeks-old. He arrested in theatre, followed by a second arrest a few days later. His second OHS was at 10 weeks-old because they were unable to extubate him and he needed a PA (pulmonary artery) band. He had a third OHS at 13 months-old, to remove the PA band, reconstruct his pulmonary artery and have his tricuspid valve repaired (due to a severe leak).

Between his second and third OHS, we spent a lot of time in our local hospital too, where I soon became his biggest advocate. I always knew in my gut what was wrong each time he became unwell, especially running up to his third surgery when his heart function deteriorated.

Kai is now eight years old and on yearly checks. He still has a small VSD – they couldn’t fully close it due to the positioning and a leak of his tricuspid valve. However, he is doing amazingly! He goes swimming, plays football and does martial arts (he’s a purple belt!).

Since everything happened, I have trained to become a paediatric nurse and I work on my local children’s ward, where Kai was initially treated. We spent lots of time there in his first year of life.

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