Pulmonary Atresia: Ivy’s Story

Ivy’s heart defect, pulmonary atresia, wasn’t detected until she was critically ill. Her mum, Bernice, shares their story:

Our little girl, Ivy, was born in June 2021. She was just perfect. However, we knew early on that something wasn’t right, but were told many times she was absolutely fine.

When Ivy was just four days old, she became very sleepy and wouldn’t feed. Knowing something was very wrong, I called 999. When the ambulance turned up, her oxygen levels were around 40.

She was blue-lighted to our local hospital. Ivy had a cardiac arrest in the ambulance and the paramedics managed to get her back. But as soon as we got through the hospital doors, she was gone again.

In total, Ivy was gone for 45 minutes – the hospital did an amazing job and saved her life. It was then we found out Ivy had a very rare heart condition: pulmonary atresia with an intact ventricular septum.

Ivy was transferred to PICU. She had organ failure and there were concerns her brain could be damaged. Thankfully, CT scans showed her brain was fine.

Ivy was nearly one month old when when her heart surgery took place. She had a catheter procedure to balloon the value. Unfortunately, this was unsuccessful, so they had to stop it.

A couple of days later, Ivy become really unwell and went onto ECMO (life-support). This was a chance to give her body a rest. That same week, doctors decided to attempt heart surgery again. This time it was successful and, the next day, Ivy came off ECMO.

Ivy still had a huge mountain to climb. Eventually, after 89 days in PICU, she was discharged. She spent a few weeks on the ward and then we were transferred back to our local hospital. After almost four months in hospital, our little girl came home.

We are forever grateful to the hospital; they saved our little girl’s life.

If Ivy’s condition had been found during a pregnancy scan, or soon after birth, her journey would have been more straight-forward. We’re so thankful for charities like Tiny Tickers, who raise awareness of congenital heart disease (CHD) and help ensure heart defects are detected sooner.

Find out more about pulmonary atresia here.