Pulmonary Atresia: Leo’s Story

Soon after he was born, Leo had a pulse oximetry test, which showed his blood oxygen level was very low. The quick, painless and simple test started the chain of events that went on to save his life. His mum Emma tells his story:

I was having a pretty straight forward pregnancy, the 12-week scan seemed perfectly fine and the 20-week scan also seemed all okay, with zero concerns.

I was diagnosed later on in the third trimester as having polyhydramnios, which is too much amniotic fluid, as I kept having pains and reduced movements. I had consultant scans between three and four weeks with everything seeming okay. Due to the amount of discomfort I was in, I was induced at 37 weeks.

I gave birth naturally to Leo on the 21st March 2020. He was gorgeous. The birth was pretty straight forward, though he had very blue hands and feet. We were reassured this was okay.

Around five hours after Leo was born, the midwife needed to check his SATS with a pulse oximetry machine before we were allowed to go home. These were registering at 78%. The midwife went away to get another monitor, as she thought it may be faulty, and came back with a few doctors. They gave Leo oxygen to try and support him, but knew something wasn’t right.

He was taken straight to the neonatal ward and we were told they needed to check his heart and lungs. Hours later, which felt like a lifetime, a cardiologist came to talk to us and explained that Leo had a complex heart condition called pulmonary atresia and a VSD (hole in the heart) and he needed surgery imminently for him to survive.

Arriving in PICU at Leicester, Leo was ventilated and kept on prostin to keep his duct open. A CT scan was arranged for the following day. After the CT scan, surgery through a cardiac catheter was arranged to stent his duct. Sadly, this wasn’t successful and the duct started to close. He needed open heart surgery.

At three days old, Leo needed to have a sano shunt to get the blood to flow from the heart to his lungs. Sadly things began to get worse. The sano shunt blocked and the blood wasn’t able to flow, so Leo needed to be put on ECMO (life support) to give his body time to rest and recover. We were told he was very poorly but they would try everything they could to help him.

Leo went back for a cardiac catheter a few days later to see if they could stent the sano shunt. This was successful and he was able to come off ECMO at ten days old. He still had a long recovery ahead, but this was a huge step forward. At two weeks old Leo was extubated and was able to breath by himself with the support of CPAP (continuous positive airway pressure).

Leo was struggling to feed and had severe reflux, so needed to be fed via an NG tube. The dieticians realised he also had a cow’s milk protein allergy. After some different trials of special milk he started to get stronger.

He was doing really well, but developed an infection in his chest. After numerous medications, he was finally well enough to come home. We were able to begin family life at home with Leo at four weeks old and he was on home monitoring until he was 11 months old.

Leo has difficulties with feeding still and is under various medical professionals to help support this. In February this year, he needed to go back to hospital, as his oxygen saturation began to lower. He had another cardiac catheter procedure and major aortopulmonary collateral arteries (MAPCAs) were discovered. Doctors decided Leo needed to have his next open heart surgery a few days later, as the sano shunt wasn’t big enough anymore (his oxygen saturations were 63%).

The fear began setting in. We were in a hospital far from home, not able to have any support due to COVID restrictions. Leo had open heart surgery again on the 25th February 2021, as he needed a bigger conduit and repairing of the VSD. A few compilations arose and they weren’t able to repair the VSD, due to weakness within the heart. They are hoping to close this at a later date.

Leo is doing okay, there are a few other complications which are being monitored, and he struggles being very out of breath, is often tired, has severe reflux and struggles feeding. However, he is doing exceptionally well considering what he’s been through.

Not knowing in pregnancy that Leo was going to be born with CHD has been very difficult, not being able to prepare yourself for what’s next is very hard, but he is doing amazingly.

The scariest thing is, if the pulse oximetry test wasn’t done at birth, we would have gone home and he would have died.

Pulse oximetry is not part of mandatory NHS newborn checks. Tiny Tickers believes every baby should have the test that could help save their life and to help achieve this, we place pulse oximetry machines in maternity wards across the UK.

The hospital where Leo was born and had his pulse oximetry test received pulse oximetry machines from us as part of our Test for Tommy pulse oximetry campaign.

To find out more about where we have placed machines and how you can help, read about our Test for Tommy pulse oximetry campaign here.