Tetralogy of Fallot (ToF): Matty’s Story

Courtney’s fourth baby, Matty, was diagnosed with tetralogy of Fallot (ToF) at the 20 week scan. Here she shares their journey:

(The photos in this story were taken by and belong to the author, depicting their family’s personal journey.)

At our 20 week anatomy scan we were told the worrying news there was something wrong with our baby’s heart.

A week later, our baby was diagnosed with tetralogy of Fallot (ToF). Matty was our fourth baby, but this was all new to us. It was a lot to process.

We were very lucky it was picked up when it was, as we had a lot of time to research and prepare as best we could.

I had a relatively normal delivery. Our beautiful baby boy was taken to the NICU after birth and 24 hours later was released from the NICU. He was doing incredibly well.

At home it was the same. You wouldn’t have thought he had congenital heart disease (CHD). He was gaining weight perfectly and I was exclusively breastfeeding.

Matty was hitting his milestones. We had scans and appointments to keep an eye on his heart and saturations. We started noticing a bit of a deterioration at eight months old. Matty would tire easily, he looked quite grey sometimes and his oxygen levels wouldn’t stay above 80% (usually they were always in the high 90s).

At this time we were also told Glasgow Hospital was stopping surgeries due to reasons beyond their control. It was a waiting game to see when they would continue.

In December 2025, at ten months old, Matty had his first TET spell (cyanosis caused by a rapid drop in oxygen). He had another in January. He was admitted to the cardiac ward and they prescribed propranolol. It made a big difference.

The cardiologist had been in talks with Leicester Royal Infirmary about Matty and they agreed to take on Matty’s case. Around a month later, we had a date for Matty to have surgery there.

We had so much support from both Glasgow and Leicester while we were so far away from home. On the 2nd March, at 8am, we took Matty to the cath lab ready for surgery. It was incredibly hard.

After five hours we received the amazing news the surgery was a success. Two hours later we got to see him. It was upsetting at first. There were arterial lines, multiple cannulas and drains, plus wires to monitor him. I don’t think you can really prepare for that, though you’re just happy to see them after surgery.

The first few days were hard. Matty had junctional ectopic tachycardia (JET). He was on a pacemaker and different medications to help. His heart rhythm took a few days to come back but thankfully it did. He had fat coming out of this drains, so two of them had to remain longer.

Matty also had chylothorax, which is where fluid leaks into the space around the lungs. He was put on a special diet which included a special milk and was very low fat.

Twelve days after his surgery, once Matty was stable, he was ready to be transferred to Glasgow. He was flown to Glasgow Hospital by the Skycare repatriation team, who were absolutely incredible. So much went into the transfer and they were brilliant with him.

The care Matty received at Leicester was amazing. I’m so grateful they performed his surgery. We loved everyone who took care of Matty.

Once in Glasgow, they monitored how he was. They removed the drains 12 days post op. Matty was able to move around a lot more and get more cuddles.

He had some fluid around the heart, which can be normal, and after a few days the leaking wasn’t as bad as it had been. He was discharged 16 days after his surgery. I was trained to feed him via NG tube while he remained on the diet.

Although it seemed like a long recovery, we are so happy his surgery went well. I hadn’t seen a lot of stories of babies Matty’s age having surgery. I researched a lot and it was so helpful to read the stories I found.

Not every story is the same, but I hope Matty’s is helpful to some. I had never heard of JET or chylothorax before it happened to Matty. These things can happen after heart surgeries, so I hope this can be helpful to other parents going through the same.

We are so lucky to have the amazing surgeons, cardiologists, doctors and nurses who care for these babies on a daily basis.

We’re also lucky to have the sonographers who pick up these conditions early and are able to diagnose so quickly. I couldn’t imagine finding out months down the line when my baby turned blue and I can’t thank them all enough. They save lives.

We couldn’t be any prouder of our boy. He manages so well with his special heart. He was so strong in recovery and we can’t wait to see where his fixed heart takes him in life.