Pulse Oximetry and Transposition of the Great Arteries – Tom’s story

Nicky’s little boy Tom was born with Transposition of the Great Arteries which was thankfully detected using pulse oximetry before he was discharged from hospital. This is their story.

I got pregnant with Tom in early 2015 and my pregnancy seemed to go smoothly. Being a veterinary surgeon, I was perhaps a little more aware than some mums-to-be about the different issues that can arise, so was very relieved that the 20 week anomaly scan didn’t raise any concerns.

My son, Tom Myles Haggarty, arrived on the 24th November 2015 and he seemed like a perfectly healthy little boy. His newborn checks had flagged up a heart murmur but the paediatrician was confident that it would close over (as it normally does) and so we relaxed.

We were getting ready to be discharged on Day 2 when the paediatrician came to check Tom again. This time he took Tom into a separate room and used a Pulse Oximetry machine to check the oxygen levels in his blood. I waited for them to return but, as the minutes passed, began to panic. Where was my son?

The doctor tested Tom’s blood using pulse oximetry and had detected only 80% oxygen saturation levels – dangerously low. He had immediately taken him to neonatal intensive care to be monitored and this is where I next saw my baby. Lying on a table with up to six doctors crowded around him. The realisation that there was something very wrong with him hit me hard.

After two hours of waiting and worrying, they gave us a diagnosis. Tom had Transposition of the Great Arteries (TGA), Ventricular Septal Defect (VSD) and an Atrial Septal Defect (ASD).

At just 8 days old, Tom had open heart surgery. Despite being told that the surgery would last 6 hours, it was closer to 12 hours of uncertainty and fear. When we finally saw him, his chest was still open – a sight that a new parent cannot prepare for – but he was alive and his heart was working, and that was what we focused on.

Despite a rocky recovery, which included Tom having a cardiac arrest at 11 days old, he has since gone from strength to strength.  We were discharged when he was 3 weeks old, just in time for Christmas and, in lots of ways, we haven’t looked back since.

He is now a bright, very tall and perfect toddler who loves nursery rhymes and is decidedly unimpressed with the recent arrival of his little sister, Cora!

My husband Jonathan and I truly believe that the use of the pulse oximeter saved Tom’s life. TGA is a condition where the two main blood vessels (the ‘great arteries’) leaving the heart are swapped over. It needs to be treated as quickly as possible and babies usually start deteriorating hours after delivery and can then die suddenly. We cannot bear to think what may have happened if we had been allowed to go home.

Without the pulse oximetry test, which is currently not a compulsory part of newborn testing, we would have been sent home. It terrifies me how differently our story may have turned out. Pulse Oximetry is a cheap and quick screening procedure for cardiac (and respiratory) abnormalities – and it causes very little distress to babies.

5,000 babies are born in the UK every year with a heart condition, but over 1,000 of them are sent home with an undetected heart condition. Tiny Tickers is working hard to find each of these babies by providing Pulse Oximetry machines, worth just £750, to maternity units across the UK.

Our little boy’s heart has now been repaired and his outlook for a normal life is great. Heart conditions can be overcome, but finding those little hearts is crucial.