Iris was diagnosed with tetralogy of Fallot (TOF) at Becky’s 20-week scan. When Iris was born, she didn’t show any signs of having a serious heart condition and her family is incredibly grateful it was picked up antenatally. This is their story, told by Becky:

At my 20-week scan, the sonographer picked up a potential problem with Iris’ heart. She couldn’t get a good view of the three-vessel view (3VV). She said everything might be fine, and used an acorn keyring to demonstrate the size of baby’s heart, but after two previous losses, and her being an IVF baby, we were used to bad news, so expected the worst.

After a follow-up scan and referral to a specialist heart clinic, Iris was diagnosed with the heart condition tetralogy of Fallot (TOF).

The diagnosis was devastating, but access to the Tiny Tickers Facebook group helped, as did seeing stories of other parents that had been through the same thing.

Iris was small for her gestational age (which, I believe is common with heart babies), so doctors agreed to deliver her at 37 weeks. When she was born, Iris spent some time in NICU and on the cardiac ward, but all of her observations were perfect. The doctors said that If her heart defect hadn’t been picked up antenatally, they wouldn’t have detected it.

At around six-weeks old, Iris began routine oxygen saturation monitoring with community nurses. At the first visit, her oxygen levels were very low, and this resulted in us being blue-lighted to hospital and Iris starting medication. We were completely shocked, as we were told she was unlikely to have problems before surgery, and to look out for her turning blue, but there was no colour change.

This happened again the following week, and over the course of the next ten days it was established that her de-sats happened at night, and she wasn’t a “text book case.” Her colour didn’t change until her oxygen dropped very low, and so her episodes were only picked up because of continuous monitoring.

After a worrying couple of weeks, the decision was made for her to have open heart surgery for her full repair at 10 weeks. This surgery is not normally carried out until around six months, and a weight of at least 5kg. Iris was 4kg.

Six days after surgery, we were discharged from hospital, and have just had our first Christmas at home together, without the surgery hanging over us.

If it wasn’t for the work Tiny Tickers does to train sonographers, we don’t know what it would have taken for her condition to have been picked up and how low her oxygen levels could have gone. That is very scary to think about.

Having had her surgery, the specialists are confident that Iris will lead a full life, with no restrictions on what she’s able to do.

Iris’ “roomie” in hospital, was a baby of a similar age with a VSD (hole in the heart). After we were discharged from hospital, her mum found us on Facebook, through the Tiny Tickers group, and we have kept in touch.