Ebstein’s Anomaly: Esme’s Story

Esme’s heart condition, Ebstein’s Anomaly, wasn’t detected during Stacey’s pregnancy. Esme appeared to be perfectly healthy after birth, but a routine pulse oximetry test showed that her blood oxygen level was low. This resulted in her referral and speedy diagnosis:

I had a straightforward pregnancy, with all scans coming back fine. We arrived at the birth centre at 7.15am on the 7th May 2020 and, 15 minutes later, Esme was born.

Seven hours later, the midwives were undertaking their final checks and we were getting ready to take Esme home. Thankfully, the maternity unit uses pulse oximetry machines as part of these final checks. As they conducted the test her levels were flagged as being too low. Initially the midwife said that fast labours can sometimes cause this, and it could be a case that Esme was too cold, so we spent some time warming her to improve her levels. However, the test was still showing her oxygen levels as low and declining slowly.

After consultation with the nearest neonatal unit, the midwives administered oxygen and we got sent to another hospital in an ambulance for further checks. It was then that the doctors had suspicions she may have something wrong with her heart.

They sent scans up to the Freemans Hospital in Newcastle and we got blue lighted up there for further assessment. When we arrived, the consultant conducted several scans and diagnosed Esme with the rare heart condition, Ebstein’s Anomaly, only 16 hours after being born and nine hours after the first pulse oximetry test.

This simple and quick test detected the first sign of my daughters heart condition -we dread to think what would have happened if the test hadn’t been conducted and we had been sent home with her condition undetected. We are beyond grateful to the midwives for conducting this test with Esme before discharging us.

Esme spent two weeks on a High Dependency Unit in hospital following her birth, showing just how vital the early detection of her condition was. She is now 18 months old and has regular cardiac follow up appointments. She is currently waiting for her first open heart surgery, a valve replacement, which is being planned within the next six months.

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.

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.