Tetralogy of Fallot – Edie’s Story

‘I remember driving to our 20 week scan without a care in the world. We were super excited to see our little baby again. But, towards the end of the scan the words, ‘I can’t see everything clearly in your baby’s heart’ hit me like a tonne of bricks. It took a further three fetal medicine scans plus one cardiology scan before our baby was diagnosed with Tetralogy of Fallot (TOF).

Doctors told us that, although our baby had the condition, everything looked uncomplicated on the scan. We could have a ‘normal’ birth at our chosen hospital, Walsgrave in Coventry. But, they said she may be blue and unresponsive at birth and for this reason we would have a bed in NICU on standby.

Luckily, we didn’t need the bed in NICU. Edie arrived kicking and screaming (literally!) at 10.04pm on 4th July 2018. She was so beautiful and strong! She spent eight hours in special care, so they could measure her saturation levels. Six hours later, we were home.

Edie’s care was then transferred to Birmingham Children’s Hospital, where we saw her consultant for monitoring every six weeks. We were really lucky that Edie didn’t suffer any outward symptoms of her condition. If you didn’t know about her heart, you wouldn’t think anything was wrong.

When Edie was eight months old, Birmingham called us to say they had a surgery cancellation slot and it was available for Edie to have her repair. We said yes, eager to get her heart fixed and carry on with life.

Her operation lasted six and a half hours and she was put on bypass twice. These were by far the longest hours of my life, but as soon as I saw her on PICU I knew she was a fighter! After 24 hours on PICU, she moved to the Heart Baby Ward. Six days later we were home with a healthy baby who had a repaired heart.

We know Edie will always be under consultant care. One day, we will have to explain to her why she has a scar on her chest and some other children don’t. We will be forever grateful to the sonographer who spotted something wasn’t quite right. Thanks to her, we had time to prepare for the “what ifs”. For that, we can’t thank her enough.’

 

Find out more about Tetralogy of Fallot here.