The Reason Behind it All

Lily Elsie Emily Thompson - Born on 22nd March 2024 at 9.05pm weighing just 750g at a scary 27 weeks old, 13 weeks premature.

After a resilient fight for 126 days in both Royal Victoria and Craigavon Area Hospitals NICU’s Lily overcame many obstacles such as infections and several blood transfusions. Defying all odds to do small things such as breath without the support of oxygen, control her temperature in an open cot and take a bottle, she really beat prematurity's butt!

As we prepared for home after a long 3 months in NICU we got the devasting news that we as a family would be embarking on another journey. Just days before what would have been Lily’s due date, Lily was diagnosed with an extremely rare heart condition - Pulmonary Vein Stenosis.

Pulmonary Vein Stenosis is a rare condition where the veins that carry blood from the lungs to the heart become narrowed or blocked with a stark survival rate of just 50% in the first year.

Lily sadly lost both her upper pulmonary veins and one of her lower veins has continually been attacked by the stenosis leaving her only one unaffected pulmonary vein.

Following a bleak diagnosis we’re eternally grateful for the teams at Royal Belfast Hospital for Sick Children, Clark Clinic Ward and Crumlin Children’s Hospital in Dublin. These teams have been transformational is delivering Lilys treatment plan through her long list of medications and several surgical interventions.

To date, Lily has had five cardiac catheterisations with intervention, undergoes weekly heart scans and takes a long list of medications. These medications make her very vulnerable due to their immunosuppressant properties, yet she continues to defy the odds!

Lily is currently the only child in Ireland to have Pulmonary Vein Stenosis and thus there are no patients we can simply copy treatment procedures from. Sadly, any diagnosed children in Ireland before Lily are no longer able to tell the tale. We rely heavily on research and treatment trials in America to assess appropriate plans for Lily.

Despite the odds being stacked against us she’s proven to all that meet her that she’s utterly amazing, happy and resilient not willing to give up without a fight!

Without the continued support of Lily’s consultants, medical teams at Clark Clinic, Belfast and the Children’s Heartbeat Trust we’d simply be lost.

Help us help The Children’s Heartbeat Trust continue to help children and young people with heart disease, and their families, live full and empowered lives; informed about their heart condition but not overwhelmed by it.

Love, Alan & Laura