Séan - A Little Fighter
“I had my 20 week anomaly scan and the sonographer knew there was something up. Later on Professor Colin McMahon confirmed Seán had Tetralogy of Fallot absent pulmonary valve syndrome a rare congenital heart defect. Less than three children are born a year in Ireland with an absent pulmonary valve and the outcome is very uncertain. I think we were just numb. It was too much to take in. It was our first pregnancy too and we just didn’t know what to expect. The cardiac nurses from Crumlin hospital met with us before Seán was born and took us through everything that would happen, what we needed to bring with us and what we could expect.
Seán was born on the 5th April and transferred to Crumlin Hospital, but after four days they let us bring him home. We knew we would have to bring him back to be operated on, but he was doing so well he was allowed to go home. We were absolutely delighted, and terrified at the same time. We had this tiny new-born baby with a heart defect and next thing we knew we were driving home with him.
He had his heart surgery when he was five months old. He left us at 10am and the operation was over at about 6pm. It was the longest day of our lives. After two weeks in the hospital he came home again and we had appointments at the hospital every two months, which then changed to every four months. Seán is going to need more heart surgeries as he continues to grow. He’s closely monitored by Crumlin, thankfully. He was just recently diagnosed with epilepsy as well which makes it harder.
Seán is a little rascal. Everyday we’re so grateful that he’s here. He’s the happiest, most playful and affectionate little boy. Our families are all just mad about him. He’s our little miracle. All of the research into cardiac conditions has already made a big impact for our baby. They were able to use tissue from Seán’s pulmonary arteries to make a valve instead of inserting an artificial one. He had open heart surgery but with research and time hopefully the surgery will be less invasive.”
- Jennifer Ruby, Séan's mum.