Lucia and Alba

Alba and Lucia are 5-year-old twins who live with their parents Gema and Sergio – and their little dog Mika – in Madrid. Lucia has pulmonary atresia, a rather rare congenital heart defect. We interviewed her and her family.

Lucia and Alba, tell us a little about yourselves.
Lucia: We like a lot of the same things – swimming and basketball and Batman and Spiderman. And Mika, our dog.
Alba: Yes, we’re alike. Only Lucia has glasses, and I don’t, and her heart is special.

Sergio and Gema, when did you learn about your daughter’s congenital heart defect?
Sergio: When my wife was four and a half months pregnant, we had an prenatal screening done and the doctor told us that there might be a problem with one of the girls’ hearts. A second examination at a special clinic confirmed that suspicion. It was a real shock for us, because we didn’t know whether Lucia would make it to the birth. Our doctor was excellent and very supportive. We went for monthly ultrasound examinations and the twins were born in the 40th week. Lucia was diagnosed with pulmonary atresia, but she was alive and doing well, considering the circumstances.

How did you adjust to life with a heart child?
Sergio: It was hard at first. Not only did we have to take care of twins, but one of them was at the hospital for the first 31/2 months, while the other one was at home. Still, they are very close to one another. So far, Lucia has had three surgeries: the first 15 days after she was born, the second when she was 10 months old, and the third only last July. Everything went well and she’s now doing great.

Lucia, do you like going to the hospital?
Lucia: It’s a little scary sometimes, but the doctors and nurses are really nice. They explain everything to me, and when I go for my examination, I also get a snack. Maybe I’ll become a doctor, too, when I grow up.
Alba: Me, too – or a veterinarian. Next time Lucia goes to the hospital for her examination, I’ll go with her.

Gema and Sergio, were you able to get help during those difficult times?
Gema: Yes, we got a lot of support from friends and family. Our friends Pablo and Eli have been particularly wonderful every step of the way. Everybody should have friends like that - they always understand what we’re going through and managed to make us smile even during the worst times. We can’t thank them enough. We’re also extremely grateful to the whole staff at the Hospital Doce de Octubre in Madrid and to the Fundación Menudos Corazones, the Spanish organization for parents of heart children. They helped us tremendously and stayed by our side the whole time.

What are your hopes for the future?
Sergio: That we keep on being happy. Lucia needs to have at least one more surgery, and we hope it will go as well as the others. Our hope and our dream is that we will continue to see them as happy as they are now.
Gema: And we hope that when Lucia grows up, her heart condition won’t be a problem for her.