A conversation with Lola Anton and Chema Cabanillas, Marc’s parents
As director of AACIC Rosa Armengol explained in an interview earlier this year, when a baby is diagnosed with congenital heart disease, their families experience a process of adaptation. This process has three key moments: the diagnosis during pregnancy; the hospitalization, once the baby is born, and in the first years of the baby’s life, when they need to adjust their expectations to the infant’s clinical needs.
A complex and rare congenital heart defect
Marc has hypoplastic left heart syndrome. This illness is a rare congenital heart defect with no known cause that occurs during fetal development when the left side of the heart does not develop normally. The heart’s left side of babies with this condition is not strong enough to send blood to the body, so the right side takes over and maintains both pulmonary and body circulation. This overload of work can lead, over time, to heart failure. Today, doctors diagnose most cases of this heart disease during pregnancy. For babies like Marc, the best option is to keep the two parts of the heart connected by maintaining one of the two connections that the babies naturally have.
In April, we spoke with Marc’s parents Lola Anton and Chema Cabanillas. They shared with us how Marc’s life has been during the last year, the moment of diagnosis during pregnancy and the multiple surgeries and challenges they’ve faced.
Below is a piece of the interview. A few days after our conversation, the entire family gathered to celebrate Marc’s first birthday.
Question: How was the moment of Marc’s diagnosis?
Lola Anton: Well, we went for a visit to the emergency room, and there they told us that there was something in his heart, and they referred us to the Hospital Sant Joan de Déu. There, they explained that he had a hypoplastic left heart, what it entailed, what surgeries he would have to undergo and the quality of life we could expect. They explained everything to us very well and told us everything that could happen, both good and bad, and they asked us if we wanted to go ahead with the pregnancy or not. We decided to go ahead.
How were the first days after Marc’s birth?
LA: Very hard. First, because I was in the postpartum period and, after being pregnant for nine months and giving birth, I couldn’t be with my son. It comforted me a little that his father could be there. It is very hard seeing your son that you cannot meet him because you cannot see his face because he is full of cables, the first weeks are very hard, it is when you have to assimilate the reality of everything that you have been told.
How is your relationship with the doctors at the hospital?
L.A.: Our relationship with doctors has always been very good. We have a lot of support from both the paediatricians and cardiologists. They have always asked us, not only about Marc, but also about how we feel, what worries we have… They helped us a lot to feel comfortable.
Did you have any contact with other families at the ICU while Marc was there?
L.A.: With the families here, we understand each other because we are all going through the same thing. In addition, we live in a hospital house, together with other parents. They are like our family too.
And with patient associations?
L.A.: When we were diagnosed with this heart defect, I tried to look for information. I wanted to find a family that had been through the same thing as us so that we could know what we would face. I had a hard time finding it. But at the hospital, they work with an association called CorAvant, which offered us to talk to a psychologist during every visit. It went very well for us. Later, we met another one called the CorAll family, which has also been very good for us. There we met many people and other children with heart defects… when they first tell you, it seems that it is only happening to you, but no! It happens to more people. Learning about other experiences helped us a lot.
What would you say to a family with a diagnosis like Marc’s?
L.A.: Well, the first thing I would say is that what they decide will be okay, because each family and each person decides what is best for them and their child. Also, it really helped me to look for information, talk with other families, be aware of what I would find in the ICU, how I would see my son, and see photos. Later, when I found myself in that situation, I was not so surprised. And I would also tell them to go ahead! It is worth it.
ICFO