Giulia: “When your daughter’s heart doesn’t beat well”

“When I got pregnant, I was 31. A crazy joy, my heart pounding, only to discover that that little heart that was beating inside me instead “was not beating in the right way!”. Giulia is Marta’s mother, born with one complex congenital heart disease, incompatible with life. This is what they told her after the first checks in the twenty-second week of pregnancy. A condition that affects one in a hundred children in Italy.

“Is called “Tetralogy of Fallot” and sometimes brings with it rare genetic syndromes. Amniocentesis, malformation, syndrome, life, death, even abortion. I heard everything, I read everything (on the internet), until I understood that, however it was, my husband and I would keep the baby. We decided to call her “Marta” because it means “mistress”. From that moment on she was mistress of every millimeter of my body: I ​​imagined her growing as “a big heart”, I knew that everything would be fine and even if someone said to me “poor thing”, I was happy ».

Marta was born on September 1, 2009. Immediately after the birth, Giulia was ready to have her daughter undergo an open heart surgery, as had been suggested by the doctors. Marta, however, was very strong and that surgery came after the first four months of her life.

“It was a heavy period: the hours of the day were marked by the beta blocker, the “life-saving” drug that avoided possible hypoxic crises. THEIn a certain sense, we experienced current situations, because with her we could not enter any closed place other than the hospital to test saturation. Whenever a friend or relative came to visit us, the questions were always the same: are you okay? Do you have a cold or cough? In short, we had to be one hundred percent precautionary against his poor health ».

The surgery that saved the life of Marta, now eleven with a very normal life, except for the controls and the competitive sport that is forbidden to her, took place in the hospital Sant’Orsola of Bologna. There where Giulia met a second family. That of the doctors who followed his daughter e the Little Big Hearts association, of which today she is an active part, as a mother and as a volunteer. A point of reference for parents from the first moment of diagnosis up to the checks, which in the case of heart disease never end.

“Everything went well because I was lucky. From the moment of diagnosis, the Sant’Orsola Polyclinic took charge of me, in the Operating Units of Cardiology and Pediatric Cardiac Surgery today directed by dr. Gaetano Gargiulo. When I first saw him and talked to him, I thought I was facing a superhero. Upon entering the ward we were greeted by Cristina, the nurse, who struck me for her sweetness and extreme preparation. The morning of the surgery I looked at “my doctor” (Marta was operated on by the team of Dr. Gargiulo, by Dr. Carlo Pace) and I felt a strange sensation: of fear, mixed with hope ».

Today Marta undergoes checks every year and a half. Inside that hospital which for her is also a bit like home and family. Here, the Bolognese association Piccoli Grandi Cuori launched on IdeaGinger, thanks to the announcement “We do not stop” of the S. Orsola Foundation of Bologna, the crowdfunding campaign ColoriAMO the Hospital: beauty is care. The goal is making the hospital environment where young patients are welcomed a more humane and reassuring place. Portare the beauty in the hospital to reduce the perception of medicalization in people forced to live the hospital spaces assiduously together with their families and to face physical and psychological paths linked to the disease and the foreign environment.

«I almost look forward to every check: for me to return to that place, that magical place, to see these people who do incredible things every single day, giving hope to families like mine, making possible what you thought impossible at first, is something exceptional. And there is a need to make it known. There is a need to give courage to many families ».