“A real boulder, which weighs on the heart”: he describes it like this SIMON, young mother, the diagnosis of congenital heart disease of her baby, born a few weeks ago and already operated on. “I discovered that something was wrong with the heart during the morphological ultrasound in May. In a very short time, so many inputs, the suspicion of heart disease, so much fear. And then the risk of genetic syndromes associated with heart disease, the haste to understand a who to contact, the anxiety of arriving at the birth of the little one “prepared” for a very hard test to face. Browsing online we discovered the existence of the association Little Big Hearts and the shelter Polo of Hearts, where we then stayed in the period before giving birth, and in the post-operative period of our son. Soon we got an echocardiography at the Policlinico di Sant’Orsola in Bologna. The doctors Perolo e Balducci they confirmed the diagnosis and explained the whole process that awaited us. We managed to metabolize thanks to the support of Sara, the psychologist of the association, whom we met in the ward, in June, when we came to do the fetal echocardiography “.
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It is important, in these phases, to be lulled not only from a medical point of view but also from a psychological and emotional point of view. Discovering the congenital heart disease of a child who is still pregnant, thanks to prenatal diagnosis, can help to find the time to accept and metabolize, to organize themselves, to avoid having to decide “in an emergency”. Step by step, therefore, it is time to give birth. Immediately after the summer. “I entered the delivery room at 2.30 am and he was born at 4.21 – remembers Simona – I asked to see him for a moment, before they transferred him to Cardiology and Pediatric Cardiac Surgery: I remember that he had a tube in his nose, for oxygenation, and he was already trying to pull it away with those little hands. There were endless moments. The surgery, in early October, began at seven thirty in the morning, somehow the morning of waiting has passed and just when we couldn’t do it more came Sara, the psychologist, to support us in the last hours of waiting. We had the news that everything had gone well at 3.45 pm, when we met the cardiac surgeon, Emanuela Angeli. We knew that she specializes in transpositions and for that we were quite calm. I remember that when we saw her, at the exit of the operating room, she surprised us: after so many hours of surgery, I imagined her tired, and instead she was calm. He told us that everything had gone well and that there had been no complications, I remember that the anesthetist was moved with us, by our expression. We were happy. For us it was a second birth, because Matteo’s was a heart disease incompatible with life “.
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The story of Simona and her baby tells how important the process of recognizing these conditions already in the mother’s womb is to organize the birth and then plan the treatment. “80-85% of congenital heart disease is identified through prenatal diagnosis, according to” Pre-Covid “data – reports Anna Balducci, pediatric cardiologist at the Emilian hospital. On average, we see 300 patients a year. “Before even being born, the child becomes a patient. Each heart disease has a broad spectrum of anatomical variability, so it is essential to try to identify which factors can predict a higher surgical risk or more surgery needed, of short and long term morbidity.
Once the mother is given birth, she remains in Obstetrics: the child is born, is transferred to the Department of Cardiology and Pediatric Cardiac Surgery, or remains in the Neonatal Intensive Care Unit where he is also assisted by cardiologists. “For selected cases we are the ones to alert the psychologist of the Little Big Hearts Association, who contacts the mothers even before they arrive here, to then activate the psychological path before birth. The support of the association in all phases, from the reception to hospitalization and discharge is fundamental “. “The prenatal diagnosis is more and more precise even in the case of complex heart disease – he says Antonella Perolo, medical director responsible for fetal cardiology at the S. Ursola obstetric clinic: thanks to this, congenital heart patients can be born here and have the hemodynamics room ready and alerted, without wasting a minute. Ours is one of the few centers where the prenatal path is complete and all in a single structure: the patient does not have to move, here the diagnosis is made with subsequent cardiological, surgical and obstetrical consultancy, genetic counseling and any investigations. prenatal genetics on the fetus and / or parents. Here, subsequent cardiological and obstetric checks, any laboratory tests, obstetric visits and cardiotocographic traces are performed. The methods of delivery are established, patient care is planned at the Pediatric Cardiology and Cardiac Surgery “.
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The children who are operated on are then followed over time: they must be checked first by pediatric cardiologists, then by adult specialists. They are called GUCH (from the English term for Grown Up Congenital Heart). The Piccoli Grandi Cuori association, moreover like several others in Italy, also takes care of this path. As he explains Gaetano Gargiulo, director of Pediatric and Developmental Cardiac Surgery at the Irccs Policlinico di Sant’Orsola in Bologna, “this is very important also and above all for the girls we operate, who become adults and therefore have special needs, both naturally in development , both when they have to become mothers. Pregnancy can be a problem for some of them, but it can also be solved for many women with congenital heart disease, allowing them to live an absolutely normal life. “
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For this reason there are GUCH clinics which are accessed by patients who have to carry out check-ups according to the indications of cardiac surgeons, and patients from other centers who need a therapeutic diagnostic framework. In addition to psychological support, through this clinic it is possible to activate consultancy paths with the services of gynecology and obstetrics, dentistry, radiology, orthopedics and general surgery.
The book is presented on Saturday 4 December “Vito and the recipes of the heart. A fairytale to bring out a smile“in support of Piccoli Grandi Cuori Onlus. The volume was born from an idea of Boh! Edizioni with the contribution of the association and the families of children born with congenital heart disease, who kindly made their intimate recipes available. Collaboration is fundamental. of the comedian and actor Vito, which has always been linked to the association: the purchase supports the activity of the Little Big Hearts and in particular the Polo dei Cuori shelter where cardiopathic and transplant patients and their families are hosted free of charge. Because one in a hundred children in Italy is born with congenital heart disease. And he may need help.
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