"A little heart can have a good life" | Chronic

One in every 100 people is born with conbad heart disease, is as common as autism and 25 times more common than cystic fibrosis. It is used around the world this week to raise awareness. "Together with other parents of children with conbad heart disease, we decided to join this global movement to raise awareness of the importance of diagnosing and treating these conditions," has explained Jimena Gonella, one of the founders of "Protect the heart" and mother of Guillermina, a girl who suffers from this pathology.

Guille is 6 years old and was born with Hypoplastic Left Heart Syndrome (HLHS), a rare and complex conbad heart disease. He will therefore live all his life with the right half of the heart. Her illness was detected during pregnancy and since birth she has been following the palliative process of Dr. Norwood, developed in the 1980s at Boston Children's Hospital.

He underwent three open-heart surgeries (the first after three days of life) and three cardiac catheterizations. "When they told us that our daughter was going to enter the operating room after a few days of life, the world came down"Jimena is remembered.

In 2014, the team that accompanied her to Argentina decided to dissociate herself from her treatment. Thanks to the #juntosxguille solidarity campaign, she went to Boston, where the team of Dr. Porras and Dr. del Nido was able to complete the palliative process.

Two years later, he became the first person in the country to obtain a precautionary measure from the Federal Court recognizing him the right to continue his treatment abroad, at the Boston Children's Hospital. "We understand that there are cases where this right can not be limited to the borders of a country or a medical record book"He added.

After all that was to happen in Guille, several families decided to badociate under the slogan "Protect the Heart" to promote two bills related to the improvement of the quality of life and to access to the diagnosis and treatment of children who have heart disease.

Jimena says that Guille's story can inspire many families not to give up because their daughter has shown that "a little heart can have a good life"

What are conbad heart diseases?

Conbad heart diseases are a group of diseases that are characterized by the presence of structural changes in the circulatory system or by the functioning of the heart muscle, produced during pregnancy. Most are not badociated with genetic causes but their origin is unknown.

In addition, it is the most common conbad defect at birth:

1 in 100 children is born with conbad heart disease.

– Between 5 and 9% of conbad heart defects are complex and require prenatal screening, rapid access to surgical treatment and follow-up by an interdisciplinary and specialized medical team throughout their lives.

How they push this law

"Let's protect the heart" promotes the approval of Bill S-4942/17, which aims to increase public awareness of the diagnosis and treatment of conbad heart disease, as would February 14th, National Conbad Heart Disease Awareness Day; and S-3182/17, which guarantees the right to health and full enjoyment of the human rights of people with these conbad conditions.

However, despite the struggle, none of the projects managed to treat a treatment. One of them would make February 14 National Day for Conbad Heart Disease, which would imply that the state is conducting awareness campaigns on this subject. However, the reality is that he came to the board several times but did not have a quorum.