Our princess was born with a severe congenital malformation, a single ventricle. Added to this pathology was a TGV, as well as other small anomalies in her pulmonary arteries and aorta, necessitating open-heart surgery at birth to perform the Norwood procedure with Shunt.
As of my 20th week of pregnancy, we knew that Livia had a different heart and that she would have at least three palliative surgeries before she turned 4, to enable her to live a life similar to that of other children. Of course, we never know what her journey will be, because despite the similarities with other children with the same prognosis, each child writes his or her own story over the course of operations and hospitalizations. Nevertheless, we decided to give her a chance and support her through this great ordeal.
From the moment she was born, the en Cœur Foundation was present. First, wanting to breastfeed, I received the loan of an electric breast pump to help me stimulate and collect my milk. As our daughter couldn’t drink in her first days, let alone be put to the breast, this enabled me to maintain a good production and pump my milk every 3 hours to build up reserves for when the time came. We also received meal vouchers every day during her many hospitalizations. What’s more, a volunteer came to see us practically every day to give us moral support, coffee and chocolates during the surgeries and hospitalizations.
When Livia was discharged from the CHUL after birth, she was almost 2 months old. We benefited from the loan of a saturometer from the Foundation for 1 year so that we could regularly monitor her saturation at home. Today, Livia is 6 and a half years old, a little girl full of life and so radiant. To this day, whenever we must be hospitalized, the Foundation is always there for us.
Despite the roller-coaster ride of emotions, we’ve always felt extremely supported and have never felt alone in this whirlwind. Our ray of sunshine brings us all the happiness in the world, and all these efforts would be repeated without hesitation.