Get to know Piet

Written by Piet’s mom, Beate.

5 Minutes

Piet loves life

Even before birth there was no doubt that Piet would be born with a complex heart defect. This gave us time to adjust to the fact that the diagnosis would require multiple operations and hospital stays. Shortly after the birth, Piet was transferred to the children’s intensive care unit with access to his hands and feet. The separation from my just born son is very difficult for me. Three days later, the first vital operation on the heart. Everything went as planned, but the sight of the baby surrounded by tubes was not so easy at first. After a month we were allowed to go home with Piet and finally enjoyed normalcy. Piet did really well and developed great. After six months, as planned, the second operation was used in the induction for the missing pulmonary artery. This operation also went according to plan, but Piet had some problems after the operation, so that it took us two months to be discharged. The time was very difficult for his “big” three-year-old brother, as one parent was always missing.

On Piet’s second birthday we were again admitted to the hospital, because the values ​​had continuously deteriorated in the course of the check-ups. This was followed by several operations, the use of a pacemaker and finally complications that led to a resuscitation lasting several minutes. Piet suffered an additional hypoxic injury, but we were just infinitely grateful that he survived this incident at all. With the help of the doctors and an admirable nursing team, we fought for Piet’s survival together. His condition deteriorated even more frequently, so that he had to be transferred to the intensive care unit again and again. Several more operations followed. It was only three months later that his condition had stabilized. This was the most challenging time of our life.

That Piet is a fun-loving child and does not let himself get down is something he shows to everyone everyday.

Contact with the parents’ initiative

During these difficult weeks on the children’s cardio-station, the visiting service of the parents’ initiative for children with heart disease approached us and was there for discussions and offered specific help that is so necessary after such a drastic experience. Piet’s restrictions were massive, he could no longer speak, swallow and also no longer walk. After three months, Piet was released from the hospital, but we had a long way to go.In many months of intensive therapy, Piet regained numerous skills and impressed us with his perseverance, his own will and his incredible zest for life. He has an alert mind and exudes a lot of life energy. Piet’s positive nature, despite all the difficulties he has to cope with, strengthens us in our daily challenges.The contact with the parents’ initiative has continued to this day and has become an important component in dealing with the situation. We accepted the invitation to the regulars’ table and to various events. The network of affected parents and the associated exchange as well as the joint commitment for the benefit of our “special” children is extremely valuable to us.

Piet’s state of health can currently be described as stable but still fragile. Unfortunately, another diagnosis was added some time ago, pulmonary hypertension. Our path in life is and will remain shaped by illnesses and restrictions. Sometimes we reach our limits, are tired and drained, because the path is often very difficult. Piet’s brother Eddy has to queue way too often, but we’re doing our best and my husband and I are a good team. We perceive the beautiful moments very intensely because we know how it can be different.With its offers, the parents’ initiative also enables the families concerned to take time out. I personally love the mothers’ seminar, here I recharge my batteries and find myself. Eddy benefits from getting in contact with other siblings of children with heart disease. He regularly takes part in the riding workshop, in which he is also seen and noticed. My husband likes to talk to the fathers of affected children on the family weekend. For Piet, there are offers that can also cater to his special needs due to the disability. A really good feeling!