Agatka lives thanks to the the large group of amazing people who helped raise funds so that our baby would be in the best medical hands after childbirth, who has saved many children's hearts. Professor Malec saved her. The little girl is so tiny, and she has two serious operations behind her and she will soon have another one.
One look at the doctor was enough…“Heart condition, abnormal features, cleft lip, recessed jaw, microcephaly, most probably the baby has various genetic disorders, everything points to Patau syndrome.” The words hit us like a bullet. Within a few minutes our happy and carefree expectation full of hope turned into a drama. Humility lesson. It was a very painful realization that we were so small and helpless when it came to the condition that affected the tiniest and most vulnerable part of our family.
More tests came, long periods when we were waiting for results, looking for information about what we can do for our baby. I thought that if the ultrasound image had been so obvious, the results would be only a formality… We were waiting for a diagnosis as for the sentence, these were the most difficult moments in our lives .. We didn’t even touch each other yet, couldn’t look into each other’s eyes, but we already started saying goodbyes… ,.Only Marysia, our eldest, saved us from madness. Although we wanted to shut ourselves in the darkest of rooms and every day scream out our grief, we had to pull ourselves together and keep on living - for her…
Weeks passed, diagnoses changed. Ultimately, genetic defects were ruled out, the “only” thing that remained was the heart condition - double outlet right ventricle with ventricular septal defect and transposition of the greater arteries. It’s a difficult name and the treatment is even more difficult, but luckily there’s a chance of saving the life of our Agatka. Under one condition… Her heart defect has to be treated by the very best doctor. One that can perform miracles on the spot. We found him in Germany, although he’s originally from Poland. His name is Professor Edward Malec.
Thanks to more than 10,000 good hearts, we managed to go to Germany to give birth. Agatka was born on November 22, 2018 and immediately went to ICU. At the beginning it turned out that apart from a complex heart defect, cleft lip and palate, Agatka has one more serious health problem - no connection between the stomach and the esophagus, and this irregularity had to be first corrected.
The plan assumed that perhaps the heart surgery would be able to wait for Agatka to grow older, that after gastrointestinal surgery she can gain weight and strength, and only then would the heart be operated. Unfortunately, after a detailed diagnosis, it turned out that deterioration of Agatka's health caused another, undiagnosed earlier heart defect - aorto-pulmonic window (APW). This is an extremely rare heart defect and difficult to detect, which was operated on January 4, 2019 by a reliable team of cardiac surgeons with E. Malec at the helm. We were extremely impressed by the work of specialists: cardiac surgeons, cardiologists and nurses, all of them did their best to help Agatka.
For a month we have been back home and we are waiting for our daughter to gain weight. Ideally, Agatka would be able to gather strength for a complicated heart operation for several months, but we must reckon with the fact that the situation may deteriorate day by day and we will be forced to return to the Clinic immediately.
It is difficult to describe the stress in which we live, the ever-recurring thought that at any time Agatka’s condition, may collapse and there will be an immediate need to return to Germany to urgently operate on her heart ... We cannot imagine that our precious daughter could have ended up in other hands than specialists from the University Clinic in Münster. It is Professor Malec and his team who know Agatka's story best. That's why we are asking you for help, once again ... We would like to have the luck to fight this crucial fight for life with the help of a master cardiac surgeon team for whom there is no hopeless cases.
It is amazing that such a small person can fill the whole family life. Agatka’s each heart beat is a miracle. Each moment spent together is a priceless time to appreciate the presence. We have been fighting for our daughter’s life for many months. Thanks to good people, so much has been done already. We feel a lot of support that gives us strength. We know that we will never pay back this debt of gratitude to you, but we cannot give up now ... We must save her. We believe that you will help us in this!
Marta and Mariusz - Agatka's parents