A kind heart with a very special need

 

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There are many photos of Zosia. Almost all of them are accompanied by her bright and candid smile. It seems as though she enjoys life just a bit more. For Zosia everything is an opportunity for expressing joy. She appreciates the smallest of kind gestures, leaves no smile unanswered and is always happy to share a cuddle. Zosia’s happiness and her parent’s joy about her existence are twofold. This is because Zosia was to have only five days to live once she was born…




Zosia’s mom underwent some prenatal tests. The probability of a genetic defect was 1 in 6000, a very small chance, relief…  Additionally a maternal serum screening test was administered and after the results it was said that the parents can sleep sound and without any worries. This is how things remained for the next few months.

 

 

 

  32nd week of pregnancy. It turns out that the little one is starting to rush trying to come into this world. Steroids are administered, but unfortunately some doubts regarding the baby’s health surface at the same time. A heart defect is suspected and further tests confirm it. Added to the heart defect diagnosis the parents receive news about an additional copy of chromosome 21. The baby will be born with Down syndrome. The words the parents hear are still a painful memory to this day: “It’s a lethal heart defect. Your child will live for three, maybe five days after it’s born. After that time the baby’s heart will stop beating”… For the next five weeks the parents lived with the certainty that their child will be born only for them to be able to welcome it, hold it in their arms… and say their goodbyes.




Zosia was born on a Sunday. The day of her demise was roughly scheduled for Wednesday… thereafter postponed to Friday. Zosia’s mother signed herself out of the maternity ward to be able to spent Zosia’s entire life with her, a life to be counted in hours. But Zosia’s case highlights that predictions made even by the best professionals do not always turn out right. Zosia surprised everyone and during her fifth day of life together with her parents simply went home.




A heart defect frequently accompanies the Down syndrome disorder. Unfortunately Zosia was not omitted by this. Zosia’s parents were working hard on making it possible for their daughter to be operated by the doctors they found trust in. Unfortunately apart from a single cardiac catheterization procedure any further surgical appointments turned out to be impossible to get. Zosia’s badly needed surgery should take place during her 8th month of life. Today Zosia has already been with us for 10 months. Zosia was fortunate enough to get a consultation with Prof. Dr. med. Malec and things worked out well; she has the chance to be operated on by one of the best heart surgeons in the world.




In the end we don’t know who is more fortunate, Zosia for having her life or life for having Zosia, who with her big smile brightens even the cloudiest of days. Zosia has already once before surprised everyone. With the help and support of kind hearts Zosia will be able to undergo her surgery and… once again just simply go home.