22nd January 2008. That day Zuzia was born. At 9:25 she started her losing battle which has lasted seven years.
4 kg, 59 cm, 10 points in Apgar’s score...
We were very happy. Carefully waited, beloved and ideal in every single inch, despite polidactyly – she has additional toes. Our happiness lasted only few hours. Very slowly we started to receive some information about Zuzia’s state of health: a lack of skin on her arms, legs, ears, back, lips, huge blisters, necrosis on feet, problems with ductus arteriosus closure, blood flaws to the brain, congenital pneumonia. In the evening Zuzia’s state was described as poor. Health parameters were very bad, Zuzia lost 1 kilo from her initial weight.
We began a fight for her life. The first of many that we had to deal with through these seven years. For the first two days no one really knew what was the reason of all these wounds and blisters. Doctors suspected bacterial dermatitis. We believed that the antibiotic would help. After three days the first time we heard what Zuzia suffered from Epidermolysis Bullosa. EB is an inherited connective tissue disease causing blisters in the skin. The disease is incurable, and lasts until the end of life. The name was strange, unknown, hard to remember. It was hard to come to terms with the diagnosis, to look at the suffering of our own child. It shouldn't have been like this.
After a week there was no trace of pneumonia, strokes began to absorb, the ductus arteriosus hole closed... Zuzia wanted to live, despite the fact that fate treated her so cruelly. After three weeks, the skin began to grow back slowly, although new blisters were formed constantly. The worst were the feet: the living flesh with necrotic changes.
When we finally sorted all this stuff out: illness, care, awareness about the disease, we had to fight another battle for her life. During installing the central line, Zuzia was infected with Staphylococcus aureus. Infection took the whole body, particularly the hip, and there was a high risk that Zuzia wouldn't be able to walk in the future. After taking huge doses of medicines, the Zuzia's body started to give up. The skin that had grown up, was destroyed in a few hours, large blisters and sores appeared again. Antibiotics were planned to be given for three weeks. We counted each day. On the one hand, we were scared with the defects in the skin, on the other, we knew that we had no other choice, the antibiotic had to be used.
In the meantime, we received skin biopsy results. All the time we hoped that Zuzia's EB was of some milder form. Doctor blew our hopes: "I'm sorry, Zuzia has the heaviest form of EB". We took this information without emotions. In the end after two months we were allowed to take Zuzia home. At home, we began to study the disease and how to live with it. It was a very difficult time, full of despair, tears, but also beautiful moments when we looked at Zuzia who was smiling and babbling...
In the Institute of Genetics in Warsaw we did research on the carrier. We also consulted Zuzia in the Genetic Center in Poznań for polydactyly. Polydactyly often occurs with other genetic defects. It turned out that the extra toes are caused by external factors that appeared when I was pregnant. What kind of factors were there? We do not know till this day...
We have struggled with chronic anemia and underweight, which is associated with a large skin defect. The body can't keep up with regeneration. This state is also caused by a problem with the assimilation of certain drugs. When Zuzia was two her hands started to close up, the fingers grow to the inside of the hand. Every day Zuzia wears bandages and special bands that delay the formation of contractures and adhesions. Only a year ago Zuza wore specially shaped rails, now this is no longer possible.
Last year in August, Zuzia had PEG (percutaneous endoscopic gastrostomy) inserted. A gasric probe was necessary to save Zuzia's life and also to prevent delays in development. It was the last moment. Zuzia was so weak that during the treatment her condition suddenly worsened, she stopped breathing.
Zuzia has partially overgrown esophagus, does not take solid food at all. Not because she does not want to, but because she cannot. She is fed only by the probe. We also know that the blisters are formed inside the body, in the intestine, rectum... We have no method to cure blisters inside. The only thing we can do is to comfort, hug and eliminate pain.
We have never lost hope that one day Zuzia will be healthy. When she was born it was said that the drug would be discovered up to 25 years. When she was three this quarter of a century was reduced to 15 years, then to 7. This year we heard that a therapy already exists. Zuzia can be healthy. We will do our best to achieve this, despite the fact that Zuzia's health was valued at nearly $ 1.5 million.