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One day during a check up a health visitor asked me if Kasia was being hit. Tears welled up in my eyes, because I wouldn’t dream of hurting my little girl. The dark shadows under her eyes, blue fingers and nearly purple lips are symptoms of a potentially fatal heart condition!
Kasia’s condition is deteriorating extremely fast! Without an operation, I will watch the slow and very painful death of my child. Unfortunately no one in Poland or Europe will attempt fixing Kasia’s heart. The only man in the world who gives us a chance of saving our little girl’s life is Dr Hanley, a surgeon from Stanford in the USA. If Kasia doesn’t go there - she will die...
Three difficult operations in Poland did not deliver a substantial improvement. They did prolong Kasia’s life but did not save it! She is still carrying a ticking bomb in her chest. Tests confirm that her condition is deteriorating. As her mother, I can see what’s happening - there are days, when Kasia will have a sudden fall, as she doesn’t have the strength to carry on walking. Sometimes she lifts her arms up to me on the stairs, because walking up a few steps is too much for her. I can hear her breathing become more and more shallow. I can feel her life slipping through my fingers. My heart breaks, when I see my little girl in such a poor condition, but as a mother I will do anything to keep on fighting!
We found out about her heart defect during pregnancy but no one expected the situation to become so dramatic after her birth. She was taken to another room straight away - for extra tests. A little while later my husband came back. Straight away I could see that something was the matter. “Our baby may not survive. Her heart is not quite right...” In the test results we could see several diagnoses: congenital pulmonary valve stenosis, congenital heart defect consisting of pulmonary atresia, tetralogy of Fallot. As well as that, both Kasia’s pulmonary arteries are malformed, which causes hypoxia and blue skin tone.
I couldn’t have imagined what it would feel like to simultanously welcome and say goodbye to my own child. I was lying in a different room from Kasia and losing my mind. Every little noise in the corridor made me panic. I was afraid that someone would come in and tell me that her little heart had stopped beating... Surgeons decided to operate for the first time when Kasia was almost three months old. One of the worst experiences for any mother is the moment your child is taken into the operating theatre and you don’t know if you’ll see ever them alive again. You then spend hours waiting in front of the white operating theatre door, not knowing what to do with yourself.
Kasia came back to us but when I saw what state she was in, I sobbed over her cot. Sometimes I had to look away as I couldn’t watch her suffering. My whole world was lying in the huge hospital bed and fighting for her life. There was a long, red scar on her chest. She was very poorly. She wasn’t breathing independently. She was covered in cables and tubes. From a distance, you could barely see her...
When we finally took Kasia home, we were happy and terrified in equal measures. How do you care for a child, who is so very sick? We knew the worst could happen if we missed one warning sign. We watched over her day and night. We listened to her breathing. At night, instead of watching her calmly sleeping, we checked on her fearing that something terrible had happened.
The beating of her little heart marked and still marks the rhythm of our lives.
Unfortunately in December 2017 another operation was necessary. Her arteries were not coping, they were too narrow, and her blood was not reaching her lungs. Kasia, 1.5 years old at the time, did not have the strength to get up. We were as worried as the first time round, as the fear doesn’t get any easier to bear. You can’t get used to the fear you feel when you walk your child to the operating suite, when she disappears behind the door with the surgeons. The operation was successful, but the improvement was only temporary... One year later it had to be repeated.
Kasia is now 2.5 years old. Sometimes she points to her heart and says that the doctor will fix it. I know there is no such doctor in Poland or in Europe. Not one agreed to operate such a complicated birth defect.
I sent Kasia’s test results to Professor Hanley, an American specialist who operates on such hearts. He replied with a treatment plan and classification! Among other things, Professor will widen the pulmonary arteries and remove the septal defect. The attached cost estimate knocked me sideways - over 1.8 million US dollars for my child’s life! For a moment I felt it’s not realistic to find this sort of money. I cannot even imagine it myself. But for Kasia - I believe in miracles...
This operation means life for my little girl. If it doesn’t happen, I will be left waiting for the day when I say goodbye to my child. Her heart is my whole world. As long as it’s beating, I will keep on fighting! I look at days in the calendar in horror. I spend nights thinking about one thing: to make it with the operation before Kasia’s condition deteriorates too far!
I’m here because I know that only you can help me save my child’s life. Please, don’t let her go...
-Gabriela, Kasia’s mum
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