We’re running out of time for my son’s surgery! If a miracle was to happen on its own in his life, it already did, even more than once. Now, we need your help to achieve the impossible.
My child was not supposed to survive the very first day after his birth, but – hidden from death in my arms – he has been fighting it for over 6 weeks. Now, 5 years and 3 surgeries later, we know that no miracle will happen anymore, and I, as a mother, will not be able to protect him. If there's too little oxygen delivered to his heart, Sebastian will die in a pain incredible to imagine.
Sebastian was born 5 years ago with a critical heart deffect, which happens once in a tens of thousands births. Still, in 2014, the era of prenatal medicine and diagnosis, no one was able to predict this. How could such stories even happen? Well, in a perfect world they simply do not. That ill-fated day, sanitizing liquid has spilled and damaged an ultrasound. What sounds like a terrible joke, turned out to be a reason for a wrong diagnosis. That day, I left my doctor's clinic without knowing that the child growing in me suffers from a serious disease.
Born in silence...
Sebastian was born on October the 1st, as a big, weighting nearly 9 pounds baby. Everyone was happy to see the baby, not knowing that the newborn Sebastian was about to start the biggest fight for his life as soon as he arrived at it. I was convinced that my baby was healthy and simply calm, but Sebastian just did not have energy for crying. His disease was fatal, critical - the heart was not connected to the lungs - no chances to survive with no medical support.
Ductus arteriosus Botalli - connection of the pulmonary trunk and the aortic arch, allowing blood to bypass the lungs, normally disappears by the second week of a newborn's life. For some incomprehensible reason, this connection did not perish in Sebastian's heart, allowing him to stay alive while keeping the basal life functions. He did not cry, because he did not have nergy to do so. He bruised, the signs being covered by the newborn jaundice. But the truth was sore, and about to be unveiled.
...And the irony of fate - I took my baby to a doctor's practice for the regular vaccinations, while his heart was already counting down to plunge in silence. A doctor examining Sebastian turned pale and stammered: "You have to go to a hospital as soon as possible! We need to call an ambulance!"
I did not know, what was happening. I am not able to describe what I felt, when those people started to rescue my child, while in my consciousness he was just a healthy baby. I have heard only sheddered sentences: "...with such saturation he has no right to be alive...", "... we will not make it, we need to go to Kielce...".
In Kielce - the region's main hospital, Sebastian received a medicine that sustains life until surgery. An ambulance took us in turn to the Children’s Memorial Health Institute, the most specialist pediatric hospital in Poland. There, one by one, diagnoses were made. A serious condition, severe defects, it was not known whether he will live.
At that moment, I felt horrible, like my heart was pulled out of my breast and ripped out. That very morning, I have been dressing my healthy baby, changing his diapers, feeding him... and then, the same evening, someone was trying to tell me, that this everything was just a beautiful dream, that has passed - and now, the horror was about to come.
For so many days, I have been cuddling him in my arms, and now, he was there in a glass box. Innocent, connected to cables, examined and diagnosed by various machines. The only thing I could do now was to touch him, hold his little hand, just for a moment, so that the oxygen does not escape from the incubator.
The time-buying surgery…
Sebastian's heart got artificially connected to the lungs. This saved his life, enabled the oxygen to reach the heart and the other organs. There was no other possibility, but his heart was still not fixed.
The yellow door behind which my world closed.
The 3rd surgery was incredibly tough, as the doctor did not exclude the possibility to fix the heart defect. I remember this day very well, as I, the mother, was supposed to prepare my son for this operation. I have been waiting for a call from the operating theater, at the same time remaining calm and putting my baby boy in a good mood. This day was a proof that a mother can do anything for her child! I was scared to death, at the same time smiling and caressing his head.
A nurse came - she said we need to go downstairs. "They have called". I will never forget this picture - my little son on a wheelchair, holding his favorite blanket in his hand, going down on the elevator. The moment of the separation has come. I did not know if I would see him again alive, I wanted to cry at last - I promised that I would leave just for a while to bring him candies, then he went on alone with the nurse.
The surgery time was expected to last between 7 to 10 hours. It was tough - the yellow door, behind which I could only send my prayers and thoughts, remained brutally closed. After 4 hours doctor Moll came out and told me he did not undertake the full defect's correction due to the possibility of the heart's right ventricle not being able to sustain the exercise. He has decided to finish the surgery, for a more detailed explanation I was supposed to come to his office later. The most important thing at that moment was Sebastian to get well.
The parents of children operated at this hospital unit always hope for a miracle to happen. Understand and support each other, when their children’s' lives are at stake behind the yellow door.
The doctors managed to buy some time for Sebastian again.
Sebastian’s heart is not connected to the lungs. He lives thank to doctors, who have linked his organs artificially. A sort of an emergency connection, which is far from being a perfect solution, as it slowly leads to pulmonary hypertension. Sebastian’s life is endangered! Today, with a weight of 37.5 pounds, his heart on the “emergency support” still manages to make it, but Sebastian is growing and when he reaches the weight of 44 pounds, this kind of support will not be enough.
There is no life with no oxygen.
Sebastian’s heart – and life – might be saved by the world’s famous children's cardio surgeon, Prof. Frank Hanley from the US, who is an outstanding specialist operating the most serious cases of heart defects. He is also the only one who has taken the challenge to perform a surgery on Sebastian’s heart and thanks to him I know, that my son’s life can be saved. Professor Hanley agreed to lower the surgery’s cost by 50%, but we still need more than 2.5M PLN! 6.5 pounds in weight – this much time Sebastian has been given by the doctor.
I beg you for help. As his mother, who has escorted her child three times to the operating room, whose child has been saved 3 times and who has to go through this once more. I am as much scared as I was during the very first time, but if I want him to stay with me, I must accompany him to the next surgery door. I am afraid to go through this once more, and to wait behind the closed door. But without the surgery my little boy has no chances to stay alive. I love my son for life, and as the mother I will do anything – and everything – to save him.