Till the end o April we have time to save Bartus' heart!
operacja zagraniczna u Profesora Malca
Ends on: 14 April 2017
Almost nobody knows how sick our little son Bartus is. And probably it would have stayed like that if not the fact we have not slept for so many months with fear and loosing all the strength that is so needed when living with a child with a severe heart condition. Such defect that can change our world one day and become the the worst nightmare. We thought that the most difficult task would be to create a family. Now, we know that the real task is much heavier.
We are the parents of a very sick 3 years old boy and we have only a month to collect the money that will save us! Whether we stay together depends only on the wonderful people and surgeons who will save Bartus. With fear we learn to live for almost 3 years and today only one thing is certain - fear of loosing your own child can not be bridged, tamed, denied or forgotten.
When you hugging your sick child, you think about his little heart beating while running, watching him breath when he is sick, with dread you read all the medication flyers because you know that one little mistake can break all your efforts. Therefore you are functioning all the time 110%. Because if something starts happening, you have to see it first, quicker than the others! Your son has a very rare and complex heart defect. Sentence - a lightning - that hit our little family and stabbed through. Inversion of left and right ventricular displacement - L-TGA Correction of large arteries, Ebstein syndrome and valve defect as well as ASD II - intraventricular septal defect. All these faults are hidden in his tiny heart and at any time without surgery can lead to the worst that we do not even think about. There was not even a day when I would not have thought of that. Doctors in Poland said - you have to wait, wait for the baby to be circulatory, wait because he is still too small.
Every visits were given a worry on the doctor's face, my hands clenched in fist and horror, because how much can we wait for a decision and listen to how bad it is. In hospital we got to only know that until Bartuś is cardiopulmonary, we have to wait. But wait, for what? To collapse until his heart will be completely ineffective? When, instead of cure, we will be trying to save his life at the last minute? How to live with? We have been searching all the hospitals in Poland, maybe someone will come up with an idea, determine the direction, take the surgery now. Now - not when it is not too late!
Finally we have found a cause and an idea at the same time. A reason to not wait indefinitely and stay helpless. Bartuś requires complicated Double Switch operations, atrial infiltration, and ventricular hemorrhage. One of the cardiologists said, "I can do this operation, but I have never done it before, please draw conclusions. After that he looked at the card again and added: please, save your child!
Munster (Germany) - there are parents looking for help, like us, broken, searching for comfort, rescuing, anything good, any chance. Finally, we consulted our child with one of the best cardiac surgeons in the world, Prof. Edward Malec.
Bartuś was qualified for the operation, but to make it all the way to live, the first stage must be held now, as soon as possible! First banding, which has the task of preparing the left ventricle to function as a system chamber. About the second stage doctors will decide within a year. Everything will then depend on our son's heart. Without surgery the capacity of the heart will decrease with age, the burden of the weaker chamber will increase and the heart will not be able to withstand it. We came home with a qualification card for treatment, with the amount of Bartus life and we looked in the eyes of a child who did not even know how sick he really is. He trusts us and wants to live so much. If he would know how many doctors shook head worriedly seeing his results, how many did not see the chance at all.
We have never seen another possibility, because our baby's life is really all we have. Now when I'm sitting at his cot, I watch him sleeping unconscious of what's waiting for him, so safe and tiny. I can not even imagine that it could not be. I would give my life for him, but no one would go to such a scheme with me, a mother who should protect him, but she trembles like a leaf in the wind of fear. I'm afraid we will not make it, we will not be able to show up in time with Professor Malec on time.
This awareness is probably the worst. I wake up at night, fearing that it's too late. That we did not manage, that everything is lost. I am the mother of a child, for whom life is not an unconditional gift, but only a chance. I do not know how to ask, because every word will be too small, but I believe that thanks to your help we will save him!
Please save our son!