Seven months Luke's parents were waiting for their child in peace. Then the tragic information came, after which the hours could decide whether the boy will survive. Ascites - so sounded the diagnosis that has changed in one day the whole happy family life into a nightmare. Urinary system of the child ceased to function and internal organs were literally floating in the bloated of the excess fluid the baby's tummy!
Such information means a 90% probability that the child will never see his parents, that he would die in the womb, before coming to the world! Our child was dying, the results of CTG showed that the heart loses rhythm. Those were the worst moments in our lives, because we could lose the most valuable, what we had. We could not be reconciled with the fact that he will not be in our lives - remembers the father of Luke. For everything was responsible a membrane, which appeared in the urethra, the so called posterior urethral valve. This mystery the boy's body concealed for a long time after birth yet.
Luke survived, using a 10% chance he got, and thanks to the rapid intervention of the doctors came into the world in 33 weeks by caesarean section. It was literally torn from the belly there, so that doctors can save his life. Safe mother womb turned a death trap for a child who at any moment could die due to infection of the body. Childbirth should not take place in such circumstances, when doctors a moment later fight for the life of the child and the parents can only passively watch.
Luke was born tiny and needed a respirator to breathe for him, and what happened after that, the doctors described as a miracle. From the body of the boy 800 millilitres of fluid was pumped out! Such a shock was not expected even by doctors. The hospital founded to Luke a catheter that caused urinary excretion from the body. It solved the problem only temporarily, because when the baby finally went home, the problems returned.
Urine poisoned tiny body, and the parents did not know how to help their child. High fever, aversion to food and constant crying, that's all caused a panic, because in a moment came back the memories of what has happened to our son just after giving birth - mention the parents. The boy was taken to hospital in the second month of his life with symptoms of urosepsis and there the doctors began to look for the cause. The mass of conflicting diagnoses at once and in the end the decision. To enable the properly urine evacuation from the body a fistula was necessary to discharge it out. It sounded scary, but what was it in practice the parents learned only later.
Doctors made a hole in the boy’s stomach, where the urine from the bladder had to escape to the outside. It was to be all right, but it was not. This terrible hole in the belly of the child did not fulfil its function and damaged kidneys twice. The abdominal fistula was eliminated and 2 uretero-skin fistulas were selected on the back, which stay so far. The fistulas cause that excess urine is excreted out just through the back! Part of the urine goes into the bladder, and the general overpressure in the urinary bladder diverticula led to recesses of bladder which is best illustrated by the situation in which the ball is excessively inflated by air, and a seam bursts, through which the thin balloon reaches the outside. Such diverticula is a huge threat to the child, because they become a habitat for many dangerous bacteria that can threaten the health and life.
For Luke, however, there is a chance to get rid of not only the holes in the back, bags and diapers, but also to fight for life, which in this story is the most important. The situation in which the boy is found requires an overall "reconstruction" of the urinary tract, the removal of diverticula of the bladder, ureters graft and extension of the left ureter. It's a very complicated operation, which carries a number of dangers. Much will also be found in the middle of it, because it is feared that the removal of diverticula will cause a drastic reduction of the bladder size and the implantation of the muscle flap will prove necessary. What is most important in this procedure? The fact that you can not afford a mistake. Every failure, every bad decision can make the difference to a child's life, who now lives with fistulas on his back and is waiting for help. That is why the decision was made to have surgery at Boston Children's Hospital.
We kindly ask for a chance to do that our child can live a normal life like other children, without a burden of the stigma. He could be born healthy and enjoy life today. Unfortunately, fate was more cruel to him. Now, when Luke is already aware as a boy, he increasingly sees the differences between himself and other children. It is increasingly difficult to answer further questions, and it is so hard to see how much he has to suffer. Please, help us fight for our baby, which still has a chance for a healthy life. Without your help we can not manage it.