I am 5 years old and I am fighting for my life a second time.
Lifesaving skull surgery for Oliver.
Ends on: 17 September 2017
W dniu 12 października 2017 r odbyła się operacja czaszki Olusia. Wszystko odbyło się bez żadnych problemów, zgodnie z planem lekarzy. Już po 2 dniach Oliwier chodził i się bawił. Synek dochodzi do siebie i wkrótce wracamy do domku. To wszystko dzięki Wam!
Z całego serca Dziekujemy, za wszelkie wpłaty, udostępnienia i ciepłe myśli kierowane w stronę Olusia. Przesyłamy zdjęcie Oliwiera, który z dnia na dzień czuje się coraz lepiej!
Monika i Mariusz
Every mother after childbirth dreams only about taking her baby home as soon as possible, to swaddle it for the first time, feed it, give it a bath. I had been waiting for this moment for 99 days! For three months I had lived only off unimaginable love for my little baby and off crippling fear, wondering whether my son will live or not. Today I am scared again because if we don't manage to fundraise enough money for the surgery he needs, Oliver's life will be in great danger once again.
My son Oliver came into the world too soon, much too soon, as it happened 12 weeks before the due date, weighting less than a pineapple. One pound and 15 ounces of happiness that momentarily stole all my attention, that won my heart over, that I couldn't even hold, hug...
The doctors had only approached the incubator at the intensive care unit, wrote something down in the patient record and quickly dissapeared. Now I understand that it is extremely hard to predict anything when it comes to such a prematurely born baby, it is almost impossible to foresee for more than 24 hours but nobody understands what feelings a mother standing behind a glass wall has to overcome, as if some part of her body had been taken away. Every day that Oliver had lived through raised his chances and at the same time new diagnoses brought them down all over again. Today I can say with full responsibility- the worst moments of my life have already happened.
It is almost impossible to describe what a mother feels when at every doctor's glance she goes stiff, when during yet another conversation she finds out something bad. Prematurity puts life in a great danger but nobody talks about how dangerous it may be for health. Premature babies are at greater risk of not seeing, not hearing, being paralyzed, disabled. Oliver had an intraventricular hemorrhage of grade III, a heavy case of bronchopulmonary dysplasia, anaemia and an increased pulmonary pressure. I whispered to myself words of reassurance over and over again while he was fighting bravely, enclosed in the incubator.
When we were moved out of the NICU, it seemed that we had won already. Three months, the worst three months of my life had finally, happily ended with my son being discharged home. It still wasn't a regular farewell but a discharge with the referral to a Hospice because Oliver still needed assistance breathing.
I found in myself a lot of strenght and determination to fight for my child because I couldn't bear the thought that Oliver may be 'worse', a victim of my being not able to carry him to term. Horribly difficult, painful and arduous rehabilitation worked wonders. I was sure my son had overcome all the obstacles, that he would catch up with his peers and would develop normally. Enough of the suffering that he had been experiencing from the moment he was born. I was literally furious with our fate but I also felt that finally we have a chance of winning. That we are reversing the reality and that finally, we will overcome the fate of prematurity of our child.
And then, when we timidly started to believe in the bright, carefree childhood of our son- half a year ago the diagnosis was made- craniosynostosis, which means that the sutures that are between the bone plates in my baby's skull closed too early. Day by day, Oliver's brain is being more and more crushed by his skull. It also causes the deformation of facial bones and it seriously endangers the life of our child. Oliver's skull grows only in the front and the back of his head and not on the sides.
The doctor who was examining Oliver asked us where were we for the past 5 years. With so many problems stumbling our way nobody took notice of the most important one. Now, it is almost too late for the surgery. The bones of the skull closed and became very thick, tigtly enclosing the growing brain. Such pressure is carrying a serious risk of damaging his brain, or even death.
Intracranial pressure buildup can take away my son's sight and hearing. I cannot let it happen- I, his mother, who was fighting for him with all my strenght, who was suffering when he was suffering, who wasn't sleeping while he cried, I was late by 4 years with the skull surgery. Why didn't I see it earlier? Why didn't I feel it somehow, make the diagnosis myself? Oliver complained about headaches many times, threw up sometimes, and I still lived thinking that everything bad is all behind us. For this type of surgery when the child is 5 years old everything is more difficult, this is why the operation comes with a great risk.
When the surgeons will open the skull and reveal the brain, every mistake equals a tragedy. I know that there is no time for second thoughts and we have to act quickly. After seeing Oliver's CAT scan and MRI, a doctor from the Craniofacial Center in Dallas, Texas deciced to take on the challenge. The doctor has performed many surgeries like this one before, which allowed him to invent methods that minimize the risk of complications. This doctor has saved many children but the cost of the surgery is enormous. Years of dealing with Oliver's medical problems consumed a lot of money and we won't manage by ourselves anymore.
I turn to you, begging for help. Oliver should live a happy childhood instead of making memories at hospitals and suffering. I beg you, help us to win this time. Help us to give Oliver a real chance to live. He has fought so hard and so bravely... We can't let him down. Please help us.