Intensive rehabilitation and treatment
Ends on: 19 March 2022
He was born slightly earlier than planned. The circumstances were also much different from what we expected. Due to placental abruption and hemorrhage the labor procedure had to be carried out quickly. Unfortunately, only the first information provided by the doctors were positive...
During his short 8-month life, our son went through hell, so far he has spent half a year in hospital. Most of his short life… Shortly after his birth, Oliwier suffered from respiratory failure, pneumonia and pneumothorax.
The transfer to the Intensive Care and Newborn Pathology Department of the University Children's Hospital in Cracow was a rescue for Oliwier, a real tragedy for me. Due to the ongoing pandemic, there was an absolute ban on parents‘ visits... Our son was sentenced to fight for his life in solitude, and we to be given information by specialists over the phone. I still remember that fear caused by the every incoming phone call.
After seven weeks Oliwier was transferred to the Pediatrics Department, where we, as parents, could take turns staying with him. Finally, we were able to see him, touch his delicate skin, look into his eyes and thank him for the strength he had put into this fight. During this time, Sotos genetic syndrome was diagnosed. The diagnosis broke us, but we gathered our strength and continued to fight. It turned out, however, that this was just the beginning of our son’s horror and suffering...
The health issues seemed to be endless. Due to very high leukocytosis, he got another urgent referral to the hospital. A bone marrow biopsy, along with a CT scan of the abdominal cavity by reason of a lesion in the liver, were performed. Completely by accident, during the examination, a large tumor was detected in the area of the lumbar spine. Its location was very unfavorable. Oliwier underwent a severe 5-hour oncological surgery to remove the tumor. Due to the location of the tumor it was necessary to additionally remove the coccyx and one vertebra of spine.
Our brave son has been anesthetized so far 7 times since birth. This is an enormous burden for such a tiny person, however it was unavoidable due to various specialist diagnostic tests and the surgery.
Each subsequent diagnosis was traumatic for us. Oliwier has reduced axial muscle tension and increased muscle tension in the limbs, which turns ordinary dressing, bathing or feeding into a big challenge. He has a lesion in the 6th segment of the liver, gastrointestinal reflux with aspiration of food content into the bronchi, immunodeficiency disorders and many other problems. Due to feeding problems, as parents we had to learn how to put a gastric tube into Oliwier’s stomach to prevent dehydration.
Three weeks ago our son has suffered from a flexion attack; we were urgently referred to a hospital where another terrible disease was diagnosed - drug-resistant epilepsy, West Syndrome. This diagnosis took the rest of our strength and hope away. It is an incurable disease that steals everything: health, psychomotor development, all the skills acquired by our child…
Until his epileptic seizures, Oliwier was a very joyful and open child despite everything he had been through. Apart from the pain, his eyes showed joy – now there’s only suffering left. During the last three weeks, our son has been regressing in his development - he does not raise his head, does not focus his eyes on a toy, does not smile at his mother... The prognosis is tragic for children suffering from this insidious disease. Some of them die, those who survive the terrible therapy with heavy drugs and steroids are disabled. Our son additionally has numerous other burdens which make his situation disastrous.
Oliwier is currently undergoing combination therapy, to which he unfortunately does not respond. Presently, Oliwier has over 500-700 seizures a day in series lasting up to 40 minutes. With each attack, we have oxygen at hand in the event of decreased saturation and apnea. Oliwier often vomits during attacks and suffers greatly. We as parents suffer with him...
We look for help wherever we can. We contacted a doctor in Warsaw, a professor from Switzerland and a clinic in Germany. We are waiting for feedback on treatment options and their costs. We found information about clinical trials in the US on a new drug for West Syndrome - unfortunately our son cannot be qualified for them due to the accompanying diseases. We try to rehabilitate him, we do it privately, additionally we go to an osteopath. The costs of visits, treatment, rehabilitation, costs of possible treatment abroad are very high.
Our beloved son is still fighting, we are fighting too, although it is very difficult. Oliwier does not know what it means to be at home. Because of all the numerous stays in the hospital and the hundreds of tests performed, it is currently not possible to insert a cannula into his vein, it must be done by an anesthesiologist in the operating block... Due to premature birth, the genetic syndrome, epilepsy and other diseases, our son is under the care of 16 different outpatient clinics.
The diseases from which Oliwier suffers are incurable. All we can do is love him with all our heart, try our best to control his attacks, rehabilitate him intensively, be with him in suffering and do everything to ensure that he has the best possible care. If we manage to control the epilepsy, then with intensive rehabilitation, maybe one day our son will take the first step, say his first word... We ask for help in further fight of the bravest boy we know. Please, give us a chance while we still have hope!