BABY ALEX STORY
In mai 2009 s-a nascut Alexandru, fiul nostru, moment de mare bucurie si emotie pentru noi toti. A avut la nastere 3.150 kg si 49 cm fara nici un fel de simptome. Dupa icter a ramas cu galben la ochi, am intrebat doctorul si ne-a zis ca o sa treaca. Asta era la 2 luni. La 3 luni am constatat ca nu ne trece galbenul de la ochi si am inceput sa ne facem griji .
La testul de bilirubinie am aflat ca bilirubina totala este 10,3 iar directa 7,03 si indirecta 3.27 in conditiile in care cea totala ar trebui sa fie maxim 1,2.
A doua zi pe data de 9 septembrie 2009 am fost programati la un gastro-enterolog( Dr. Tano) de la Spitalul Joe DiMaggio, care dupa un consult scurt si revizuirea analizelor ne-a internat de urgenta in aceasi zi la acelasi spital datorita nivelului foarte ridicat al enzimelor(alk phos 1029 ) precum si timpul de coagulare foarte ridicat (PT -75 si PTT- 55)
Diagnosticul a fost imprecis se oscila intre colestaza neonatala cauzata de virusul CMV sau o malformatie congenitala ( atrezie de cai biliare procentual 50% una sau alta).
Dupa 2 saptamani am facut biopsie la ficat si au fost trimise felii la Dr. Dale C. Snover patolog la Fairview Southdale Hospital Edina, Minnesota recunoscut patolog. De la el rezultatele au venit tot neconcludente.
Un alt set de teste de biopsie a fost trimis Dr-lui Lesley Smith patolog la Jackson Memorial Hospital Miami.
In data de 30 septembrie 2009, (dupa 3 saptamani la un spital fara un diagnostic précis, am fost transferati la Jackson Memorial Hospital unde, dupa o saptamana de presupuneri , discutii , teste si experimente am fost convinsi de doctori sa facem operatie numita Cholangiograma prin care, ziceau doctorii ca, am avea sansa unei reconstructii a cailor biliare.
Dupa o asteptare de 5 ore in care ne agatam cu disperare de ultima noastra speranta ca am putea evita transplantul dr Neville ne-a comunicat ca Alexandru nu are format canalul biliar comun ceea ce face imposibila drenarea corespunzatoare a ficatului , ficatul avind un drenaj anormal prin canalele limfatice
In data de 12 octombrie 2009 am fost lasati acasa urmand sa fim pusi pe lista de transplant lucru care s-a si intamplat. Costurile unei operatii in Sua sunt foarte ridicate putand ajunge pana la suma de 500.000 usd asigurarea medicala acoperind o parte din costuri.
Intre timp am aflat despre posibilitatea realizarii transplantului de la donator in viata , am citit despre cazurile recente din Romania Sebastian si Ioana recent operata. Aceasta optiune este exclusa in Florida nemaifiind realizat un transplant de la donator in viata de 10 ani.
In perioada in care am stat in spital fara diagnostic précis am trimis e-mail-uri Dr-lor. Irinel Popescu, Lazar si Sokal din Bruxelles de la Saint Luc si peste tot unde am stiut, cu toate analizele sa aflam diagnosticul. In urma corespondentei avute cu centrul medical din Belgia, am fost acceptati pt o evaluare si un posibil transplantul dar cu plata in prealabil a sumei de 87.000 euro . Aceasta suma reprezinta interventiile chirurgicale donator si receptor , cele 3 luni de stricta observatie dupa interventie dar nu include costurile de sedere la un centru de cazari in incinta spitalului.
Tinand cont ca suma din Belgia este mult mai mica si avem mai mult sprijin acolo incercam sa facem tot posibilul pentru a-l opera pe Alexandru in Bruxelles.
On May , 2009 Alexander our son was born, time of joy and emotion for us. It was 3.150 kilograms at birth and 49 cm born without any symptoms. After jaundice he remained with yellow eyes, I asked the doctor and he said that this would pass. That was at 2 months. At 3 months of age we found out that the yellowish eye symptom was still on and we started to worry.
The bilirubin test we found that total bilirubin is 10.3 and 7.03 direct and 3.27 indirect in conditions where the total should be within 1.2.
The next day on September 9, 2009 I was scheduled for a gastro-enterology (Dr Tano) Hospital Joe DiMaggio, who after a brief consultation and review of the medical analyzes, Alexandru was admitted through the emergency room on the same day at the same hospital because of the level very high enzyme (ALK Phos 1029) and high clotting time (-75 PT and PTT-55)
The diagnosis was imprecise, varying from neonatal cholestasis caused by CMV virus to a congenital abnormality (percentage biliary atresia 50% one way or another).
After 2 more weeks another biopsy was performed on his liver and liver slices were sent to Dr. Dale C. Snover, pathologist at Fairview Southdale Hospital Edina, Minnesota recognized pathologist. The long awaited results were also all inconclusive.
Another set of the biopsy tests was sent to Dr. Lesley Smith's pathologist at Jackson Memorial Hospital Miami.
On September 30, 2009, (after 3 weeks in a hospital without an accurate diagnosis, we were was transferred to Jackson Memorial Hospital where, after a week of conjecture, discussion, experiments and tests I was convinced by the doctors to have a surgery called Cholangiograma on Alexandru by which, doctors said that I had a chance to horses biliary reconstruction.
After a five hours waiting in which we hold on to our last desperate hope that we can avoid the liver transplanted, Dr Neville told us that Alexander common bile duct hasn’t formed which makes impossible adequate drainage of the liver, and the liver has an abnormal drainage by the lymphatic channels.
On October 12, 2009 we were discharged from the hospital and Alexander had to be put on the transplant list, thing that happened. Costs of such of surgical procedure operations in the U.S. are very high amount that can reach up as much as to USED 500,000 with the health insurance covering some of the costs.
Meanwhile I found out about the opportunity of a transplant from a living donor. I read about recent cases of Romania and Ioana and Sebastian’s recent surgery. This option is excluded in Florida no longer made from a living donor transplant for 10 years now.
In the period in which we stayed in the hospital without accurate diagnosis I sent e-mail Dr. Irinel Popescu, Lazarus and Sokal at Saint Luc in Brussels and everywhere I knew, with all tests to find the diagnosis. After the correspondence that I had with the medical center in Belgium, I was accepted for evaluation and possible transplant but the sum of 87,000 euros has to be paid in advance. This amount represents the donor and recipient surgery, the 3 months of close observation after surgery but does not include the cost of stay at a resort inside the hospital.
Taking into account the amount of Belgium is much smaller and have more support there trying to do everything possible to work on Alexander in Brussels.