Our story…

I will start with the beginning when our eldest son, Robert, who though suffering from a less severe disease than our youngest son, on long-term the effects can be as serious.

Robert

After 2 ½ years of waiting  our first son was born, Robert. Between the fifth and sixth months problems began appearing with constipation and visits to doctors. All in vain because when Robert was close to one year old we got to the emergency room and there after a series of mistakes and misdiagnosis we were sent to intensive therapy for blood transfusion, but packed with high-risk of losing the baby. He was hospitalized for 10 days and here we heard for the first time about the diagnosis of congenital megacolon(Hirschsprung’s disease) and subsequently toxic form.

 Megacolon is abnormal massive dilation of the colon. Congenital megacolon (Hirschsprung’s disease)  is caused by the absence of autonomic ganglia in the smooth muscle wall of the colon. Toxic megacolon is a grave complication of ulcerative colitis and may cause perforation of the colon, septicemia. Colonoscopy and surgery are the usual treatments for toxic and congenital megacolon. ut Therefore with the massive dilation immediately appears the severe constipation. Besides all this he has intolerance to milk as a manifestation of the disease. The biopsy and the imaging did not confirmed 100% the disease therefore the option was to not go for a surgery for now, but to stall up to 3 years and see how the child develops. We accepted the situation at that time, especially that the risks of surgery were quite large, namely the anus against nature and the chance to to lose the conscience temporarily or permanently. In addition,  the laparoscopic surgery can not be done here also they don’t do a extemporaneous examination of the area to be cut and everything is done by eye.
Then we decided to go with Robert in Hungary for more tests, but… We went also to Bucharest to a physician experienced in this disease, he came from Germany, but all to no avail certain. The boy is now 1 year and 10 months and it's getting harder and harder to stall. In most mornings everything is normal but by the evening time his belly will be distended. There are days when he can not pass stool at all and days when is a lot less than normal and needs stimulation with drugs and/ or enema. From time to time we have to go to the hospital for high enemas to clean the entire large intestine. Between Christmas and New Year because of a respiratory infection and constipation Robert got again at the Emergency Room… he was crying, trembling, having a hard belly, fever and his lips color turned to a purple one. We got very scared given his similar condition to that of April 2012 prior to reaching the Intensive Treatment Unit.
It's more than hard to see him like this. It is difficult with his nutrition too, given his milk allergy.


Raul

After 7 months since Robert came into this world my wife got pregnant again, and in that moment we had no idea what was waiting for us. With routine checks during the pregnancy and a C-section at the end Raul was born. After 2 months he had a vaccination schedule with our family doctor and when she saw him she sent us right to the Emergency Room. In just a few days, he had a swollen abdomen, condition reached quite suddenly. In the ER we had to be very insistent and to strife a little bit, then they performed a ultrasonography for Raul and we end up being hospitalized with diagnosis of hepatosplenomegaly. In the first week of hospitalization his condition got worst, the liver has increased 4 times, the child strongly swollen from abdomen down and we thought of losing him. We spent some time in the Intensive Treatment Unit where our son underwent for a liver biopsy.

Three weeks later the diagnosis arrived, namely neuroblatoma metastases to the liver. Our dismay was based on what the doctors said, they did not know if they will have enough time to investigate more, but still gave him chances. Above all the Cytomegalovirus infection complicated the things even more and increased thne risks. It seems that the virus was transmitted through the placenta during pregnancy somewhere in the second or third trimester. My wife got the virus from the hospital where she and Robert were hospitalized for a week.
Basically neuroblatoma is a tumor that originates in one of the adrenal glands, in Raul’s case the tumor affected the right adrenal gland with dissemination to liver. Then based on nb2004 protocol the chemotherapy started. After three courses of chemotherapy liver volume has decreased, but still seems that the metastases have increased… now we started the 5th course. It is the most powerful cure that can only be given after the baby is 6 months old. Already Raul has his hands and his face swollen and hardly resists. The risks are so high and we are blown.
Depending on the evolution of the disease, according to the protocol, we can plan for an adrenal tumor removal surgery in a few months from now. The surgery would be performed at Tübingen University Clinic, Germany. If we can get the needed European form for that, the insurance company in Romania will bear some of the costs but not entirely. We have to get around somehow. We found out from others who were there for the same type of surgery, that the costs will be around 50,000 Euros. We'll find out for sure in the near future.

I am entirely disappointed by Romanian medical system. Many times we could have lost our children because of the negligence, carelessness, lack of equipment and professionalism. But I met sensitive people and special people in the system, but few, too few... I would like to give special thanks for their professionalism, compassion and warmth to the following doctors: prof. Boia, dr. Boeriu, prof Simedrea, dr. Stanciulescu Corina, dr. Cucui Cozma Cosmina.