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Butman Borya, 3 years old

Date of birth: 27 November 2007.
Rostov-on-Don city.

Diagnosis: congenital heart disorder. Borya had his first surgery when he was only one week old. He had his second one when he was 6 months old. Now he needs one more, the final surgery. German clinic has the biggest success rate, but German medical services are too expensive for Borya’s parents. We call for urgent money raising, 33,900 euros (44,700 dollars), to save the child!

30 November 2010

The bill for Borya’s treatment has been increased by 7,000 euros, this is for heart catheterization that needs to be performed before the surgery. It will allow to see the problem from the inside and to choose the best way of disease correction. Also it will help to fix the narrowings if they are present.

From the letter of Borya’s mom:

The clinic sent another bill. They say that in the previous one they didn’t account for heart catheterization. Now total cost is 33,900 euros. I feel really embarrassed, but we do need that surgeon. I have talked to Dr. Lyubomudrov, and he insists that we go with Dr. Kharchko from Saint-Augustin.

We are not passively waiting here, we write to German charity funds, to our friends and everyone we know, to help collect the money for Borya and other children.

26 November 2010

Borya has congenital heart disorder, he had two surgeries already. They gave him the opportunity to survive for 3 years, but now it is time to perform the final surgery that will save his life. Fontan operation is not something unheard of in our country. It is performed on a regular basis in several cardiology centers. Yet the results of this procedure are still drastically different from what european clinics have achieved. Surgeons’ skills are not the matter, the matter is the equipment that our clinics miss, and the general approach to the procedure. Borya has much bigger chance of surviving if the procedure is done in one of the German clinics. The doctor who operated Borya a week after he was born and then again 6 months later recommended German cardiology center Saint-Augustin. It would cost 26,400 euros (35,000 dollars). Borya’s family very much needs your help in saving their son!

From the letter of Borya’s mom, Elena:

We were all very excited when I was expecting our Borya. His older sister Yulya had asked for a little brother since she was 6. When she found out that I was pregnant she started caring for me, forgot about her summer plans and was very happy. I wanted to experience that feeling again, when the whole world changes because there is a new life growing inside of you. I wanted to enjoy every single day of my pregnancy.

I was 34 years old and didn’t quite qualify for an «old» mom who’d have problems with her pregnancy because of age. I did all the tests anyways just to make sure. They all came out normal, everything was fine. As an experienced mother I went to the ob/gyn regularly and took all the pregnancy surprises very well, I worked and was extremely happy. At 15 weeks our Borya waved his hand at us from the ultrasound screen, at 24 weeks the ultrasound confirmed that the boy is developing well and everything is going alright. My job started being difficult, but I was about to go on maternity leave.

The ultrasound at 32 weeks was the last day of our happy lives and the first day of this nightmare. The doctor told the nurse to write down the following: «CHD, tricuspid atresia is in question». I tried to figure out what all that meant, while the doctor gave me the information on the cardiology center I needed to go to and sent me out. She was probably scared I’d start crying in her office.

The very next morning I was in the cardiology center. I thought there was a mistake. I hoped the doctor would take a closer look and tell me that everything’s fine. The doctor did take a closer look for about 20 minutes and then told me to wait outside. After a while she came out and explained to me that my baby was unviable, that he wouldn’t survive and if he would, he’d be physically and mentally impaired. Then she noted: «You already have one child. Are you going to have this one anyways?»

After that everything was like a dream, a nightmare. Next day my husband took me to Krasnodar. Those doctors had a different approach. The doctor looked at my son on the screen for two hours. Then she took me to a separate room, drew a picture of my son’s heart and showed me what was wrong with it. We found out that our son has an underdeveloped right half of the heart, transposition of the great arteries and a hypoplasy... and many other things! We learned he’d need at least 3 surgeries, that the first one would be the most dangerous and difficult. It is impossible to tell whether there is hypoplasy of aorta because of late pregnancy, and that would be very important during the first minutes of my son’s life. My completely pale husband was asking where we could go for better chances of our son’s survival. The answer was to St. Petersburg, to Dr. Lyubomudrov. Other clinics couldn’t give us any guarantee. That day I saw my husband cry for the first time in my life.

In a couple of days my husband found out the phone number and email of the Saint-Petersburg City Children’s Hospital #1. Dr. Lyubomudrov answered right away and told us to come. Dr. Tsytko met us there and did the ultrasound again. We had a long talk in his office. It was so different from the talk that we had in our city Rostov! He said that the disorder was critical, admitted that there weren’t many cases like this, that chances are minimal. But he said they’d do anything for our son to live if we are ready to fight for him. Oh my God! I was so relieved after those words!

Then we were told that I need to give birth in St. Petersburg with the team of cardiac intensivists from the clinic, because Borya would be born unconscious, wouldn’t breathe and might need a surgery in the first minutes of his life. We went to the closest maternity hospital, arranged for the birthing process there and came back home to wait.

I was 8 months pregnant. I couldn’t tell any of those news to my mother, only my dad and my daughter knew. I asked them for help. My daughter cried, but she agreed to live with my parents while I would be in St. Petersburg. I asked my doctors for a letter saying that I was only 33 weeks pregnant, because you’re only allowed on the plane if you’re less than 34 weeks pregnant.

On a Sunday morning, one week before the due date, I realized that the doctors were wrong with the date. My son definitely decided to come out, but the doctors had planned a c-section. That day there were no direct flights to St. Petersburg, we had to go through Moscow. Natalia Aleksandrovna from the St. Petersburg maternity hospital asked me to not give birth in the first plane. It was ok to give birth in the second one, they would bring the emergency car right to the takeoff runway and would take me to the hospital on time.

It was all like a dream again, but it was a good dream this time! Borya stopped kicking and scaring all the flight attendants, he became quiet for 4,5 hours. In Moscow we were able to get on an earlier flight and left within 15 minutes! St. Petersburg greeted us with a little bit of snow and the emergency car.

They expected us in the maternity hospital. They recognized my last name fright away, and sent me to the birthing room, just in case. But my son behaved well, and waited another week. Then they did a c-section and my son was born! He was fully conscious, and screamed loudly. He was 53 cm long and weighed 4,150 grams. He wasn’t blue either! The doctor couldn’t believe her eyes and together we hoped for a mistake in ultrasound. Emergency car took my boy to the Children’s Hospital 30 minutes after he was born. There they confirmed all the diagnoses, his aorta could break any minute. But my boy could breathe by himself, he could eat and catch nurses’ fingers with his tiny hands. One week later I came to the hospital and was able to see my son before the surgery. My husband came too and we waited for 4,5 hours and prayed for one thing: we needed a miracle!

Then Dr. Lyubomudrov came out, he was very tired. Dr. Tsytko came to talk to us and told us we’d be able to see our son in 30 minutes. He was so tiny, surrounded with all those wires, but everyone said he was an athlete . He spent the next 7 days in intensive care, then 7 days in a recovery ward. And then we could go home! After 6 months he had another surgery. Everything went easier and faster than the first time. Doctors and nurses were very proud of Borya, he was doing very well. He started walking in the hospital, and also said his first word there: «daddy». He had his first tooth in the hospital as well.

In Rostov’s hospital they treat us nicely now. Borya is a unique patient. Once a year american doctors visit our hospital to teach our surgeons, within a program «From Heart to Heart». They always ask to bring Borya in, and local doctors are very proud of him.

Today Borya grows, runs and plays just like normal children. He doesn’t remember almost anything from his hospital life, he is only scared of the inhalator mask, because it’s just like in the intensive care room. Although they tell me a 3-yea-old can’t remember what happened when he was 6 months old. But Borya is a unique child, he is curious and kind, active and very considerate. He likes to play with other kids and will give all his toys to anyone who asks. He wants to try everything that’s out there. He is absolutely charmed by the boys playing football, he offers them his own little ball, and they let him bring the one that got away and wait while he finds it and brings it back. No one knows about his disease.

The only problem is that his fingers and lips get blue more often and old ladies often tell me that my boy must be very cold. He also gets upset more often and asks to carry him around more and more. He just tries to save his energy. It is time to do the third surgery, Fontan procedure.

It is very risky to do that surgery in Russia. It is not unique, I do trust the doctors in Children’s Hospital in St. Petersburg, they are the best doctors. It’s the equipment of the clinic that is the problem. The equipment is needed for the best possible recovery of such complicated cases like ours.

We called Dr. Lyubomudrov and he insisted we do the surgery in Germany. The Asclepius Clinic (Saint-Augustin) near Keln has agreed to do it. The surgeon Dr. Victor Khrachko guarantees the successful surgery.

Borya will be 3 years old on September 27. I still don’t work, only my husband does. The bill from Saint-Augustin is 26,400 euros (35,000 dollars), we’ll also need money for the road and translator’s help. We just can’t collect all the money by ourselves. Hospitalization is January 31 of 2011. We ask you to help our son. We love him so much, we so want him to live!

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