My precious daughter was born on January 15, 2007, 3 weeks earlier than necessary, in a maternity hospital in Sochi. Her weight was 2.75 kg, and her height was 53 cm. My baby was rated 7/8 on the Apgar scale. Everything was good: the joy of receiving numerous congratulations from relatives and friends; her overly happy dad who miraculously and pleadingly managed to get into the maternity ward just to see his newly-born, pretty amazing daughter – it was absolute happiness …
The following morning of January 16 threw us into horror… In the morning during the medical examination, the doctor was long listening to her through a stethoscope, carefully examining. Then the doctor took the socks off my daughter, and I saw that her feet were blue. Without saying anything to me, the doctor quickly grabbed my daughter and immediately rushed to the emergency room. I still did not understand what was happening, what was wrong… Leaving the emergency room, the doctor said “wait here, you will be called.” Three hours later, a nurse came out and called me to the emergency room, where I saw my little daughter, all in wires with a dropper on her head. The doctor came up to me and explained that he was a pediatric cardiologist, and that my daughter had a very rare heart defect known as “Ebstein’s anomaly” (ASD or atrial septal defect), plus combined pulmonary valve stenosis. Like many other parents in such situations, we were completely shocked and could not understand how it happened that two healthy, leading sober, drug-free lifestyle parents could get a dangerously sick child…. We went to the Internet to find information about this heart disease, and our findings seriously scared us.
My daughter spent 5 days in the emergency room, and 16 days – in the children’s unit of newborns. When my daughter was just three months old, we went to the regional Thoracic Surgery Center, where our diagnosis was confirmed. We were warned that the baby would have to undergo a series of surgeries, that in our case, this heart defect did not involve a definitive repair, that surgical interfere would only be palliative… Not fully believing that this all was happening to us and with our new-born baby, we decided to fly to Moscow to Bakoulev Center for Cardiovascular Surgery. In the center, the daughter was examined, after which we were told to go home and just observe the development of the child. Her stenosis was progressing, and at the age of one year, my daughter began to turn blue and breathe heavily, and she needed to sleep more. After the New Year holidays, during a regular monthly examination, our cardiologist expressed his serious concern about the state of our little Dominica.
Seriously trembling for our daughter’s life, we left for the regional Thoracic Surgery Center, where on January 29, 2008, the daughter underwent surgery to apply a systemic-pulmonary anastomosis on the left with GORE-TEX® Stretch prosthesis. My daughter recovered from anesthesia quickly and easily, in the morning of January 30, we were transferred to the standard ward, and one week later we were already at home.
Monthly follow-up visits to a pediatric cardiologist became an integral part of our life … When the daughter was two years old, our doctor said that he did not like her health data, and it was necessary to determine the further strategy of surgical treatment. We were advised to go to the Yerevan Cardiology Center “Nork-Marash” and apply to the cardiac surgeon Hrayr Hovakimyan, who generally came to Yerevan from Cleveland to perform unique surgical operations.
We sent the documents of our daughter to Hrayr Sarkisovich, and the next day we received a reply “Please come to the Cardiology Center, the child needs urgent surgical treatment.” We sold the building lot with a half-constructed house and borrowed the missing money to fly to Yerevan. On May 9, we arrived at the Cardiology Center. They knew that we would come and immediately proceeded with taking all necessary medical tests, Holter monitoring, and putting my daughter in an IV. On May 14, the doctors carried out a probing, on May 15 we were explained that the daughter’s right ventricle was small and the tricuspid valve was seriously hypoplastic (undeveloped), but the doctors would try to execute a sesqui-ventricular correction.
The surgery was scheduled for May 18. My daughter was taken for the operation in the second turn. The surgery lasted for a very long time. Only nearly at midnight, the surgeons came to us to parent’s room and told about the surgery. We were told that the surgeons failed to conduct a sesqui-ventricular correction so they decided to conduct Glenn procedure instead. My daughter spent 7 days in the emergency room. When we were discharged from the Center, Hrayr Sarkisovich talked to us, inspiring for a sesqui-ventricular correction.
We agreed that we would report the slightest changes in the state of her heart to the Cardiac Center. In January, while undergoing the scheduled examination, our cardiologist advised us to fly to the Cardiac Center for a checkup. In March, we flew to “Nork-Marash”, where Dominica underwent an executive checkup with cardiac catheterization. Since Hrayr Hovakimyan was absent at the Center at that time, we agreed that we would receive the strategy of further surgical treatment by email. The email staggered us – the Fontan procedure!!!
We began to look for other cardiac centers. We were advised to contact the German Heart Center in Berlin, precisely Dr. S. B. Ovroutski. We sent him all our documents and the results of examinations made at the Yerevan Cardiac center. Having looked at all our health surveys, Stanislav Borisovich said that in our particular case, only a sesqui-ventricular correction with preservation of the tricuspid and pulmonary valves could help.
We were very happy to hear that it was possible to correct the heart defect while maintaining both valves without the Fontan procedure!! The right ventricle was working and the tricuspid valve was also working despite hypoplasia. This was very good news because there was a real opportunity to restore and reconstruct the valves, enabling the heart to properly perform its functions in the body. The Fontan procedure is a palliative, not radical surgery. What is more, after the Fontan surgery, the next stage of surgical treatment is only a heart transplant.
In our case, it is really possible to do without the Fontan procedure, saying without a heart transplant in the future, it’s so great!!! We asked about the cost of such surgery. We bow down before the World Vita Foundation and are endlessly grateful for its help … This Foundation helped us to collect the necessary money, so we could fly to Berlin…
At the clinic, the daughter underwent a complete examination. During probing, the doctors negated stenosis of the pulmonary artery (the stenosis gradient was at the peak), thus dramatically improving the state of Dominica. The saturation increased from 88 to 94. It was also expected that during the intended load, the right ventricle will reach the appropriate volume required for performing correction…. But next, we were sent home, for half a year…. Why exactly half a year!? Because the stenized vessel, unfortunately, usually gets stenized again, but this time should be enough for Dominica to grow up, strengthen, and gain the necessary weight…
Stanislav Borisovich offered us the following strategy of treatment: to remove the atrial septal defect, to perform the plastic surgery of the tricuspid valve. But he also mentioned that if the parameters of her heart are insufficient, then the Fontan procedure will be unavoidable… But we have high hopes and believe that we will succeed and our cardiac surgeons will help us!!!! Once every six months, we sent the results of Dominica’s medical checkups to Berlin, and finally, we were invited for an examination to choose a suitable surgical treatment for Dominica in Berlin.
In December 2019, Dominica had yet another checkup with probing and MRI, which was sponsored by the Dobryaki Foundation … The doctors did not like the results … Under physical activity, the oxygen level dropped to 55 -58%, which is extremely low. It is very difficult to lead a normal life with such parameters: you have to sit and lie just all the time, which ultimately affects only the quality of life, but all internal organs and tissues … The verdict of doctors was like a thunderbolt from a clear sky: Dominica becomes a candidate for the Fontan surgery. But there’s one very BIG hitch: Dominica has a tendency to liver swelling, and the Fontan surgery may badly affect her already weak health … What shall we do …
During a one-to-one discussion, the doctor recommended us to contact the Boston Center, where the specialists have enormous experience and practice to effectively treat Dominica’s heart defect … Without thinking twice, we wrote to Boston. For 4 weeks, we were waiting for the reply and decision … The received verdict made us happy … YES, A radical correction of the defect is possible, i.e. I mean, Dominica will be like a healthy child, everything will be all right, healthy, and functioning as needed … ..But the bill is sooooo huge: 141,168 US dollars…
To say that I did not ever hold such big money in my hands would be an understatement. I have seen such crazy money only in movies. I have nowhere to take such a huge sum. But doing without Fontan surgery when there is a huge opportunity to make a radical correction of the defect is stupid … Now my daughter and I are in the finishing straight in the fight for her health, future, life. In this 13-year struggle, we are left alone, our dad could not stand this trial and vanish, it is just a little more difficult for men to endure problems…
I absolutely have nothing else to sell. Everything that I could sell, everything that I saved up, everything was previously spent on numerous surgeries, treatment, and checkups of my daughter … Now we live in my mother’s shared apartment, which is our only property and home, but why to hide the truth: this tiny apartment is not even ours, it belongs to my mother and I can’t sell it, and it’s not worth the money…
I am 42 years old, Dominica is my single and long-awaited child, there are just two of us, and that’s all… Help us, I beg you not to leave us at the end of our long, hard road to recovery .. I know and understand that there are many children in the Foundation requiring even bigger sums of money for treatment. Since Dominica is stable now, we have time and we can wait for our turn to get the collected money … I pray you to accept us …, The “Help Save A Life” Foundation is already helping us to collect 50% of the required sum …
Dominica is a very good girl, she dreams of roller-skating, but due to labored breathing, she can only sit on a bench and watch others to skate, to enjoy this life… She loves drawing, and she is a brilliant pupil: this year, she received a diploma from the Ministry of Education and Science for her excellent achievements in studying … She wants to become a veterinarian very much to treat all homeless cats and dogs. To my question “Daughter, what else are you dreaming of, what else do you want ???” She replies “I really want to get well, and when I grow up, I will become a veterinarian …
