Daniil, two years old, from Tosno in Leningrad Oblast, Russia

Letter from Daniil's father:

Good day,

I write this letter as a plea for help for our little son Daniil, who was born with a severe heart defect. Now Daniil is two and a half years old, he is a very active and curious boy, even though he already has undergone surgery six times in his short life.

The current diagnosis is the following: "Dextrocardia. An unbalanced atrioventricular septal defect. A double outlet right ventricle. A patent ductus arteriosus."

We knew from the twentieth week of pregnency that our child would be born with a heart disease. Another ultrasound examination at the Municipal Hospital No. 1 confirmed this diagnosis. The birth took place at the Federal Almazov North-West Medical Research Centre, where they immediately took our son away to prepare him for surgery. At the age of nine days he underwent his first procedure. The baby spent three weeks in intensive care. Due to post-operative complications – there was a large amount of liquid in his left lung – he again needed surgery. Daniil was discharged from hospital when he was two and a half months old.

From that moment on we were very happy! Finally Daniil was with his mommy and daddy, he could bathe or go for a walk outside like other children! He is a quiet, friendly and very modest little boy. Still there were problems: he would eat very little, gained little weight and lagged behind in his developement, we constantly took him to physiotherapy, constantly got him examined by neurologists.

A bidirectional Glenn procedure was planned for when he would be nine months old. But due to the unfavorable results of an ultrasound examination the procedure was postponed twice, when he was one and a half years old the doctors decided to perform the surgery.

During this time our second child was born, our daughter Maria, which was the reason why Daniil was accompanied to the hospital by his dad. 

Complications appeared after the surgery, the infant could not breathe on his own anymore. Two weeks later he was operated on again. This surgery did not bring any improvements, either. A month and a half later the bidirectional Glenn procedure was reversed during a risky intervention. After that, Daniil's condition improved. We spent three and a half months at the hospital, during which Daniil could not breathe on his own for a period of two and a half months! And all for nothing!

The Russian doctors told us that there was nothing left they could do to help us and that we should look up clinics in other countries. We reached out to the Deutsches Herzzentrum Berlin (German Heart Centre Berlin). Daniil's surgery on May 3rd was a success.

Because of the specific features of his body it was impossible for the doctors to carry out all they had scheduled. A bidirectional Glenn procedure could not be performed, even though this kind of procedure is one that can usually be implemented on younger children. Doctor Ovroutski, who works at the Heart Center Berlin, ordered an examination of Daniil's heart and a subsequent surgery for November 2016. We already received a bill totaling 37,680 €. That is an unaffordable sum for a low-income family. We are an avarage family with two children and we just do not have that kind of money...

We turn to you hoping that you will help us and that you will give our little boy the chance to get better!

Sincerely,

on behalf of the whole family

Daniil's father

If you would like to help little Daniil, contact us by email at the following adress: info@grosses-herz-fuer-kleine.de