Russian parents fight stigma of their 3-year-old daughter born with half a face

People say a parent's love for their child is unconditional.

The heartwarming story of a Siberian couple, Yury and Elena Shpengler, is living proof of that.

Three years ago, 46-year-old Elena gave birth to their daughter Darina prematurely at seven months despite having a smooth pregnancy up until that point.

Recalling moments after the birth, Elena said in The Siberian Times report: "I soon realised something was wrong. The doctors were worried and started calling somewhere."

"The baby was wrapped and I did not see her properly. A bit later I begged them to show me my daughter."

At previous visits with her obstetrician, ultrasound scans seemed normal and did not raise any red flags so Elena fainted from shock upon setting sight on her infant.

People have told us to put a mask on her but he replied: 'if you don't want, don't look at her - but we accept her the way she is'.

Elena Shpengler, mother of 3-year-old Darina

Darina was born with a serious genetic failure with eight mutations in her body, and this medical condition has left her deformed with no lips or chin so the lower half of her face is perpetually covered in blood.

The couple were told that her condition was not due to Elena's pregnancy in her later years as "such a child can be born at any age".

Subsequently, Elena recounted how doctors suggested she leave the baby in the hospital, a suggestion she promptly rejected for it would mean that Darina would disappear into Russia's grim orphanage system, reported Daily Mail.

At the time of his daughter's birth, Yury was recovering from an accident at another hospital after narrowly averting a car crash.

But when he finally got to meet his little girl, the love he had for her was unquestionable.

"She is ours, our girl," he said in The Siberian Times report.

Since then, the couple has heeded medical advice to seek treatment from specialists in Moscow, the Russian capital.

Now, Darina is on a long journey to rebuild her face and doctors have told her parents that she will have to face major surgery every two years.

Orest Topolnitsky, Darina's oral surgeon who's involved in the operation to repair her face, condemned the heartless comments people have made of the child.

"This girl is now in our hospital. It is a very rare case. Many charity funds refused to help saying she will die soon anyway.

"We know that this family has problems with relatives who have not loved this girl from the very beginning. Some people have no hearts, it is so shocking," said the surgeon in The Siberian Times report.

The family has faced a slew of criticism from their community, and have been forced to move in a bid to avoid some family and former friends.

The prejudice faced by the little girl has been so severe that she was denied access to a local kindergarten for fear that she may frighten other children.

We know that this family has problems with relatives who have not loved this girl from the very beginning. Some people have no hearts, it is so shocking.

Orest Topolnitsky, Darina's oral surgeon

Instead, once a week, social services send two teachers to visit Darina so that she can have basic education.

Although being shunned has made life harder for the family, her resilient parents are determined not to keep their child hidden from the world.

"We do not hide Darina from people. We take her everywhere with us."

"People have told us to put a mask on her but he replied: 'if you don't want, don't look at her - but we accept her the way she is'," said Elena in the report as she spoke about her husband.

However, Darina has been accepted by others in Moscow for the way she is. Elena said her daughter has friends there and "one woman, Valentina Alexandrovna, brought toys for Darina and asked if she can be our grandmother because she does not have her own grandchildren."

There is still kindness in this world.

ljoey@sph.com.sg