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Fighting stigma: parents of girl born with half a face tell of their battle to help her

By The Siberian Times reporter
06 June 2017

When Darina was born 3 years ago without lips and a chin, her mother lost consciousness from shock, and soon her family disowned the child.

When Darina was born as a late child, Elena admits she suffered an unbearable shock following a smooth pregnancy that suddenly resulted in a birth at 7 months. Picture: Victor Guseinov

Now mother Elena Shpengler, 46, is fighting back against the prejudice faced by her infant daughter, as doctors begin the slow process to rebuild her face. 

'She does not have lips. Her mouth is constantly open and all the time in blood,' said the loving mother from Krasnoyarsk region.

'Only my sister supported me, all other relatives just stopped any communication with us.

'My brothers, their children, the mother of my husband - nobody wanted to accept Darina. 

'They just did not notice her since she was born. But we do not  Darina from people. We take her everywhere with us. 

'Can you imagine, we go into the shop, see our own relatives, and they immediately go out, asking their children not to look at us.'

Fighting stigma: parents of girl born with half a face tell of their battle to help her
Darina with parents. Picture: Victor Guseinov


Worse, she said, their relatives told police they had damaged Darina's mouth themselves. 

'I got a call from the police,' she said. 'They demanded explanations. Our surgeons were shocked to hear all this.

'Of course it will be sorted very soon but we are so nervous, and we need all our powers to help Darina. We need to raise and support her, she has a lot to overcome.'

When Darina was born as a late child, Elena admits she suffered an unbearable shock following a smooth pregnancy that suddenly resulted in a birth at 7 months.

Nothing abnormal had shown up on scans. 

Maternity hospital staff urged her to give up the baby, who would then be sent to grim orphanages. 

'I soon realised that something was wrong,' she recalls of the moments after she gave birth. '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 to show me my daughter. 

'The nurse looked at me and asked - 'Are you ready to see it? She is in an incubator.'

'I went close and looked - and saw this wide open mouth! 

'I fell into darkness and lost consciousness. I was taken to intensive care where the doctors suggested I leave the baby in the hospital. But I strongly refused.'

Fighting stigma: parents of girl born with half a face tell of their battle to help her
When Darina was born as a late child, Elena admits she suffered an unbearable shock following a smooth pregnancy that suddenly resulted in a birth at 7 months. Picture: Victor Guseinov


At the time her husband Yury was in another hospital after narrowly averting death in a  car crash. 

'As soon as he felt better, he rushed to see us. His face did not change when he saw Darina. 'She is ours, our girl', he insisted.

'The truth is this trouble has only brought us together.'

But it has been agony for Elena watching her child suffer pain, and feeling a lack of support in raising the child, and helping her. 

'The doctors did not help me to take of my child,' she said. 

'It is so horrible when you see a crippled and crying baby and you are unable to help. 

'Darina was crying day and night, and I was crying too. I understood that she was in pain.

'She does not have lips. Her mouth was constantly open and all the time in blood. 

'I was buying an apricot oil, boiled chamomile flowers and made sort of herbal applications. 

'I trying to listen to my instincts. Of course, I could not breast feed her, so I was pumping for hours.' 

Fighting stigma: parents of girl born with half a face tell of their battle to help her
Surgeon Orest Topolnitsky. Picture: Victor Guseinov


Finally she was urged to seek assistance from medical experts in Moscow. 

'Darina has a serious genetic failure, with 8 mutations in her body,' said Elena. 'Her mouth was constantly bleeding. She still can't eat solids, only liquid food. 

'We were told that it was not due to our ages. Such a child can be born at any age.'

Now Darina is on a long, slow road to recover her face. 

For Elena, there is huge pain over the reaction of her relatives. 

'We did not want such a war with relatives and decided to go away from our village of Volny,' she said.

'Only our adult children and their families support us and love Darina. 

'They confessed that at first it was hard to look at her but now they got used to it and support us.

'My husband Yury does not feel ashamed either.

'He takes Darina everywhere. People 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.'

'Darina was not allowed to join a kindergarten.

'We were told that the other children would be scared. 

'Instead, the social centre sent two teachers to come to Darina once a week. 

'She is such a sociable girl. We have bought lots of toys for her but nothing can replace friends.

'She likes to sing. She likes put on clothes and look at herself in the mirror. She loves building blocks and construction sets. 

'It is rather hard for her, because only two fingers on each hand are active enough.

'She does not have joints in other fingers and we can't do anything about it.'

Fighting stigma: parents of girl born with half a face tell of their battle to help her
'Darina has a serious genetic failure, with 8 mutations in her body,' said Elena. Picture: Victor Guseinov


Elena has given up work to look after Darina. 

The couple are not wealthy but they raised the money to bring their daughter to Moscow for medical treatment. 

'My daughter has friends here. One old Muscovite, he is 80, got to know about her and calls himself her admirer. He comes to see her every week. 

'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. 

'Of course we agreed.'

This kindness in the capital city means the world to Elena. Darina is recovering after the first successful surgery. 

'Doctors sewed her mouth and made it smaller. Now they plan to make lips for her and to grow bones and muscles for her chin.'

Yet the girl will face surgery every two years.  

Surgeon Orest Topolnitsky, who operated on Darina, said: 'This girl is now in our hospital. It is a very rare case.

'Many charity funds refused to help saying that she would die soon anyway. 

'We took a risk and operated her as a part of free governmental insurance. 

'But the girl needs more surgeries. 

'We have done the first and the most difficult one.

'It was risky because the child is very small, any bleeding is a threat for her. 

'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.'

Fighting stigma: parents of girl born with half a face tell of their battle to help her
Krasnoyarsk. Picture: Slava Stepanov 


What explains this attitude from relatives? 

One woman who commented to Komsomolskaya PRavda newspaper may have put her finger on it. 

The relatives live in a small village and know their children will probably marry locally in the future. 

'They must prove that there was no pathology in their family, otherwise their kids have no chances in a small community,' it was claimed.

'So they have to prove that those parents have beaten and hurt the girl themselves, and that mother nature has nothing to do with it.'

We set up a funding page - grateful if you can share the link: https://www.gofundme.com/helpingDarina

Thank you,

All the best,

Team The Siberian Times

Comments (34)

Can someone give me a way to contact them? I would like to help them.
Miguel Angel, Barcelona
07/06/2017 20:38
7
0
This story says it all, rejection by close relatives, wider social prejudice all because of this girl's facial disfigurement and other disabilities due to her condition. She 'dares' to look different.......... so what!,,,,,,,Very young children can be accepting, and, i accept at times cruel, but we are all born without prejudice which we learn from adults. I am somewhat unimpressed by the uncharitable charities, social isolation experienced by the family and attitude of the educational authorities in this regard, which will no doubt impact on her development as she gets older. I hope she gets all the medical help she can............ Recent medical advances in 3D facial surgery may help reconstruct her face and provide her with a jaw, and other medical interventions assist with improving her quality of life, but i fear this may involve considerable financial cost to achieve if not available in Russia. I believe the more difficult task is to change local attitudes though to her condition.

It is heart warming she has admirers in far away Moscow, and i think, quite a few Siberian Times readers around the world. i wish Darina and her parents well for the future. The future will no doubt be difficult, but she deserves all the help she can get.

A thought provoking piece of good journalism.
Gerald Carson, Belfast, Northern Ireland
07/06/2017 18:41
5
0

You are a Angel. I see a beautiful little girl. I hope the surgeries and Doctors help you become the beautifully little girl
That i see you are.
May God bless you.
Tony Davis , Virginia Beach United States
07/06/2017 07:29
4
0
such a heart warming story darina has great parents that truly love there daughter
kent dobbins, alaska usa
07/06/2017 07:07
6
0

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