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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:

Thank you,

All the best,

Team The Siberian Times

Comments (34)

My best wishes to this wonderful family i am sûre that little girl will look different in the next tirée years
liguori Leclerc, TROIS-RiViÉRES, Canada
11/06/2017 01:21
What a sad/beautiful story I hope you will find the help that is out there simewhere in Russia Plastic surgery and pain but surely in the end she will be better guarded from infection of an opening to her uncovered wound You are so loving that I feel sure it will happen I love your beautiful country and hope again to visit though I have been on 3 beautiful trips there (right through your city on the Trans Suberian train from Mosciw to Vladivostok (a gift to me on my 80th birthday) All my good wishes go with you both and your beautiful daughter
Patricis Gothsrd, Laguna woods CA USA
10/06/2017 23:32
Are there any ways to rebuild her face ? Stem cells ???
Ray Tsang, Hong Kong
10/06/2017 22:00
Dear all,
So many thanks for your words of support and offers of help to little Darina and her family. We set up a funding page for them, grateful if you can share the link.
All the best,
team The Siberian Times
The Siberian Times , Siberia
10/06/2017 01:32
I feel for this family and I want to help as well . I am sure there is a way out of this hardship on a collective level. Keep in mind there are breakthroughs in facial reconstructive procedures all the time. Please keep the readership up to date on this evolving situation.

All the best .
Valerie Simanovic, Ontario Canada
09/06/2017 23:19
Dear all,

Sincere thank you for your kind words of support for Darina and her family.

We have been in touch with Darina's mother who was overwhelmed to hear about your response to their story.

She asked to pass her heartfelt gratitude back to each and every one of you.

Darina's mother Russian bank account only accepts payments in roubles from within Russia.

She doesn't have a PayPal account, or a bank account that would accept payments from abroad.

Now... we realise this is a very expensive option, and we are looking into other ways of tranferring money, but IF you feel this works for you, Western Union payments can be made to Elena Ivanovna Shpengler (Елена Ивановна Шпенглер), Russia, and copies of payment slips will have to be sent to our email so that we can pass them to Elena.

We know this is like the longest route possible, and checking out ways of setting Darina's fund on either of crowdfunding platforms.
The Siberian Times,
09/06/2017 16:13
I already sent a message to asking for a giving page...
Miguel Angel, Barcelona
09/06/2017 14:57
Every child deserves to feel loved and protected by family members. Darina has the most wonderful patents beside her for any challenges she will face in the future. It is so unfortunate that Darina and her parents don't have the support from some of those closest to them; for those who have turned their back on this family, remember your life can change in a heartbeat, through a stroke or disfigurement of some kind, how would you feel if those closest to you turned their back on you for being different? All the best for what ever the future holds for Darina and her family.
Kay Bennett, New Zealand
09/06/2017 12:39
What a lovely little girl, she seems very brave. Please set up a just giving page I don't have much but I would like to give something to help this family. Because of the internet there are hundreds of thousands of people who see this story who want to give a little something and together that money could make a big difference to this family. So I am asking you the Siberian times to set up a just giving page for this little girl. Medicine today can be remarkable but either way it will still be hard for this family and When people all over the world read this story they want to help so help us to help them. Thanks Tell the family my thoughts are with them and that despite her condition their daughter looks loved by her mum and dad and that is the most important thing.
Maree, Scotland
09/06/2017 11:14
You are a beautiful family,stay strong. My heart goes out to this little girl.I hope the pain goes away soon.

Children are very resilient.

God bless
Carol Ryan, Guernsey
09/06/2017 04:07
If you wish help - Bank details at the bottom of the page
ED, Russia
09/06/2017 03:30
Hi all,

Please provide more details on how to contact the family to give them support.


Nicola Paganin, Italy
09/06/2017 02:21
Please tell us where we can donate help.!
Suzie hayward, Lunenburg Nova Scotia
08/06/2017 23:39
I totally agree with Sylvia. Could be great to have a way to send financial assistance in cases like this... please, consider our proposal.
Miguel Angel, Bacelona
08/06/2017 15:15
Dear editors of Siberian times, my heart breaks every time I read a story like this in your wondeeful paper. There are thousands of people in this world who would love to send financial assistance. I am an old woman on a pension and do not have much money. But if thousands of us unite and each send a little it would have to help. I feel so helpless here. I have no children, and was crippled since birth, all children are mine. Please, set up a fund, Darina's fund. We can't rule our governments but we can help each other.
sylvia, USA
08/06/2017 12:40

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