A mother whose face was left disfigured by a life-threatening disease is living with balloons underneath her skin to prepare her for surgery.Jennifer Hiles suffers from arterial venous malformation (AVM), which causes ‘tangles’ of veins and blood vessels to form beneath her skin, which spread like the branches of a tree.
The condition, which can also causes excess bleeding and even heart failure, has nearly killed her on several occasions – and she has been bullied throughout her life.While many surgeries to remove the tangles from her face have failed, she is about to have one final operation which doctors are confident will work.They will cut out all the tangles of blood vessels – and will also remove her nose and rebuild it from her jaw.
Until the operation, Mrs Hiles has had balloons inserted into her skin, to stretch it so the excess can be used to cover the scars.She hopes the operation will stop people calling her names and allow her to live a normal life with her husband and two children Marlina and Kiah.She said: ‘I just want to be able to spend all of my time with my kids without people looking at me and calling me names.
‘I just want to not be shy and be who I am without worrying about what people will think.’AVM is so hard to deal with – it makes my gums bleed and has completely eroded the bone in my teeth, if they fall out I could bleed to death.’Mrs Hiles, of South Dakota, will soon undergo surgery to remove the AVM tangles from her face.Until then, doctors have inserted balloons into her face which are filled with saline every week in order to stretch her skin.
When they carry out the surgery in May they will use the excess skin to cover up the scars left from the removal of the tangles.’They’re just like breast implants but in my face – like a big balloon with saline inside,’ Mrs Hiles said.’They don’t feel good – if you can imagine someone taking your skin and stretching it – that’s what this feels like.’They will also remove her nose and make a knew one out of my rib.
She continued: ‘The doctors will effectively remove all of the AVM – which is all of the pink on my face – and cover it with new skin from the expanders. ‘I don’t know if I’m going to look normal, I don’t want to look perfect, just normal.’When Mrs Hiles was born her family initially believed her facial deformity was the result of a birthmark – but it quickly worsened.
Her mother, Alfreda Simms, 44, said: ‘She needed constant blood transfusions.’They had tried to cauterize her veins and blood vessels to make it stop but nothing worked for her.’Seeing my daughter going through that was horrible.’Mrs Hiles was 12 years old when she was diagnosed with AVM and has had numerous unsuccessful surgeries throughout her life to remove the growths from her face.
The condition has meant that she has faced a lifetime of bullying and unwanted stares.Her family found the bullying hard to deal with when she was younger – but the constant fear of sh might die was more concerning.Mrs Simms said: ‘There would be times where I was terrified to go to sleep at night because her nose would bleed.
‘She wouldn’t be crying at all but I would just find her in her crib covered in blood.’She nearly died when she was 11 and had to be airlifted to hospital – she was bleeding from her nose and lost a ton of blood.’She only had two pints in her when they got her into hospital – that was the scariest day of my life.’The blood transfusions became so frequent that a portacath – a tube placed beneath the skin so liquid can be given directly – was placed directly into her heart.
Throughout school Mrs Hiles found it hard to make friends and boys would often date her in secret, as they were embarrassed to be seen with her.’I didn’t realise that I was so different until my first boyfriend,’ Mrs Hiles said.’He would always talk to me but then when we were in school he would completely ignore me and talk to the pretty girls.’That’s when it clicked in my head that I was different – I didn’t like feeling like that.’
But Mrs Hiles’ life changed when she met her future husband Dustin VanOverschelde in biology class.She said: ‘I remember he would give me a hug and kiss in school and that really surprised me.’He didn’t care that people could see him with me and that was the best feeling in the world.’He always tells me how beautiful and pretty I am, he is the best person in the whole world.’Mr VanOverschelde, 27, claims the cosmetic element of the surgery will have no bearing on him – instead he just hopes that it will lead to Mrs Hiles leading a longer and healthier life.
‘I can see past her outside because she is so beautiful on the inside,’ Mr VanOverschelde said.’It’s kind of scary to think about what she will look like because it’s just a mystery.’It won’t change the way I feel about her – I’m always going to think she is beautiful no matter what.’Any spare time Mrs Hiles gets is spent with her two young children Kya and Marlena, who understand their mother has a rare condition.
She loves to pick Marlena up from school every day – but finds people can react badly to her face.Mrs Hiles, 28, added: ‘Some of the younger children can be quite mean – one kid once looked at me and screamed what is wrong with her face.’They were all literally screaming at me like I was a monster.She continued: ‘They said it was gross and were asking whose mum is that.
‘I didn’t hug or kiss my Marlena when she got out of school because I didn’t want people to know that I was her mum.’I worry about the children making fun of her – I don’t want her to be affected by it.’Once the procedure is complete, Mrs Hiles hopes the bleeding will stop and she can being living a normal life with her husband and children.She said: ‘If I don’t ever have to worry about bleeding, haemorrhaging or being called names when I pick up my children that would be a dream come true.’I would be the happiest woman in the world if I could go for lunch with my family and not be stared at.