A mum has had balloons placed under her skin because of a rare condition that could kill her at any time.
Jennifer Hiles, 28, suffers from AVM – or arterial venous malformation – which leads to abnormal connections between the arteries and veins in her face.
The painful condition has nearly killed her on numerous occasions but she is hoping that an upcoming surgery will remove it forever.
‘I just want to be able to spend all of my time with my kids without people looking at me and calling me names,’ says Jennifer, ‘…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.’
The balloons in Jennifer’s face are filled with saline every week for eight weeks to extend her skin.
When she goes for the surgery doctors will use the excess skin to cover up the scars left from the removal of the AVM.
‘They’re just like breast implants but in my face – like a big balloon with saline inside,’ says Jennifer. ‘They don’t feel good – if you can imagine someone taking your skin and stretching it – that’s what this feels like.
‘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.
‘They will remove my nose and make me a new one out of my rib – they’ll have a whole bunch of skin to work with.
‘I don’t know if I’m going to look normal, I don’t want to look perfect, just normal.’
When Jennifer was born, her family initially believed her facial deformity was the result of a birthmark – but it quickly worsened.
Her mother, Alfreda Simms, 44, says: ‘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.’
Jennifer, who lives in South Dakota, USA, was around 12 when she was diagnosed with AVM and has had numerous unsuccessful surgeries throughout her life to remove it.
The condition has meant that she’s faced a lifetime of bullying and unwanted stares.
Her family found the bullying hard to deal with when she was younger but it was the constant fear of Jennifer’s death that was their main concern.
Alfreda says: ‘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.’
Throughout school, Jennifer 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,’ says Jennifer. ‘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 Jennifer’s life changed when she met her future husband Dustin in Biology class.
‘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 – 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.’
Dustin, 27, claims the cosmetic element of the surgery will have no bearing on him – instead he just hopes that it will lead to Jennifer leading a longer and healthier life.
‘I can see past her outside because she is so beautiful on the inside,’ he says. ‘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 Jennifer gets is spent with her two young children Kya and Marlena who she has tried to help understand the situation.
She loves to pick Marlena up from school every day but even that can be an ordeal at times.
Jennifer says: ‘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. 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.’
Once the procedure is complete, Jennifer hopes the bleeding will stop and she can get on with living a normal life with her husband and children.
She says: ‘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. I can’t even imagine it – it will be a dream come true.’