Jennifer Hiles, from South Dakota, suffered from birth with arterial venous malformation (AVM).
The condition leads to abnormal connections between the arteries and veins in her face, causing tangles of blood vessels under her skin. The rare disease causes serious haemorrhaging and Jennifer could have bled to death at any time.
Her family are hoping that, after travelling to New York for treatment, her latest surgery has removed it forever.
29 year old Jennifer spent the eight weeks before her operation with saline-filled tissue expanders under the skin of her forehead and cheek. They were inflated every week to allow new skin to grow and resembled breast implants! Doctors removed the AVM from her face and patched over the gaps with the new skin.
Jennifer is thrilled with the results, saying: “When I first woke up and I was in the recovery room I actually felt so good that I didn’t feel like I’d had the surgery at all… I asked him (a doctor) to take a picture of my face and I was so happy. I just couldn’t believe it was me.”
When Jennifer was born her family thought her facial deformity was the result of a birthmark – but the red scars, swelling and frequent nosebleeds quickly got far worse. It took 12 YEARS for her disease to be properly diagnosed and meant she has dealt with years of bullying about her looks.
But the brave mum of two isn’t worried about her appearance, saying: “I don’t know if I’m ever going to look normal; I don’t want to look perfect, just normal.” And her husband Dustin, 27, agreed, saying: “I just hope that she’s happy with all of the surgeries and how she looks in the end – I just want to have a healthy wife.”
Dustin, and the couple’s two children, seven year old Marlina and five year old Kiah, travelled with her to Lenox Hill Hospital for the surgeries – including six smaller procedures after the tissue expanders were removed.
Jennifer’s surgeon, Dr. Milton Waner, said that her procedure went “exceptionally well. I’m very happy, so when she’s healed up she’s going to look very good.”
“She faced a life of huge problems – she has a husband, she has two beautiful children and we’ve now been able to give her a chance to live a normal life.”
However, despite the successful surgery, the healing process did not go as smoothly, after the skin on Jennifer’s right cheek began to die, leaving horrific scars and dead tissue.
Jennifer said: “When your skin is literally dying on your face it’s really scary. I would look in my mirror 100 times a day just to see what’s changing and then just kind of pray, just hoping that it would get better.”
While Jennifer will need many more cosmetic procedures in the future to remove her scars and treat the AVM that her doctors predict will continue to grow back, she is no longer in danger of dying from a haemorrhage.
Jennifer added: “I’m happy with where I’m at right now with all the progress, just to see how far I’ve come makes me so hopeful for the future.”
“I just hope that all my next surgeries go as planned and the scars all fade and one day I can just walk into a room and have people see me for me and not my condition all the time.”
Jennifer is currently raising funds to help pay for her future surgeries.
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