JENNIFER HILES: I just want to be able to
spend all my time with my kids without people looking at me or calling me names. I just
wanna not be shy; I wanna be who I am.
COMM: Jennifer Hiles was born with an arteriovenous
malformation or AVM, a jumbled mass of arteries and veins in her head and on her face, which
could haemorrhage at any moment, possibly fatally. And now she has had tissue expanders
placed under the skin of her face.
JENNIFER HILES: It’s like a big balloon
with helium inside. Basically like breast implants, just in my face.
COMM: As these are enlarged over the course
of two months by adding more liquid, they will allow extra skin to grow, which will
be used as grafts when she has her AVM removed in May.
JENNIFER HILES: They’re gonna remove all
my AVM and all the bad tissues which is all the pink, and remove my nose, and build me
a new nose out of my rib. And then since all this damaged tissue will be gone, they’ll
need something to replace it with, so remove these expanders and they’ll have a whole
bunch of skin to work with. So I’ll have a normal white-coloured face. I don’t know
if I’m gonna look like normal, like I don’t wanna look perfect, I just wanna look normal.
I guess we’ll see.
DUSTIN VANOVERSCHELDE: I can see past like
her outside figure ‘cause she’s so beautiful on the inside it doesn’t really matter about
what’s on the outside to me. It’s kinda scary to think about like what she is gonna
look like, ‘cause like who knows like she’s like a mystery. So, it’s gonna be weird
to get used to but it’s not gonna determine like the way I act or feel around her. Like
I’m always gonna think she is beautiful.
DAUGHTER: It’s gonna almost get 100 pounds.
JENNIFER HILES: 100 pounds? Oh my god! DAUGHTER: Probably this big!
COMM: When Jennifer was born she had a birthmark,
which soon grew worse.
JENNIFER HILES: I started to bleed all the
time when I was like three months old, so I would always have to get blood transfusions.
ALFREDA SIEMS: They had tried to cauterise
her veins, blood vessels to see if that would make it stop and that would not. That wouldn’t
even work for her. They’d be times when I was terrified to go to sleep that night
because her nose would bleed in the middle of the night, with her not even crying or
anything. And I’d wake up and there would just be blood covered all over the sheets.
It got down her stomach and that would make her really sick. There was a point in time
where she got so sick and was so pale that she threw up a ton of blood and I had to call
911. I almost lost my daughter! It was the scariest day of my life. She only had like
two pints of blood in her body left, they had to give her a blood transfusion.
COMM: Although Jennifer was officially diagnosed
with AVM age 12, and has had several surgeries including the removal of benign tumours,
she is still at risk from blood loss.
JENNIFER HILES: This basically makes my nose
bleed all the time, makes my gums bleed and has completely eroded the bone line in my
teeth and if my teeth fall out then I could bleed to death. So that really impacts my
life a lot, it makes my throat bleed, it makes me have headaches like all the time, because
of all the arteries in my head just constantly pounding.
COMM: Her condition has meant she’s faced
a lifetime of unwanted attention, and this can still be a problem when she picks her
children up from school.
JENNIFER HILES: As soon as all the first graders
come out the door, one of them looked over at me and he just yelled, “What’s wrong
with her face? What’s wrong with that lady’s face?” and they say it’s gross and sick
and be like, “Who’s mom is that?” Like last time they did that, I waited for my daughter
to come outside and I didn’t even say anything to her, give her a hug like I normally do.
I just walked straight past her like into the school because I felt like I was going
to cry or like pass out. Like I’m more worried about them making fun of my daughter than
they are of me! I don’t want her to be affected by it. Because kids can be mean. There are
days where I feel really overwhelmed and really tired of like everything I have to go through
just to feel good again. And I know that I do a really good job at like tricking everybody
‘cause I always like try to pretend like I’m really positive or be really positive
and so I guess I kind of feel alone in that sense. Like I just try to tell people that
everything is going good and be positive about stuff, but it’s really hard to do that.
Like I kind of feel like a really big liar because I tell everyone like everything is
going good.
COMM: As she prepares for her operation, Jennifer
has explained to her children about the procedure she’s undergoing.
DAUGHTER: I know what they’re gonna do!
They’re gonna cut that pink off your face, they are gonna cut your nose off.
DAUGHTER: There’s going to be blood. DAUGHTER: Everywhere!
JENNIFER HILES: I kind of told the girls like
what’s gonna happen and how it’s gonna look, and how it might be kind of scary for
them. And Marlena like instantly started crying and she said she didn’t want to see me like
that, but then she don’t want to be without me for a long time either.
COMM: Once her operations in May are complete,
she hopes the bleeding will stop and her appearance will be more normal.
ALFREDA SIEMS: I’m praying and hoping that
she can live a happier and healthier life, where she can go out in public, where people
won’t stare at her and think, you know, where she don’t feel like she’s any different
from anybody else.
JENNIFER HILES: If I don’t ever have to
worry about like bleeding or haemorrhaging, or going to the school and having kids not
call names while I pick up Marlena, or if I wanna go have lunch with her and all of
that, that would be like the happiest thing ever! I don’t even know what that would
feel like; it would just be really awesome!