Jillian was born on October 8, 2007. During our 3-day stay in the hospital
we noticed a very small, faint pink mark below her right ear. It looked
like a “pressure” mark or blotchy spot from just giving
birth. We soon realized that wasn’t it. The hospital nurse calmly
stated that it could possibly be a birthmark. Just keep an eye on it.
We weren’t worried at all.
Jillian’s follow up appointment with her pediatrician was two
days later. Her Dr. told us a bit more -- that “it looks like
it could be a “strawberry” birthmark. Keep an eye on it
and watch to see if it raises, gets darker, bigger, etc. After only
2-3 weeks, the mark did raise, got bigger, darker and I started to get
worried and concerned.
By December 8th (exactly 2 months old) it was bright red, the size
of a walnut and the folds of skin were getting trickier to clean and
keep dry. This was a fast-growing hemangioma. An ulceration formed between
the folds of skin by Christmas. We had to see a specialist. We were
able to get in to Children’s Hospital in Boston. Unfortunately
I was not happy with their approach. They had to clean Jillian’s
wound and both she and I were very distraught over it. Their “wait
and see” practice did not sit with me very well. I thought there
must be other options? I couldn’t imagine her birthmark getting
any bigger! A few weeks prior, my cousin Jeri had told me about a Doctor
at the Mass Eye & Ear – Dr. Aaron Fay. I scheduled an appointment
for January 2, 2008. After the experience at Children’s just days
before, I was ambivalent to keep the one at MEEI – but I did.
My experience was very different. I felt reassured and hopeful that
I found the right place for Jillian. They explained a lot of information
to me and right then and there I decided to start Jillian on steroid
injections. Her first injection was that day.
It is now April 28th, and so far Jillian hasn’t required another
injection. The hemangioma seems to have “quieted down”.
It’s not growing, is stable, soft, and getting a bit lighter red
in color. I feel more at ease and less stressed about her birthmark.
Our next appointment is May 14th. I keep thinking how fortunate we are.
Jillian is almost 7 months old. She is a healthy, very happy and smiley
baby and her birthmark hasn’t affected her health in any way.
I wouldn’t be human to say that I am nervous as heck anticipating
surgery, and I hope and pray that our future road won’t have many
bumps. I can only say that we hope we are doing the right thing for
Jillian. Surgery is suggested between 9-12 months old. That will be
our next hurdle.
I have met with and spoken to amazing parents of children who were
born with larger and more severe hemangiomas. Their stories are heart-gripping,
incredible, and inspirational all at the same time. We are extremely
fortunate that Jillian’s birthmark isn’t a severe case,
but it’s a hemangioma nonetheless.
I hope for a successful Vascular Birthmark Awareness Day on May 15th.
Those who are holding special events and fundraisers -- God Bless! Thank
you, VBF for the opportunity to share our story.
Jillian at 5 days old (very light pink mark on and under her right ear
2 weeks (birthmark getting darker pink/red and raising below ear lobe)
December 10, 2007 (2 months: has grown quickly; is the size of a golf
Christmas, 2007 (ulceration began this week between folds of skin).
Saw Dr. Fay on January 2, 2008 for
first steroid injection.
April 8, 2008