Chloe Simone Grant 1/12/2008: Coming home from
fourth child, Chloe Simone arrived in the world on January 10th, 2008.
My first two pregnancies resulted in (healthy) pre-term boys. My third
pregnancy was blissfully uneventful, until the evening after Avery was
born. The following week was harrowing. She was diagnosed with an aortic
valve defect and had what the neonatologists describe as unilateral
seizures. Long story short, she is a healthy, beautiful three year old
Shortly before Avery's first birthday we received the best surprise
of our lives. I was pregnant! Doctors had implied that I would not be
able to conceive on my own.
Chloe was my biggest, healthiest baby yet. At her five day check-up,
my pediatrician pointed out what looked like a red brush-stroke on her
back. I felt mortified that I had not noticed it before..it literally
appeared out of nowhere. She said this is a hemangioma. I thought nothing
of it...after all we had been through with Avery, surely we could live
with a red stripe on Chloe's back.
Within the next two to three weeks, Chloe's brush-stroke grew larger
by the day. Before long it was a huge mass on her back. We had been
told not to worry, that they "go away on their own". So we
took care of Chloe as we did our other babies. We swaddled her, put
her to sleep on her back. We soothed her in her swing. When Chloe was
exactly six weeks old I noticed that her hemangioma was turning dark
in some areas. Within a few days it was oozing clear fluid. I rushed
her into my pediatrician, and then to my dermatologist. He immediately
sent us to the pediatric dermatologist at our local children's hospital.
Chloe's hemagioma had ulcerated from her being placed on her back and
its rapid growth. It took months for it to heal. We had to use a topical
medication with growth-factors called Regranex. Chloe's hemangioma was
covered in sterile pads and her abdomen was wrapped in gauze from the
time she was 6 weeks old until she was eight months old. She was prohibited
from being on her back unless she was in the car to go to a doctor's
appointment. At home, we strapped her onto a changing pad, on her belly
when she could not be supervised on the floor. She slept in a Tucker
Sling, which is designed for babies with reflux. It kept her from rolling
onto her back at night. The first few nights when I put her to bed on
her stomach I was sleepless with fear that I would wake to find her
Chloe's ulcerated hemgioma: March, 2008
an odd way, Chloe's hemangioma bothered me more than her sister's heart
defect. I had to see it everyday when I changed her dressings and bathed
her. It protruded from her clothes. It was 6 cm x 8 cm and pedunculated
(raised) like a mushroom. I had anger at this growth that had caused
my child so much pain. I accepted that we would wait our time out until
Chloe on her belly: under her clothes you can see her gauze
April, while on vacation in Florida, my son Andrew was playing with
Chloe by the pool and her swim shirt came up above her hemangioma. Some
other children nearby saw it an said: "Gross! What is that?"
My heart sunk. Chloe did not know at 15 months what had occurred, but
she would understand soon, and it would be years before her hemangioma
Serendipitously, upon returning from Florida, I had struck up a conversation
with a woman whose neighbor's daughter had had a hemagioma removed by
a local pediatric ENT physician. I did a little research on Dr. Mark
Nagy and learned that in addition to being a well-known local ENT, he
was also specially trained in hemangioma treatment. I made an appointment
to get a consultation with Dr. Nagy, fully expecting him to tell me
that we would have the best result if we wait for it to involute.
Instead, Dr. Nagy explained that a hemgioma of Chloe's size, that had
been so ulcerated, would require surgery following involution. Typically,
in the end, hemangiomas like Chloe's end up as a hanging sac of fatty
tissue covered by the scar tissue from the ulceration. This is usually
not an acceptable cosmetic result.
Chloe's hemangioma the day before her surgery (16 months old)
after doing some research, which included consulting Dr. Waner via the
VBF website, we scheduled Chloe's excision for June, 1, 2009. It was
a three hour procedure. I will never forget how I felt when I saw her
in recovery, resting peacefully. It was OVER. Her hemangioma was gone
and her back was flat. By the following day she did not even need Tylenol.
Children can be amazingly resilient. By removing the tumor before she
turned two, Chloe never developed any self-awareness of it.
Chloe's incision 6 weeks post-op.
red marks in the incison are tiny remains of the edges of her hermangioma.
In order to excise her tumor and close it without "tightness"
in the surrounding skin, a few dots of the edges of the hemagioma remain.
They are totaly flat and will fade in the near future.
Families need to be educated about their options. We want parents
to be aware of the psycho-social effects of having a baby with a large
hemangioma. I felt ashamed that I felt so strongly about a "benign"
tumor that "would go away on its own". No parent should feel
that way. It is very painful to look at your baby and see such an unanticipated
growth. It can also be painful for siblings who have to explain what
it is. Furthermore, it can be very damaging emotionally, for the child
whose visible hemangioma takes years to fully involute.
My husband and I feel so grateful that we have such a talented hemagioma
specialist in Western New York. We want all parents of babies with hemangiomas
to be aware that there are options out there that your doctor may not
know about. To treat a hemangioma is a decision unique to each child
and each family. In our case, we couldn't be happier.