Read Sarah's Blog here
Sarah was born they told us that she had a birthing bruise on her face,
and that it would go away within a few days, the very next day we were
told that what she had was a port wine stain and at her first doctors
appointment we were referred to a dermatologist. We went to the dermatologist
and he walked into the room, looked at her and said yep, its a port
wine stain, don't worry at one year of age we will remove it and have
no problems, it takes 10 years to have any growth to it at all so don't
worry! Then he sent us on our way.
Two weeks later Sarah had a thickening above her eye and swelling in
front of her right ear. She had already seen an eye doctor to determine
glaucoma, so being it was affecting her eye we took her to her eye doctor,
dermatologist, and ped. in one day, the eye doctor said everything was
fine, so we headed over to her dermatologist. He walked in and took
a look at her and pulled his glasses down, squeezed her face, pushed
and poked, then told us to go to her ped. Nothing else. We headed to
her ped. and there she also did the same poking and prodding and told
us she didn't know...she went and pulled another doctor in and they
looked and talked and then left to go call her dermatologist...approx.
three hours later we left knowing Sarah was going to have a cat scan...that's
A week later is when we found out she has a Hemangioma. We got more
doctors and Sarah went on medicine to suppress it. They put her on steroids
and other medicine to protect her stomach from the steroid. Later she
was put on a third to help do the same thing. We found out who the top
doctor in North Carolina was, so we decided to go see him, it was another
round of being told not to worry. My husband (Chuck) and I wanted to
get Sarah an MRI to determine if she had any on the inside, he said
it wasn't necessary, so we then got another doctor, her hematologist
Dr. Mogul to order it. He did and they told us not to worry, if there
was anything there then they would call us, if not then they would call
us on Monday. We got the call before we even made it home. Sarah has
two more on the inside of her face on the left side that we cannot see.
One is behind her left eye, and the other starts at her left ear and
runs to sit beside her airway.
Once we found out this new information and talking to Dr. Mogul, we
soon realized that Sarah needed more help than what we could provide
for her here in North Carolina. That's when we contacted Dr. Waner and
Dr. Levitian in New York. Come to find out it was the best decision
we made. When we went to New York for the first time Chuck and I felt
as if we were in a small boat in the ocean with a hole in the boat.
We had no hope. We didn't know what to expect. But meeting those two,
not only did they fix our hole, but they brought us to dry land! It
was the first time we felt hope. Sarah had her first laser surgery the
very next day. She was 4 months old.
Meeting the doctors we found out Sarah needed to have the surgery every
four weeks to control the hemangioma. It didn't matter to us, we just
knew we had to do it. Dr. Waner and Dr. Levitian discussed it with Dr.
Mogul and wanted her to be weaned off of her steroid so that it would
allow the hemangioma to grow so that they could get more of it during
the surgeries. The night before we flew for her second surgery we had
to rush Sarah to the ER, she was having a bad withdrawal from the steroid,
by now she had been on the medicine since she was two weeks old. She
was so dehydrated from throwing up so much they couldn't even get an
IV on her to give her fluids. On the verge of being admitted, they decided
against it since she was flying to New York the next day, even though
we didn't know if she could still go or not. We found out that she could
still travel and have surgery, so we took off, once we got to New York
Dr. Waner noticed Sarah's soft spot was swollen and ordered her to go
to a pediatric neurosurgeon to get looked at. He then ordered a cat
scan in the morning before surgery...again we didn't know if surgery
was going to be canceled. The morning of the surgery she had her cat
scan and everything was normal! It was just swollen due to her being
sick from withdrawal; Sarah had her surgery and everything went fine.
After we came home from her second surgery we noticed a massive increase
in the growing of her face...we talked to to doctors in New York and
with Dr. Mogul here, and they informed us that it was time for chemo.
Sarah had four rounds of Chemo.
Present day...today Sarah has had three surgeries and we are getting
ready to pack for her fourth, she has another planned and scheduled
and we will then get a re-evaluation to determine whether or not we
will continue to come every four weeks or be able to space it out to
every six weeks. Sarah has had multiple ulcerations that have left some
nasty scars but we have been told that those can be taken care of, she
will also have to have some reconstruction done on her bottom lip.
Sarah is such a wonderful little blessing and we can't seem to get
enough of her and her 100 watt smile! We know she has a long road ahead
of her but we know she will make it and we will be there right beside
of her! This is Sarah's time line, a breakdown of all she has had done
and gone through. If you would like to continue to read and follow Sarah's
progress you can go look at her web site at http://www.porkchopsarah.blogspot.com/
Thank you for supporting the Vascular Birthmark Foundation and reading
Kim and Chuck Porter.