Mei’s Hemangioma Story
My daughter Mei and her twin sister Charlotte were born in May of 2007.
They joined our immediate family that included a five year old sister,
three year old brother and a large, close extended family. Both girls
were the result of a very uneventful and healthy twin pregnancy, which
went to term and brought us two healthy girls. Charlotte was fortunate
to have remained healthy. This is the story of our daughter Mei and
her battle with a large facial hemangioma.
1 day old: Mei is on the right
It was not until Mei’s second day of life that we noticed the
spot on the corner of her eye. I remember asking the nurse about it
and she theorized that it was probably just a “pressure mark”
resulting from her position in the womb, and that it was not anything
to worry about. She felt certain it would go away in a day or so. On
the third day, it had grown darker and been joined by a small mark above
her lip. At this time, we discussed it with the visiting pediatrician
who explained to us that it was likely a hemangioma. He used the charming
term “Angel Kiss” and told us it was very common and would
grow slowly and then disappear on its own. My husband, Stefan, and I
breathed a sigh of relief and went about the business of being discharged
out of the hospital and readied ourselves for the challenges of caring
for our twins and helping our older children adjust.
Six days old
Mei’s hemangioma continued to grow. By her sixth day of life
the “spot” on her cheek had taken on its own unique shape
and now looked some newly discovered eighth continent. It had distinct
borders and was getting darker by the day. By the thirteenth day, it
was clear that this was more than a surface imperfection. Something
was happening deep in Mei’s face and a bulge was forming around
her upper cheek and temple. My memories of this time are fuzzy; at the
time I was struggling to nurse the twins, recover from my c-section
and manage the older children - all on roughly four hours of disjointed
sleep per night. I’m not sure if it was the sleep deprivation
or just pure denial that kept me clinging to the pediatrician’s
diagnosis, but I have a clear memory of my father visiting one late
afternoon. He was standing in my kitchen, looking down at Mei who was
in her bouncy chair. He said to me, “That’s growing awfully
fast.”. Suddenly my heart was filled with dread because I knew
he was right. I got on the phone with Mei’s doctor’s office
and demanded that my daughter be seen that night. It was a Friday and
I got her in with a Doctor in the practice that I knew casually. She
recognized immediately that this was outside of her knowledge set as
a generalist and that we needed to see a specialist as soon as possible.
She picked up her personal cell phone and contacted a colleague of hers
at Dartmouth-Hitchcock Medical Center in Lebanon, New Hampshire. I felt
relieved that we were going to be seen at the only university affiliated
hospital in our state of New Hampshire and that the doctors there were
willing to come in on an emergency basis on a Saturday.
Three weeks old
Two doctors met us in the empty lobby of the dermatology practice.
They examined Mei and confirmed the hemangioma diagnosis. They believed
that oral steroids were the answer and that this course of treatment
would slow the rapid growth. They showed us before and after photos
of other children they had treated successfully with either oral steroids
or the “wait and see” approach. The photos were frightening
but encouraging. Throughout our visit the senior doctor frequently held
side conversations with the junior doctor using a tone and language
that made it clear that this was a teaching opportunity and not information
for us to regard. One topic of these side conversations was chemotherapy
and I recall him using the words Vincristine and Interferon. He brought
them up in a disregarding manner implying their inappropriateness. We
left the office that day with a prescription for ongoing steroids and
a sense of relief that we had seen the expert in our area.
For the next several weeks, Mei’s hemangioma continued to grow.
Despite increasing the dosage, the oral steroids had no effect. One
of the potential side effects of the steroids was an increase in blood
pressure, so a visiting nurse came to our home weekly to take Mei’s
blood pressure. Also, every doctor’s visit required her blood
pressure to be taken. It turned out to be very nerve racking as it was
almost impossible to get a reliable blood pressure reading on a baby
so small, especially if the baby was crying. More often than not we
would have to give up after several attempts and we were never really
sure what was happening with her blood pressure. The only health care
professionals who could consistently get a good reading were the neonatal
intensive care (NICU) nurses. There were a few times when I had to find
a NICU and get a quick reading.
Despite the continued rapid growth of Mei’s hemangioma, the New
Hampshire doctors never recommended a change in approach. We began taking
pictures of the hemangioma every 48 hours, as it was expanding so rapidly.
It had now turned a dark purple and the deep component was making the
left side of her face bulge out. In addition, the surface hemangioma
was becoming so thick that her skin was straining to contain it. Her
cheek took on a shiny appearance and her skin looked like it was about
to burst open. Alarmingly, the hemangioma was now growing up into the
line of vision on her left eye. I would make the one hour drive north
every week to have her examined at Dartmouth. One week my father decided
to come along for an appointment which my husband was not able to attend.
As we were exiting the building, following the appointment, I recall
my father turning to me and saying, “These are really nice people
but they can’t help you. They don’t have the answers you
need”. I knew he was right.
4 weeks old
6 weeks old
That afternoon, my good friend Kim stopped by to see the new babies.
Five years prior, she had worked with melanoma patients at the Massachusetts
General Hospital (MGH) Department of Dermatology. She told me she had
worked alongside Dr. Martin Mihm, a world renouned dermatologist who
specialized in treating hemangionas. At the time, he was the medical
director of the MGH Hemangioma Clinic - a monthly vascular birthmark
clinic that treated patients with challenging cases from all around
the world. I made a call to the hospital and was relieved to discover
Dr. Mihm was still at the hospital and still running clinics. I made
an appointment for the next clinic, which was two and a half weeks away
and then waited while my child’s face continued to grow.
Dr. Mihm’s clinic visit was a surreal experience. We were first
taken into an exam room where a doctor examined Mei and took notes as
we conveyed her medical history to date. The doctor then left the room
only to return 15 minutes later to lead us to another room. We expected
to be brought to another exam room. We were shocked to be led into a
boardroom where over 20 doctors were seated around the table and lined
up in chairs around the outskirts of the room. Several doctors crowded
around us. Stefan and I wound up separated while he showed our photos
to one group of doctors and answered their questions, while I held the
baby and another group of doctors questioned me. They had me take off
Mei’s clothes so they could examine her entire body. After 15
or so minutes in the boardroom we were led back to the original exam
room to wait.
Dr. Michael Cunningham, an ENT, returned to deliver the opinion of
the group. He explained that Mei had a segmental hemangioma which was
characterized by both surface and deep components. He shared that they
were very concerned about Mei and that they felt she needed several
tests to determine whether or not additional hemangiomas were growing
internally. They wanted her to have a contrast enhanced MRI of the craniofacial
region and the brain, as well as an abdominal ultrasound, a cardiac
echo and an endoscopy of her airway. Dr. Cunningham also shared that
the group was concerned that Mei might be suffering from PHACES syndrome
which could cause abnormalities in several of her organ systems including
her heart and her central nervous system among others. It was clear
to the group that the steroids were not an effective treatment, and
they believed chemotherapy was going to stop the incredibly rapid growth
phase of Mei’s hemangioma. During our conversation with Dr. Cunningham,
Dr. Mihm was making phone calls to his colleagues at MGH Oncology. Dr.
Mihm explained that Mei could benefit from weekly doses of Vincristine.
He gave us the name of Dr. Alison Friedmann; a well respected pediatric
oncologist and told us to call her number Monday morning. We would be
seen that day and he advised us to pack a bag as Mei would likely be
admitted to the hospital for all of the above testing Dr. Cunninham
mentioned, as well as the surgical insertion of a central line which
is necessary to administer the Vincristine.
We were stunned, overwhelmed and terrified. As we were packing up our
things in the waiting area Linda Rozell-Shannon came out to speak with
us. Linda is a parent whose child also had a facial hemangioma and her
experience as a mother led her to found the Vascular Birthmark Foundation.
Linda is also recognized as the leading lay expert in the world on the
subject of vascular birthmarks. Linda was very direct with us and shared
that in the eight years they have been holding this clinic in Boston,
they have only seen two other cases this aggressive. She asked me how
far I lived from Manhattan and encouraged me to see Dr. Milton Waner.
I’ll never forget her words when she said, “If you go to
see Dr. Waner, you will be able to go to bed every night knowing that
you have done everything you could possibly do for your child.”.
We were soon to learn that Dr. Waner is the internationally recognized
authority on hemangiomas and vascular birthmarks. He is the best of
With Linda in the lobby was Dr. Aaron Fay. Dr. Fay is an eye plastics
surgeon at the Massachusetts Eye and Ear Infirmary who specializes in
treating children with hemangiomas affecting the eye. At the time, we
didn’t know that Dr. Fay would become one of the primary physicians
we came to rely upon.
The following Monday Mei was admitted to the hospital where she and
I would remain for five days of testing. The most painful part of the
whole week was watching her suffer as they attempted to place an IV
in her little hand. She was only five weeks old and so tiny. Each day
brought a new test and new results. We counted our blessings every day
as each test brought good news. Mei had no other hemangiomas growing
internally and her organs were all perfectly healthy. Mei did need to
have surgery to put in a central line. A central line is a type of IV,
which goes into one of the major veins of the heart. This was the only
way to administer the Vincristine. The primary risk with a central line
is infection. Mei was fortunate to be able to get a porta-cath inserted.
The porta-cath was completely enclosed under her skin and looked like
a button under the skin on her chest. Porta-caths have a lower infection
rate when compared to the type of central line where the tubes protrude
from the chest (Broviak).
Mei received her first dose of chemo at the hospital. From this point
forward, I would need to bring her to Boston weekly for chemo. It was
during our time at the hospital that Mei’s lip began to ulcerate.
A dermatologist visited us and we discussed treating the ulceration
with pulse-dye laser in the near future. At that point we packed up,
headed home, and began the three-day wait to see Dr. Waner in New York.
Dr. Waner’s office was filled with babies and luggage. Most of
his patients travel from afar to have their child seen. The lobby was
crowded with people from all over the United States and two couples
from Europe. For the first time, Mei was not the worst case in the room.
I remember reading the books that parents had written about their hemangioma
journey and holding back tears as I saw the terrible photos of suffering
children. On the flip side, it was heartening to see these children
healed at the end of the stories. The message I took from these books
was that Mei would get worse before she would get better, but that she
would get better.
I cried in Dr. Waner’s office. I’m sure this happens all
of the time but I’m still embarrassed by it. I cried when he looked
me in the eye and told me that my child would eventually be fine and
I would be able to look back on this as an unpleasant chapter in her
life that was closed. I cried because it seemed too good a prediction
to be true. It sounded impossible as I looked down on my baby’s
tight, swollen skin and the huge lump that was growing somewhere deep
inside of her face.
Dr. Waner was pleased that Mei had begun Vincristine and felt strongly
that she should have interlesional steroid injections in addition to
the chemo. We agreed that she would receive the injections in Boston
with Dr. Fay. He also encouraged us to have her ulcerating lip treated
immediately with pulse dye laser as the condition of her lip was rapidly
deteriorating. Mei’s ulcerated lip would soon become our top concern.
Shortly after meeting Dr. Waner we took Mei, now seven weeks old, to
Dr. Fay’s practice where she received her first steroid injection.
The injections were as painful for me to watch as they were for Mei
to endure. Mei had to be held down and her head kept still while Dr.
Fay injected her deep within her face as well as superficially. My job
was to hold Mei’s arms down and try to comfort her. It was quite
bloody and anyone taking their child to have steroid injections should
prepare themselves. The effect of the injections, however, was better
than we had dared to dream. Within 12 hours the painfully tight appearance
of her hemangioma disappeared and was replaced with a pebbly matte texture.
I was able to breathe a sigh of relief. For weeks, I had been living
with the very real fear that her entire cheek could ulcerate at any
moment. The deep component of her hemangioma was also greatly improved
and we watched with joy as the protrusion began to shrink. We had finally
hit upon something that had immediate results. We would repeat this
process with Dr. Fay several times over the next 5 months. No subsequent
session would yield the dramatic results of the first visit, but each
injection did bring reliable improvement. Dr. Fay, with Dr. Friedmann,
became the pillars of our everyday medical team.
The day after meeting with Dr. Fay, we met with the same Dermatologist
we had consulted with in the hospital. She treated Mei’s lip with
a pulse dye laser in the office with no anesthesia. The treatment took
less than one minute although it was painful. Adults who have work done
with this type of laser liken the sensation to being snapped repeatedly
with a rubber band. Unfortunately the laser was not effective and actually
worsened the ulceration. Over the next couple of days the entire left
side of Mei’s upper lip became an open, weeping wound. For the
next several months we fought to keep Mei comfortable and eating, as
the wound struggled to heal itself. My sister, a nursing student at
the time, got her hands on a special bottle meant for babies with cleft
lips/palates called the Haberman Feeder. This bottle required very minimal
sucking and you could actually squeeze the nipple to “shoot”
milk into the baby’s mouth. The Haberman became the only bottle
Mei would drink from. She would also only drink while being held by
me while I stood and swayed about the room. She would not drink if I
sat. Mei had to be kept on pain medication around the clock for the
remainder of the summer.
7 weeks old
Mei quickly begin to lag behind developmentally and there grew a stark
contrast between her abilities and those of her twin sister. The combination
of the pain medication and the lack of nutrition produced a listlessness
in Mei. She simply did not have the energy to develop or even move much.
At this time, our pediatrician had her evaluated for early intervention
services. A team of physical and occupational therapy specialists came
to assess Mei at home. The results of the assessment were dismal. In
one section of the assessment, the therapists noted that Mei “seems
to have difficulty moving her body against gravity”. She would
receive weekly physical therapy sessions for the next year until she
was almost entirely caught up.
As you can imagine, eating was a painful experience for Mei and to
say that she was a poor eater would be an understatement. Even when
her lip eventually healed, her appetite did not improve. Dr. Friedmann
would have her weighed every Thursday when she received her chemo and
it became clear that Mei just was not growing. We will never be sure
exactly why Mei did not eat well. It may have been the Vincristine (although
older patients who have been on Vincristine have not noted a significant
lack of appetite). It may also have been that, because of her experience
with her ulcerated lip, Mei just had a negative association with eating.
She would frequently eat less than 10 ounces of formula per day. Our
pediatrician set a very modest goal of 17 ounces of formula per 24 hour
period, which we never met. Mei’s milk had to be specially formulated
for added calories by concentrating the powder and adding corn syrup.
In addition to not eating well, Mei vomited frequently and rarely kept
down any liquid medication. She was also very slow to accept baby food
or solid food. If she did eat solids, her milk consumption would plummet
We watched as Mei got thinner and thinner. Her weight problem was only
highlighted by comparing her to her twin who was also on the small side
but clearly growing at a normal rate. Mei’s legs, in particular,
became very disproportionately short. By the time she was six months
old, she was officially diagnosed as failure to thrive. At nine months
old, Dr. Friedmann had us bring Mei to Dr. Gary Russell who is a pediatric
gastroenterologist who put Mei on an appetite stimulant. Mei was clinically
malnourished and wasn’t even close to being on the growth chart.
The stimulant was very successful and we watched with relief as Mei
finally began eating, growing and developing. With the nutrition she
needed, Mei began rapidly reaching all of the physical milestones she
had missed. Within three months of beginning the appetite stimulant
she began to crawl at 11 months of age. The day she finally made it
on the chart was a great day of celebration. Her legs eventually did
grow into proportion with her body also.
9 weeks old
Around this time we also began taking Mei every two months to a pediatric
opthamologist who would check Mei for an astigmatism every 6-8 weeks.
She recommended we patch her unaffected eye for two hours each day to
ensure her impaired eye would keep all of its functionality. Mei also
developed a preference for looking up and to the left whenever placed
in a bouncy chair or when lying down. We were not sure why, but it was
quite possible this was a position that enabled her to better see around
the hemangioma. As a result, her head became quite lopsided and she
also needed to be fitted for a special helmet which would help to reshape
her head. The helmet was to be worn for several hours a day and was
adjusted in the office every other week.
Throughout the entire first summer of Mei’s life, I would need
to make the 90 minute drive to Boston twice a week. Mei also had some
of her appointments in New Hampshire and on average she would have 3
appointments per week. I will be forever indebted to my mother Claire
and my Aunt Priscilla who worked together to care for my other three
children. I don’t know how I would have made it through this time
if it were not for their selfless support of my family. Their generosity
allowed me to focus on what Mei needed at that time and I can never
thank them enough for all they did.
Six months old
By the time Mei was seven months old, the hemanioma began to involute.
We watched with joy as a piece of the hemangioma beneath the outer corner
of her eye disappeared. Dr. Mihm and his team decided that it was time
to discontinue the Vincristine. We travelled to New York to see Dr.
Waner for a second opinion and he agreed that the hemangioma had completed
it’s growth phase and that we could stop chemo. He recommended
that we begin treating her with v-beam laser on a 4-6 week basis. We
decided to have her laser treatments performed in Boston with a physician
we had come to trust. We chose Dr. Richard (Rox) Anderson of the Massachusetts
General Hospital. In addition to being a professor of dermatology at
Harvard University, Dr. Anderson is a laser specialist and works with
many children with vascular malformations. We had met with Dr. Anderson
at the end of the summer when Mei was wrapping up her battle with the
lip ulcerations. Dr. Anderson was able to successfully heal her ulceration
with v-beam laser and has since treated the entire surface area of her
hemangioma 10 times under general anesthesia on an outpatient basis.
7 Months old
One year old
18 Months Old
At this time, Mei is 20 months old and is a normal, healthy thriving
toddler. She still has a splotchy flat red area on her cheek and lip,
which we continue to treat with v-beam laser. This month, she will have
her first treatment with a fraxel (frevental) laser which will smooth
the surface of her skin. Mei will need some plastic surgery in the future
to tighten up the skin on her cheek, which took on a “crinkly”
appearance after the hemangioma involuted. The surgeons will wait until
she is three years old to see how her face grows as some of the excess
skin may be taken up in the growth process. She will also need to have
some reconstructive work done on the left side of her upper lip as she
completely lost the lip line to scar tissue as a result of the ulceration.
I will always feel a deep debt of gratitude toward the doctors who have
helped us through Mei’s journey and I would love to pay it forward
by sharing my story and helping parents who find themselves on the same
path. Please feel free to contact me, should you need any further information
regarding our experience with physicians and treatments.
I have a few additional pieces of information which did not work their
way naturally into Mei’s birthmark story. I would like to include
them here as a sort of helpful hints section.
Teaching Hospitals: Most of us with children with
involved hemangiomas will find ourselves having our first experience
with teaching hospitals. Teaching hospitals are where the most innovative
medicine is generally practiced and the hierarchy of professionals can
be pretty confusing. Here is a quick description of the professionals
you may encounter:
Attending Physician: Your appointment will generally
be with an attending physican who is the “top dog”. Prior
to seeing the attending, you may be seen by one or more of the following:
Resident Physician: A resident has completed medical school, one year
of general internship and is spending the next 3-5 years learning and
practicing in a particular specialty.
Fellow: The fellow is usually the second in command
and has typically completed his residency. He is board certified but
has chosen to complete a specialized fellowship for two to three years.
Not all universities offer fellowship programs.
Practice Managers: The practice managers coordinate
appointments and treatments between you and the attending physician.
Although they are not nurses or doctors, the practice managers tend
to become lay experts and are a good source of information.
Wait Times: You should be prepared for long wait times
at teaching facilities. We would typically wait 1-2 hours for appointments
and have waited up to 4 hours. There are many reasons why this happens.
These hospitals often act as a magnet facility whose physicians take
over cases no one else wants to touch. Patients often arrive on an emergency
basis before their paperwork. Without their paperwork, the practice
managers and doctors have a difficult time estimating how long appointments
will actually take. If your office is connected to a trauma center also,
your doctor may need to attend to an unexpected emergency. It is wise
to pack accordingly for your appointments as a one hour appointment
could easily turn into a four hour ordeal.
Documenting: You should keep a clear record of your
child’s treatment dates and the start and stop dates of drug therapies.
Also, you should document hemangioma growth regularly with photos and
bring photos with you to every appointment. You may want to have extra
copies made as doctors often ask to keep your photos for their records.
Anesthesia: Having your child put under anesthesia
can be frightening. I would like to pass along a statistic that a surgeon
was kind enough to share with me. He informed me that the 90 minute
drive to the hospital was statistically more dangerous than the anesthesia
itself. He said that once I got to the hospital, the most dangerous
part of my day was over.
Birthmark.org: This is a great website for information
for both parents and your general pediatrician.
Answering Children’s Questions: You should be
prepared to answer the inevitable questions children have about your
child’s hemangioma. I was fortunate to have had an interevent
with a man who had a port wine stain in a supermarket five years prior.
This man had a very child-friendly way to explain his birthmark to my
then 3 year old daughter and I used much of the content of his response.
My response would generally sound something like this: “I heard
you ask your mother about my daughter’s face. I’d like to
tell you all about it. Would you like to know about her? Her name is
Mei and she has a hemangioma. This is just the way she was born and
she does not have a boo-boo. It doesn’t hurt her and it doesn’t
bleed. She doesn’t even know she has it because she is just a
baby. She has very good doctors who help her by giving her medicine
and shining a special light on her red spot that helps it to go away.
It gets a little bit smaller every day and one day it will disappear.
Does that answer your question?”