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Share Your Story and Raise Awareness
How did you become involved with VBF? Why do you feel it’s important to raise awareness for vascular birthmarks and the related syndromes? Please share your story with us. Please email your photos and story to VBF at firstname.lastname@example.org
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.
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.
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.
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
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.
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.
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.
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 further still.
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.
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.
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.
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 (fractional) 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 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:
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 interaction 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?”
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Tyler Salvador and his twin sister, Shaine.