The "Bump": A Hemangioma Update

Nearly a year ago, we were making endless and exhausting visits to doctors. When Lily was 7 weeks old, we noticed a small bump on her head. We were not sure what it was at first--I thought maybe she had been bitten by a spider or, maybe, she'd somehow bumped her head on one of our shoulders. However, within a week, this "bump" became quite swollen. Here is an early picture of the bump on March 26, 2009:

About a week later, we took her to the doctor, because the bump did not appear to be looking any better. It was a Saturday, and we had driven down to Scottsbluff from Hemingford (about an hour drive), so we took her to Urgent Care and saw the doctor that was on-call. He "diagnosed" her with an infected hair follicle and prescribed an antibiotic to clear it up. Within the week, Lily  had severe diarrhea and was subsequently diagnosed with C-difficle colitis, a result of all of the "good" bacteria being killed in her intestines by the antibiotic.

To make matters worse, when we took her to her regular GP, he was certain the bump was not an infected hair follicle. He believed it was a sebaceous cyst that would go away on its own. We, however, were beginning to feel more and more uncomfortable. Here is a picture of it on April 17, 2009:

Not believing that this was a sebaceous cyst that would just "go away" we decided to make an appointment with a dermatologist in Cheyenne, Wyoming. We drove through a horrific Spring snow storm to attend this appointment, almost missing it because the weather was so terrible. We knew that we would go crazy if we didn't receive some answers. And soon.

The dermatologist examined Lily and said she believed Lily had a dermoid cyst--a cyst filled with fluid, hair, bone, etc.. She said that, because it was close to the midline of her face, there was a slight chance that the cyst could be leading to her brain. If that was the case, she would need surgery.

We were, obviously, terrified. We hadn't expected anything like this. The next step was to make an appointment at the Children's Hospital in Denver, Colorado, for an MRI. The MRI itself was a fiasco. The tech signed us up for a "feed and sleep" so, instead of anesthetizing Lily (which we definitely didn't want to do), they thought that she was young enough (3 months, at this point) to eat and then get sleepy enough to sleep through the MRI. Of course, she was not tired after her feeding (we thought we'd lucked out, because she had slept the entire 4 hours to Denver). Our appointment was at 7:00 pm. Finally, at 10:00, Lily crashed out and we were able to complete the (very loud) scan. Thankfully, the tech was very flexible with us, because I was on the verge of bursting into tears after hours of rocking her and trying to get her to sleep! Not to mention, we would have had to reschedule for a different day--and make the drive all over again.

The next day, we met with the neurosurgeon. To make a long story short, he informed us that the "cyst" was actually a tumor--most likely a hemangioma, and she would need it removed as soon as possible.

We. were. shocked.

We hadn't done our research on tumors--just cysts. We went home and the surgery was scheduled for a week and a half later. I tried not to think about it. Upon our arrival the day before the surgery, the surgeon entered the room for Lily's pre-op appointment. This time, he brought the plastic surgeon, who is also a member of the vascular malformation clinic, into the room.

The plastic surgeon took one look at Lily and determined that she did not need surgery--he said that it was far too dangerous because of all of the blood vessels involved, and that they typically resolve on their own. A hemangioma, moreover, is a fairly common birthmark (as many as 1 out 10 infants had them), often called a "strawberry mark" when located on the skin. Lily's, however, was more rare (1 out of 100) and was a deep hemangioma, located under the skin.

Here she is on May 30, 2009, right after they cancelled her surgery.

                                     

Here is a picture of her on June 30, 2009:

I was shocked by the doctor's statement--confused about why a surgery was scheduled in the first place and worried that they might have it wrong--again. I went home and did research...a lot of research. I found an organization that had an "experts" page and gave them all of our information.

To my surprise, I was contacted by two DOCTORS--not nurses--within a few days. One doctor informed me that, because of the hemangioma's location (near the eye) and the likelihood that it would continue growing, we should have it removed immediately. Another, who was the "number one" expert in the field, recommended an experimental medication or surgery.

I was confused and panicked. I was terrified she'd go blind or end up with a lazy eye (which the doctor told me was a real possibility), tired of people commenting on her "bruise" and looking at me like I might have dropped my child, and torn that my baby had to go through this. I did not like the idea that she'd have this thing on her head until she was in late elementary school and would possibly be teased by children at school--but I did not like the idea of flying to New York or Boston for surgery or giving her a medication that is not meant to be given to infants.

Finally, my dear husband urged me to stop doing all the research. He said we need to take her to an opthamalogist and have her vision checked and decide if it was a real threat.

It wasn't. So I took a breath.

A few months later, in September, we took her back to Children's to the Vascular Malformation Clinic. They told us that the normal progression of a hemangioma was this: It emerged and grew very quickly, peaking in size by age one to eighteen months. By age two, we would notice some involution (where it would go back into the skin), although this would be a very slow process. Most children notice a significant change by age 5, while almost all notice complete involution by age 10. By kindergarten, the plastic surgeon said, Lily might need a small reconstructive surgery to repair her eyebrow--which had been stretched and disfigured.

I told them about all of the information I'd been given by the "experts" and asked why we were receiving conflicting information. They knew of the doctors that I spoke of, and informed me that they would cut anything that moved...which made me feel relieved that I did not push for an unnecessary surgery (with that said, however, I do realize that these same doctors may very well operate on children when it is deemed medically necessary--that is an entirely different story. For Lily, her bump was more of a cosmetic issue and it did not pose any actual risk to her vision or overall health).

We felt better. We could breathe. We could stop going to doctors and fearing the worst. And, together, we could wait this out and love Lily for the beautiful and amazing little girl she is. And, to our amazement, the hemangioma began to get smaller and smaller....

Here she is on December 5, 2009, at 10 months:

And at 14 months on April 26, 2010:

And, finally, on May 3, 2010, a day away from her 15th month birthday:

It is practically gone! And we waited--no surgery. What should have happened at age 5 happened by at age 1. Thank goodness we were patient and believed in each other...we are a much stronger family because of it!!

If you have any questions about our journey or are feeling conflicted about your own, please leave me a comment. I'd love to provide any kind of support I can. . .

*******UPDATE*******

Here we are now, in 2015, and Lily is now 6! The hemangioma nightmare seems SO long ago and, honestly, it is hard to remember how stressful of a journey it was now, considering we ended up doing nothing and she turned out absolutely fine! Here is an updated 6 year old photo of Lily: