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: 

A Complete 180

Today, Lily was supposed to have surgery to remove her hemangioma.

We were assured that this was not a "major" surgery, although, to us, any surgery would be serious. Over the last week and a half, we prepared ourselves for the worst and hoped for the best. We had the typical concerns and worries: would she react to anesthesia? would she bleed too much? what if the unthinkable happens? We were not thrilled by the thought of her going under the knife by any means; however, at the urging of the neurosurgeon, we came to understand that this "tumor" was something that needed to excised promptly. He gave us three primary reasons: the tumor is fast growing and could affect her vision, the size of the hemangioma is already distorting her eyebrow, and cosmetically, if would be more "appropriate" to remove the bump than to let it continue to grow.

With these things pointed out to us, we were in agreement. We did not want our beautiful little girl to ever even have the possibility of losing her vision. We also are very tired of going into public and having people comment, "Oh! Did she bump her head?" Every time someone asks me this, I feel frustrated. After all, she's not even four months old--she's not mobile, so how would she bump her head? Unless, of course, I somehow dropped her or something...

So, having accepted surgery, we began to look forward to her no longer having a big bump on her brow. I did not feel like I was prepared to see her in the recovery room after surgery, possibly in pain and attached to wires and tubes, but we felt like our options had been explained and this was the best possible course of action.

Yesterday, we packed up the car and drove nearly four hours to Denver. We arrived at Children's Hospital and took Lily to the lab, where they drew four vials of blood to cross type her in case she needed a transfusion. An hour later, we were back up in the neurosurgery department, anxiously awaiting the arrival of our neurosurgeon. We were told that we would also be meeting with the plastic surgeon today, and he would determine if Lily needed a CT to see if the hemangioma had distorted her bone.

After waiting and waiting, the two doctors and a nurse finally entered the room. The plastic surgeon strode up to Lily and looked at her bump and said, "Yup, this is exactly what I thought it was--a hemangioma. Doing surgery at her age would be very risky--the thing would bleed like crazy." He then explained the natural progression of a hemangioma. He said that, by 9 months it would probably stop getting bigger and slowly start the process of involution, where it would recede back into the skin. By 5, this process is usually complete. Because of this, he said he would not even consider surgery on her until she was at least a first grader. He said that she may need a minor cosmetic surgery to repair loose or stretched skin. Then he patted her on the head and said, "She'll be fine. She's a pretty baby."

I was in shock. We were not expecting this. The neurosurgeon was apologetic, although we were never really detailed about why he wanted to operate immediately only to have someone tell us otherwise. We were also frustrated. This was the fifth doctor we had seen and ALL of them had given us a different diagnosis or a different method of treating it--how do we know who is right? We are reminding ourselves that we took her to the best hospital, and the plastic surgeon stated that he had seen these for the past 40 years. He did recommend that we make an appointment with the vascular malformation clinic, and said that if it got bigger it could be treated with steroids (which we don't particularly like). He said that at this point, however, he would not do anything to treat her.

We are tired. Tired of doctors and tired of travelling. We were mad that we had travelled so far and even more angry that they failed to stop the lab techs from drawing her blood if they knew the surgery was going to be cancelled. We decided we aren't going to waste any more time on this and put Lily through appointment after appointment. I feel a complex range of emotions--disappointed that she still has have a bump on her head, relieved that she didn't have surgery, worried about how children will treat her when she gets older...eventually we will come to terms with this.

Going to the Children's Hospital and seeing many sick children reminded us that we should be grateful that Lily does not have something much more serious. So many things could have happened, so, at least the one thing that did happen is not a major health concern. We seek solace in this fact, along with the knowledge that we have a very beautiful (despite the bump), healthy, and happy baby girl.

Medical Update

On Thursday, May 14, we took Lily out to The Children's Hospital in Denver for her MRI. She is truly a little trooper! The MRI itself was not a wonderful experience. Lily was "supposed" to take a bottle and then sleep through her MRI--well, she wasn't very sleepy :) Luckily for us, the MRI tech had another patient after Lily, and allowed us to try again afterwards. About 5 minutes before he came back (it was around 10:00 PM) she finally crashed out and, to our amazement, slept through the 25 minute test!! It was the nosiest machine...only a baby could sleep through something like that!

We had our consult with the neurosurgeon the next day. He has determined that what we thought was a cyst, isn't. The MRI showed that her bump is actually a solid mass, so he believes that she most likely (although he can't be 100% positive) has a deep tissue or cavernous hemangioma. Essentially, this is a tumor that affects the blood vessels, which explains why her bump has been changing colors and growing so rapidly. Most hemangiomas are outside the skin and look strawberry colored--these don't typically require surgery. However, because her's is deep and located near the eye--and growing so quickly--the neurosurgeon recommended that we do surgery as soon as possible. He has assured us that it is not a "major" surgery, since the hemangioma does not go through the skull into the brain, and the biggest risk is bleeding, so they will have a pint of blood on hand in case she needs a transfusion. A plastic surgeon will assist in the surgery and assures us that scarring will be minimal, so we are hoping for the best. For those of you who would like to read more, here is a link: http://www.birthmark.org/hemangiomas.php

Her surgery is scheduled for 7:30 am on May 28th. Keep her in your thoughts...

A Small "Bump" in the Road

Hello again! A LOT of things have happened since the last time I posted. Lily is getting SO big and cuter by the day! (If that is even possible :) )
I know I had mentioned that she had a bump on her head the last time, which her doctor believed to be a sebaceous cyst. He thought the bump would eventually go away on its own, but we noticed that it seemed to be getting bigger and bigger. So, being the worry-warts that we are, we decided to make an appointment with a dermatologist in Cheyenne to make sure that it would go away and that it was correctly diagnosed. We had done our own research and were convinced that it was a different kind of cyst.
The day we travelled to Cheyenne, they were getting slammed with a blizzard. There was probably 8 inches of slushy snow on the roads in town--scary! Thankfully, we all arrived in one piece. :) The dermatologist confirmed our concerns, and told us that the cyst on Lily's eyebrow is actually a dermoid cyst, which is more common than sebaceous cysts in children. Dermoid cysts are composed of skin and hair cells, and, because of an infection risk, they must always be surgically removed.
We were not too surprised, although unhappy, to hear this news. The dermatologist did, however, inform us that there is a slight (although unlikely) chance that, since the cyst is near her midline, it could be connected to her brain. Therefore, we had to schedule an MRI at the Denver Children's Hospital to make sure. If this is the case, a neurosurgeon, rather than a plastic surgeon, will do the procedure. We have an appointment for the MRI on May 14, with a doctor consultation the next day. Regardless, because of a the anesthesia risk, the surgery will be done in Denver. They will also probably wait until she is 6 or 9 months old to do it.

Here is a picture of her cyst

In other (happy) news, we have officially made the transition to Scottsbluff. We moved in last Thursday, and are finally all settled in! It feels so nice to be able to live in town and run errands quickly!

Graduation is now 9 days away--thank goodness! I will be graduating Summa Cum Laude (which means I have a 4.0) on Saturday, May 9, 2009, at 10:00 am in Chadron. It has been a long-awaited day!! I was also pleasantly surprised to find out that an article I submitted to a school publication called "Outside the Lines" is being published and placed 3rd (which is nice, because there is a cash prize!). Other than that, I am just living day by day, taking care of the little one and finishing up with finals. My grandma from Texas will be here for graduation and we can't wait for her to finally meet Miss Lily!

Brian is also coming to the end of his teaching year. His final week is the week after my graduation. He will be "done" on the 15th, and then have a few teacher days the following week. On May 23 we will all be flying to Ohio, along with Grandma Barb, to visit Brian's brother Darin and his wife Lisa. Then--BRING ON SUMMER BREAK!!!

Here are some more pictures to enjoy:

Pretty girl!

Lily, right before a big smile! (Smiles are hard to get on camera)

Her, realizing that I am trying to get her to smile for the camera--no way, Mom.

She will always be Daddy's precious girl!