What the heck is a Hemangioma??

One of the most unimaginable things that can happen is a potentially serious medical diagnosis from your baby’s doctor. I never knew just how true this is until it happened to us.

Approximately 2 months after Emma was born we noticed that the tip of her nose was turning a blueish color and getting bigger. At first we thought it was the lighting conditions or our imagination. As the days went by it got worse. The skin was definitely stretching and her nose was getting darker and rounder.

We went to the pediatrician who stated that it was probably a hemangioma. A what?!?Although this doctor diagnosed the condition correctly, the manner in which she did was ridiculous..

She stated, correctly, that it was a tumor (similiar to those red birthmarks except that Emma’s was under the skin) that a low % of mostly female white babies are affected with. They tend to show up several months after birth and grow for the first 18-24 months of life. They then slooowly shrink and are usually gone by 6-10 years old. She made light of it and said that it is not dangerous and then proceeded to show us pictures of children with hemangiomas on various parts of their faces.

Well, I saw some scary monster movies in my time and some of these pictures were on par with them. There were some poor kids with golf ball size tumors on their faces. Well, to make light of this was very poor judgement by the Dr. We were facing the prospect of Emma’s nose getting to be the size of a golf ball with the potential damage that it would cause and then Emma having to live with it for possibly the next 6-10 years?? We thought of all the looks and comments that people would make to her and then the things that other children might do when she went to school…

Melissa took her to another doctor, I believe a child dermatologist, for a second opinion. This was an older man who stated pretty much the same thing that the other doctor did albeit in a more understanding manner. We began to think that we would have to accept the blue growing nose on the front of our beautiful daughter and all the things that would come with it.

We then talked to different people and did some research online about hemangiomas. A friend recommended Childrens Memorial for a third opinion. **After this experience we have come to the conclusion that you should always get a 2nd or even a 3rd opinion from the experts that specialize in your concern(Stay at home Dad tip).</em>We took Emma downtown and eventually began treatment by a doctor that specializes in these types of conditions. This doctor was very empathetic and recommended an aggressive treatment that involved steriods. The steroids were primarily oral but there were a few instances where Emma had to get injections directly into the tip of her nose. Talk about an awful exerience! The Dr. and nurses were very fast doing this, however. The nurse would wrap Emma in a small sheet rendering her arms useless and then would be lied down and held as the Dr. injected–very quick. The first time, Emma didn’t know what had hit her. Future visits to this Dr. and her regular pediatrician proved to be much, much more difficult as she was extremely afraid that the injection was coming again…The Dr. advised us that if the tumor got big enough it could hinder Emma’s breathing and damage the structure of her nose which would probably require plastic surgery later on.

We went with her recommendations and began to give Emma oral steroids. Now, this medication comes with side effects that she had told us about. The main effect was increased appetite and weight gain. She would be at increased risk for infections and getting sick and we were advised to wash our hands constantly–this has been very good for me since I haven’t had one of my trademark skyrocket fevers in over 2 years. Emma also became much more restless. Her growth as far as height would slow down but would catch back up after she stopped taking steroids.

Emma’s weight went off the growth charts(over 100%) but she still grew height wise just not as fast. Emma ate bottles about every two hours and didn’t sleep as well. The result was that yje tumor stopped growing and eventually shrank down. Her height and weight are back to normal ranges and all of her rolls are just about gone. Looking back at the pictures of her it is hard to believe how fat she had gotten. It looks uncomfortable for her but she was always a happy baby, smiling and laughing all the time even though she was such a chunker.

Her nose still has a slightly darker tint but that should disappear over the next few years or so. We go back for a checkup soon.

This experience gave me great respect and empathy for anyone who has to go through much more serious medical conditions with their children. I can’t imagine having to go through something much worse.


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