Lexi's Nose

Our youngest daughter Lexi has been diagnosed with a nasal tip hemangioma. I would quickly like to share with you what we learned at the Children's Hospital on Friday.  This is the reader's digest version of the handout that was provided to us by Alberta Health Services.

What is a hemangioma?

A hemangioma is a type of birthmark made up of blood vessels that grow quickly.
Hemangiomas:
- can look like red raised spots on the skin
- are sometimes present at birth
- are benign (not cancer) growths
- can be deeper in the skin and appear blue (like Lexi's)
- are seen three times more often in girls than boys
- are most often on the head and neck (80 percent of the time)
- usually apprear in the first few weeks of life

What causes hemangiomas?

The cause is unknown. Ed and I didn't do anything to cause it.  I didn't eat or do anything when I pregnant that would have caused the hemangioma.

What will her nose look like?

Hemaniomas go through stages where they grow and shrink.  There is no way to predict how big the birthmark will grow.  Some can be so small that you don't notice them, while others can be quite large.

Typically after one year the hemangioma is done growing and will begin to shrink slowly.  By 5 years 50 percent of hemangiomas have finshed their shrinking phase.  By seven years 70 percent are finished shrinking.  Some hemangiomas can take 3-5 years longer to finish their shirnking phase. 

What is the treatment for hemangiomas?

Over 90 percent of hemangiomas never cause a problem and/or need treatment.  Some children might need treatment right away.  It depends on where the hemangioma is and how big it is.

There are three types of treatment for a hemangioma:
1. Drug therapy can sometimes stop the growth phase and start the shrinking phase.
2. Surgery to remove the hemangioma.  Sometimes more than one surgery is required.
3. Laser therapy; a strong beam of light goes through the skin and kills the abnormal blood vessels.  It doesn't hurt the other structures in the skin.

How did we know what it was?

We noticed that the tip of Lexi's nose was a bit blue when she was about two weeks old.  I figured it was a superficial vein and didn't think much about it.  It started to grow after that but it did it so slowly that I didn't notice that it was getting any larger than normal. 

When I took Lexi for her 6 week check-up our family doctor thought that it might be her Mongolian spot.  We thought that it would be odd for it to show up on her face.  It wasn't until I took Lexi for her 2 month shots that two of the nurses at the Health Unit suggested that it was a hemangioma.  I still wasn't too concerned about it.

After I took Lexi home for the next two to three days I thought about it more and more.  I looked at newborn pictures and realized just how much her nose had changed.  Ed and I did some research on the internet and found Sam's Story.  We agreed that his nose looked a lot like Lexi's. 

I made an appointment with my family doctor for the following week.  He agreed on the diagnosis and then referred Lexi to the Vascular Birthmark Clinic at the Alberta Children's Hospital.  Two and a half weeks later we were seen there by a peditrican and a plastic surgeon.  Both agreed that it was a hemangioma. 

Since the hemangioma was caught so early and it's not interferring with her breathing we chose the drug route.  We were given Atenolol which is a beta-blocker given to reduce blood pressure.  The dose that Lexi is receiving is so small that it shouldn't effect her blood pressure.  They are unsure of how the beta-blockers work to slow the growth, all they know it that the results have been great.  We started Lexi on it on Sunday and her nose has already become less blue.

The staff at the hospital were fantastic.  Lexi got her picture taken and everyone was so kind and gentle as they assessed our baby girl.  We will also be going back monthly for follow-up appointments.

Here are some pictures Lexi's nose:

Lexi on her birthday

one week old

two weeks old

8 weeks old.  You can start to see here that the end of her nose has become quite rounded and blue tinged.

13 weeks old it has grown quite a bit by now.  This was taken the day before we went to vascular birthmark clinic.

This is Lexi after two days of treatment.  Her nose still looks blue but is less than before.

This is our story.  I will be sure to keep you updated on our progress.