We had our first experience with a hemangioma several years ago when a friend's little girl developed one on her head. To us it was no big deal once we learned about what it was. I remember the mother telling us that little kids would always ask, "What's that fing (kid speak for 'thing') on her head?" Kids are so innocent with their questioning but adults can be so judgy. They came to love this growth of blood vessels and gave it a name as well :) Now it no longer shows and life has gone on normally. Another child we know had several surgeries for hers but again, all is well.
When Rachel was born she had a bruise near her hairline which the nurse thought was from birth (she had 2 broken blood vessels in her eyes....must have been a traumatic birth for her I guess!). Several weeks later it started to get darker and slightly raised (spot on the right) and then we knew what we had going on. During that time she also developed a second spot on her head (spot on the left) as well as some staining on the lower lip. I thought the lip was a blister from so much nursing but it didn't go away. It wasn't getting any bigger either, though.
Then, I had an emotionally difficult day in November:
-Jackson got out of his room during nap time, went into R's room where she was sleeping in the crib, climbed in with her and brought a bottle of spray and wash with him...
-I had Rachel's 1 month appt where we assessed the hemangiomas, talked about how the one on her lip could be a hemangioma and realized that it could be an emergent condition if it got big and impaired feeding
-Rachel's face was full of baby acne and just looked so uncomfortable
That evening, I called mom and expressed some emotions and fears. My prayer for Rachel from before she was born was that she would know that she is loved by God unconditionally and especially that she will not be concerned with image. Talking through things with mom and a good friend, however, I realized that it needs to be my prayer for myself in how I view Rachel. Yes, I do worry that these could cause some other damage (esp the one on the lip), but more than that I was annoyed that other people were going to judge her and I would constantly have to answer the question, "What's that fing on her head?" I was worried that people would not think that she is beautiful or they would be so focused on her hemangiomas that they would miss her sparkling blue eyes or the way her lip curls up when she gives a full toothless grin. I wanted her to be able to brush her hair without big lumps getting in the way of the brush. I didn't want either of us to feel like we had to cover them up with hats and bows for the next 5-10 years of her life.
After several weeks of prayer and some good laughs from the mother who named her daughter's lump, I had finally become at peace with her spots. Jackson started to ask about them and I was telling him that they were God's special mark on Rachel, a special part of what makes her amazing. He would rub them gently and even kiss them too :)
Per our physician's recommendation, we monitored the lower lip staining and when it got thicker we decided to get Rachel into a Vascular Clinic at CHKD on Friday the 21st. We were only concerned about the lower lip stain being a true hemangioma and getting large enough to impair feeding. We met with 3 physicians and a resident who measured, photographed, asked questions, felt them and discussed with each other and me.
A hemagioma is a collection of blood vessels that can grow anywhere on the body. They are more common in girls and I thought it was less common to have more than one, but today they all said it's very common to have multiples. They usually grown for up to 12 months (wider and/or taller) and then will recede over the next 5-10 years. They will typically disappear and lay flat but they can also cause pocketing of skin or reduced hair growth in the area. They like to monitor the ones on lips because they can ulcerate and become problematic. The physicians are all doubtful that hers will, based on the current size and look of it. But, we are keeping an eye on it. It was a reassuring visit in which we decided to treat all of the spots with topical beta blocker cream to reduce the size, coloration and hopefully to slow growth rate or reduce the current size of them.
So, we'll be on a 2 month course of topicals and then have a follow-up with our team of docs to see how we will proceed from there. Please keep little Rachel in your prayers. Pray that that hemangioma on the lower lip will not progress and that it will not limit her feeding in any way. Pray that it will not become ulcerated.
Feel free to ask us about those "fings on her head and lip". We're also taking suggestions of names for her three special marks :)