17 month old girl w/upper lip hemangioma
My name is Ashley. Im the mother of Charlotte, a sweet, happy and beautiful 17 month old baby girl. Charlotte's hemangioma was slightly visable at birth. At first we thought her face was chapped or raw from nursing. At 5 weeks old Charlotte was admitted to our local hospital for RSV. We had a week long stay with constant oxygen. It was at that time we noticed the lip begin to change. We followed up with our amazing pediatrican who sent us to Wake Forest Baptisit Medical Center to see the pediatric plastic surgeon. Thats where she confirmed it was not a PWS but a hemangioma. She advised us to take the wait and see approach. Unfortunatly, that is what we did. It grew fast and continued to do so. We took her back around 10 month old and she advised us to have laser surgery. On Dec 6th we checked our precious baby into the hospital. She did wonderfully. But unfortunatly we never saw a difference. If anything, it has continued to thicken. Her lip is beginning to sag due to the weight of the hemangioma. The surgeon assured us we would see a difference by summer. Its July and we have seen no difference. We had a friend who has a PWS tell us about a dermotologist at Duke Medical who specializes in hemangiomas. Our appointment with him is in 2 weeks.
I guess I just wanted to share my story because I look at this site every day looking for an ounce of hope for my babygirl. I just want people to look at her without negative thoughts. Sometimes my husband and I feel so alone in dealing with this. Any advice, encouragement, stories, personal experience, etc you can share with me would be great.