Hemangiomas are a formation of blood cells that develop anywhere on the body, and look like big read bumps (Mayo, n.d). My daughter developed several after she was born, two on her back and one huge one on her face. The one on her face was so big and disfiguring that we worried about her life as she progressed throughout school. We immediately took her to world renowned Vanderbilt Children’s hospital, and we were told to wait it out and hopefully it got smaller by the time she was five. I refused, and did extensive research on this topic to get her help. I now want to share my story with other parents and help them seek help, and to raise money for those who cannot afford to get treatment.
After two weeks it turned red and was diagnosed as a hemangioma. I surfed the internet and scared myself to death with what might happen. Googling hemangiomas is terrifying after the diagnosis. There are many extreme cases showing how disfigured these things make people, and it is scary as a new parent to find stories like the one in the video below. This poor boy “Fox” suffered, and I want to make sure that I share my journey in order to help people seek treatment (Fox, 2009).
After seeing images like this I decided that I was not going to wait and see what would happen. I did extensive research and found that Dr. Waner, an international expert in the field, the first advocate for early intervention, and he was located in NYC (Vascular Birthmark Institution, n.d.). Upon further investigation, I found that he actually started his practice at Arkansas Children’s hospital who specialize in vascular birthmarks, and were located about five hours from us. I immediately called them, sent them pictures, and we met with them within three days. Our daughter began treatment at 11 weeks old, after steroid injections and a laser treatments failed we were accepted to try a new treatment program.
Our daughter became one of 11 babies to test out the use of propranolol (Beta Blockers) on infantile hemangiomas. Propanol was typically used for managing high blood pressure, but researchers accidently found that is also significantly reduced the size of hemangiomas (DermNet NZ, 2014). Within days it started to work wonders, and by week two the mass decreased by 50%, and by three months into the program it reduced by 70%. The slide show below will show the life and death of the hemangioma.
Finally, on Friday June 5, 2009 the last of the forehead hemagnioma was surgically removed. She was such a champ and did a wonderful job. Dr. Richter and our nurse Emily Copeland did an amazing job helping us cope and curing our child. It is amazing to now see our 7 year old, and not be able to tell that she could have had something so disfiguring.
We wanted to share our journey to show our appreciation for the help we received, and hopefully help others. This has taught me patience and persistence and brought Emily and Dr. Richter into our lives.
Addison’s tissue was used for research purposes, so she can continue to help others. We feel this isn’t enough and want to encourage people to donate to others who cannot afford the treatment we received. It is important to share this story, because the cure for this vascular anomaly came about through grants and private donors (Arkansas Children’s Hospital, n.d.).
For more information visit: http://www.hemangiomatreatment.org/before-after/
For donation opportunities visit: http://www.hemangiomatreatment.org/help-the-foundation/donate/
Arkansas Children’s Hospital. (n.d.). Research is Key to Healthy Children. Retrieved from Arkansas Children’s Hospital: http://achri.archildrens.org/researchers/richterg.html
DermNet NZ. (2014, September 23). Propranolol for Infantile Hemangioma. Retrieved from DermNet NZ: https://www.google.com/?gws_rd=ssl#q=propranolol+for+hemangiomas
Fox, E. (2009, January 24). Fox’s Birthmark. Hemangioma. Hemangioma – US. Retrieved from https://www.youtube.com/watch?v=zf8u6xO9eac
Mayo Clinic. (n.d.). Hemangioma – Mayo Clinic. Retrieved from http://www.mayoclinic.org/diseases-conditions/hemangioma/basics/definition/con-20028587
Vascular Birthmark Institution. (n.d.). Ask the Doctors. Retrieved from Vascular Birthmark Institution: https://www.vbiny.org/