While we were there at the hospital, fear started to set in because we didn't know anything about these things and what would happen, but God led us to a wonderful plastic surgeon, Dr. William Magee, who answered all our questions and helped relieve that fear.
Our anxiety started to rise again when the hemangiomas started to grow very rapidly. By the time she was 2 months old, you could not see Heather's lips because of the swelling of the hemangiomas. She had a massive case consisting of her mouth, neck, left ear, and right temporal area. Dr. Magee ordered an MRI when she was 4 months old to see what was going on under the neck and chest area. The night he called and said that he didn't know how she could breathe because the hemangiomas were around her airway and esophagus was very scary to us, but our faith in God and in Dr. Magee once again helped us to do whatever we needed to do.
On December 2, 1989, we took Heather to a specialist, Dr. Dion, whom Dr. Magee had recommended, up at the University of Virginia in Charlottesville, Virginia. They were planning on doing an embolization on the blood vessels around her airway and esophagus to hopefully open up her airway. There were problems along the way, but every time we thought the door was being shut God would step in and open it for us. Heather had two of the embolizations done, one at 4 months and one at 6 months old.
Dr. Magee had told us in the beginning that it might be five years before he would do anything, but with her life being threatened, he needed to do something. He had told us that time and patience were what we needed. We had asked him about steroids, but he did not want to do that. Dr. Magee said that the hemangiomas would start receding by the time she was a year old. That to us was very hard: seeing our baby look like she did and yet wanting to show her off to everyone. With the grade of God and the love and support of our family and friends, we never kept her from going anywhere we went or doing anything that we did. When she was a year old, the hemangiomas started shrinking on their own. Dr. Magee kept watching her and when she was 20 months old she had her first surgery.
Heather's
first and second surgeries were the biggest ones she has had. Dr. Magee
has basically been removing the excess skin and doing a little face lifting
on some of the areas. Heather has had eight surgeries now and is doing wonderfully!
She started school as normal and has even had surgeries during the school
year and made out great. Heather is 7 years old now and starting the second
grade. She doesn't seem to mind when people or kids ask her questions; she
just tells them that she has hemangiomas and that Dr. Magee is fixing her
up. She really does look good now and I can say that time and patience have
definitely paid off. As hard as it was to wait and let nature take its course
sometimes, it really was worth the wait.Heather has taken everything so wonderfully. She has done what needed to be done without fussing or complaining, knowing that Dr. Magee has her best interests in mind. Heather has been a real trooper through it all and knows that this is not the end yet. If it wasn't for the little bit of red that is still there on her right temporal area, you wouldn't know anything was wrong with her. My husband and I really had to lean on each other, and God, a lot through all of this and I think that it has really enriched our marriage. We also have an older daughter, Amanda, who was four when Heather was born and has really been a blessing through it all. She never complained and was a big help to us. She always did whatever was necessary so that we could tend to Heather, which was a lot in the beginning.
God and Dr. Magee were our biggest resources, but we did also read about the Vascular Birthmarks Foundation in a magazine. We wrote to them and they sent us information that was very helpful in explaining what hemangiomas were. They have a web site now at www.birthmark.org if anyone is interested. You may also e-mail us at Ivyhopkins@aol.com if you would like to share your story or ask questions.
Ivy and Christie Hopkins