Over the last year, we were in a constant state of receiving advise from everyone. Should we have the nevus removed, should we leave it alone, and just watch for signs of change, what was best for our daughter? Ultimately, we leaned toward having the nevus removed for several reasons:
1. Any increased chance of cancer is too high. Even if it was only .5% higher, it was too much. Having to keep her inside so that she didn't get exposed to the sun was not really an option, but would contribute to the higher risk.
2. She is a girl. Having 3 older sisters who all wear shorts, capris, skirts, and flip flops, being different, we felt, would be a stumbling block to Addison as she got older. Eventually, she would have noticed. Had she been a boy, the choice might have been different.
3. The nevus skin seemed to be a little more sensitive to everything. When Addison would drop something, or run into something with that foot, it was immediate, hurting tears. We are hoping that removal will decrease the sensitivity.
4. It is really hairy. This draws more attention to the leg, and more questions for us to answer.
5. Kids (and adults) can be cruel sometimes. We didn't mind so much the questions about what was on her leg from young kids, or the innocent questions, the ones that were truly interested, and cared. But there were occasions when people would come up to her and start to say "Look, what a cute...Oh!" And walk away. Fear of damage to her self-esteem later in life played a small part in our decision.
And so, we waited until her year appointments with the dermatologist and plastic surgeon.
Friday, January 16, 2009
Choosing a Plastic Surgeon
We were given the cards for three plastic surgeons that have priviledges at Primary Children's Medical Center. I don't remember the names of two of them, what I do remember is that their cards had websites on them for more information, so I immediately looked them up as part of my research. I was concerned by both of the websites, as they didn't list any information regarding children at all. They dealt mainly with breast augumentation. I wanted my baby to be seen by someone that focused on children, so we choose to make an appointment with Dr Faizi Siddiqi, who didn't have a website, but whose clinic address was either at the University of Utah Medical Center - attached to Primary Children's, or at Primary Children's Hospital itself. We made an appointment for about a month out.
Will took time off to go to the appointment with us, so that we got the same information. We waited for what seemed an excessive amount of time, almost an hour after our appointment. For those of you that know me, you know that is an extremely dark mark for the doctor. I don't like people making me wait. However, as we were sitting in the waiting room, a mother came in with her daughter and sat across from us. People at the hospital, we have found, are more than happy to talk to you and discuss doctors, procedures, what they have been through, etc. This woman was no different. Her daughter's skull had fused too early, and Dr. Siddiqi had been the one to fix it. She said that she had never been to an appointment where she didn't have to wait, but that he was well worth the wait. It gave us another something to consider.
We were finally taken back to an exam room, and Dr. Siddiqi came in. Addison was 2 or 3 months old at this time, and because it was summer, she was wearing a short outfit. Upon entering the room, Dr. Siddiqi sat down across from us and said, "Oh, I see the problem. This is how we will fix it. We will use tissue expanders to grow her own skin, then graft it in place of the nevus." He was very confident and reassuring. He then asked, "Now, what questions do you have that I can answer." We asked a few general questions, not really knowing what we should be asking. Dr. Siddiqi informed us that the best time to start would be when she was two, and asked us to check back in a year. When he was sure that we didn't have any more questions, he thanked us for coming, apologized for the wait, and left the room. It was then that we realized why the wait was so extensive, and were comforted by it. This doctor truly cared about the patients he was seeing, and their families. We had made the right choice.
Will took time off to go to the appointment with us, so that we got the same information. We waited for what seemed an excessive amount of time, almost an hour after our appointment. For those of you that know me, you know that is an extremely dark mark for the doctor. I don't like people making me wait. However, as we were sitting in the waiting room, a mother came in with her daughter and sat across from us. People at the hospital, we have found, are more than happy to talk to you and discuss doctors, procedures, what they have been through, etc. This woman was no different. Her daughter's skull had fused too early, and Dr. Siddiqi had been the one to fix it. She said that she had never been to an appointment where she didn't have to wait, but that he was well worth the wait. It gave us another something to consider.
We were finally taken back to an exam room, and Dr. Siddiqi came in. Addison was 2 or 3 months old at this time, and because it was summer, she was wearing a short outfit. Upon entering the room, Dr. Siddiqi sat down across from us and said, "Oh, I see the problem. This is how we will fix it. We will use tissue expanders to grow her own skin, then graft it in place of the nevus." He was very confident and reassuring. He then asked, "Now, what questions do you have that I can answer." We asked a few general questions, not really knowing what we should be asking. Dr. Siddiqi informed us that the best time to start would be when she was two, and asked us to check back in a year. When he was sure that we didn't have any more questions, he thanked us for coming, apologized for the wait, and left the room. It was then that we realized why the wait was so extensive, and were comforted by it. This doctor truly cared about the patients he was seeing, and their families. We had made the right choice.
History
On April 17, 2007, Addison was born via C-section. When she was pulled out, the doctors all took a gasp of breath, followed by an audible "Oh No!" Then a sigh of relief and "Oh, she is moving her toes, it is fine." All of this I heard from behind a drape that is customarily placed at about neck level. Addison's dad looked at me and explained, "Her leg is black." After a thorough exam, she was pronounced healthy, and we waited for her pediatrician to see her.
The next day, Dr. Bruce Montgomerie, her pediatrician came in. He again checked her over, and pronounced her healthy. He instructed us to see the dermatologist, Dr. Susuan Vanderhooft, at Primary Children's Medical Center, to obtain further information on Addison's leg - which he assumed was just a birthmark, but had no real expertise on them. He also indicated that the wait to see her would be considerable, so to make the appointment as soon as possible. I was able to make the appointment for two weeks later.
Dr. Vanderhooft examined Addison and diagnosed her with a Giant Congenital Nevus, and many satellites (other moles on her body). She reassured us that while Addison did have a slightly higher chance of getting skin cancer, it was not that great. We were also given options for removal or watching the nevus, contact information for support groups, and names of pediatriac plastic surgeons. She also asked to get an opinion from the plastic surgeon before making any decisions.
This blog is being set up to assist others that are making the same journey that we are on, whether the decision has been made to remove, or simply watch to see what happens. Our hope is that through our experience, others will be reassured and know that they are not alone. Your comments are greatly appreciated.
The next day, Dr. Bruce Montgomerie, her pediatrician came in. He again checked her over, and pronounced her healthy. He instructed us to see the dermatologist, Dr. Susuan Vanderhooft, at Primary Children's Medical Center, to obtain further information on Addison's leg - which he assumed was just a birthmark, but had no real expertise on them. He also indicated that the wait to see her would be considerable, so to make the appointment as soon as possible. I was able to make the appointment for two weeks later.
Dr. Vanderhooft examined Addison and diagnosed her with a Giant Congenital Nevus, and many satellites (other moles on her body). She reassured us that while Addison did have a slightly higher chance of getting skin cancer, it was not that great. We were also given options for removal or watching the nevus, contact information for support groups, and names of pediatriac plastic surgeons. She also asked to get an opinion from the plastic surgeon before making any decisions.
This blog is being set up to assist others that are making the same journey that we are on, whether the decision has been made to remove, or simply watch to see what happens. Our hope is that through our experience, others will be reassured and know that they are not alone. Your comments are greatly appreciated.
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