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.
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One little girl's journey with a Giant Congenital Nevus.
Addison was born with a Giant Congenital Nevus on her left leg. The journey is a struggle. Decisions are hard. We hope that Addison's experience can help others dealing with the same issue. While we know that there are others that are more extreme, we hope that in sharing her story, we can provide support and encouragement. Leave a comment, let us know you've been here.
Things to remember
Speak up! You are your child's best advocate. You know them best and what works for them.
Be prepared to wait. Things come up - no need to be upset if you get bumped or pushed back. It won't help the situation.
Be prepared to wait. Things come up - no need to be upset if you get bumped or pushed back. It won't help the situation.
Addi's surgery packing list
When Addi goes in for surgery, we always take the following:
New pair of pajamas
Her favorite 2 blankets - just in case there is blood or throw up
A new toy for after surgery
M&Ms - Addi's candy of choice
A good book - the wait can ba agonizing with nothing to do.
Laptop computer - broadcast updates are so much easier
New pair of pajamas
Her favorite 2 blankets - just in case there is blood or throw up
A new toy for after surgery
M&Ms - Addi's candy of choice
A good book - the wait can ba agonizing with nothing to do.
Laptop computer - broadcast updates are so much easier
Hi!
ReplyDeleteI hope you get this comment - I'm not sure where else to contact you!
I am SO excited that I found your blog. It's an answer to a prayer. My daughter has been seeing Dr. Siddiqi! We also have seen Dr. Vanderhooft. We are at the complete beginning of the nevus removal process and I have never been more scared. I can't tell you how excited I am to read your blog from beginning to end (if that's ok haha!). We have an appointment on May 1st for Dr. Siddiqi to see if my daughter is ready to put the tissue expanders in. We are hoping to get her nevus removed soon. My e-mail is ktleder5@gmail.com if you have any feedback or tips! I'm hoping Dr. Siddiqi was great - he did a large biopsy on my daughter once and he was wonderful! :) Thanks!