Danika's Story
Danika Marie Brunies was born on July 18th, 2011 at the Jewish General Hospital in Montreal. She was born with what the doctors said to be a large birthmark on her head. They said it was fine and not to worry. The next morning the pediatrician came in to check her and her “birthmark”. He referred us to the Montreal Childrens and had told us that they would most likely want to remove it as the larger the “birthmark” is the more chance it had to turn into bad cells (cancer).

On July 25th, 2011 at 7 days old we took Danika to meet with the head of Dermatology at the Montreal Childrens. We found out that it is not a birthmark but a Large Congenital Nevus. There is no reason as to why children are born with these nevi and no way of detecting it during pregnancy. The dermatologist counted the satellites which are little nevi all over her body. The doctor explained that the more satellites you have the more risk the largest nevi has of becoming cancerous. Danika has approximately 23 satellites.(20 or more is cause for more concern). The doctor ordered an MRI to make sure that the nevus was only on the surface and not inside Danika’s brain.

On August 9th, 2011 at 22 days old, Danika had her first MRI. Her results came back clear that there was nothing inside of her head and the nevus was only on the scalp.

On September 20th, 2011 we met with the dermatologist and plastic surgeon to discuss our options. They both told us that the best option was to remove the nevus as there is a risk for cancer and also for her self esteem growing up looking so different.

At 9 months old Danika had another MRI to check her spine and head again. The results came back clear. She has been followed by her dermatologist and plastic surgeon every 3 months to make sure the nevus is not changing in size, shape, color or texture.

At 14 months old on September 14th, 2012 Danika had her first surgery to begin removing her nevus. The doctor performed a skin graft taking the skin from her thigh and using it to cover her forehead. The operation was 3 hours long and Danika stayed three nights in the hospital to recover. She was a real trooper coming out of the anesthetic with no problems and being happy the whole time there. She was released on Monday September 17th, 2012 and we returned to the hospital on Thursday September 20th, 2012 to remove her head bandage. We returned to the hospital every two weeks after for the next two months to have her head and thigh checked. In between visits we had to change her bandages at home every two to three days but after a week it became a daily and twice daily activity as she began to pull them off.

The last appointment with her plastic surgeon was on December 21st, 2012. We were given two options to consider for continuing on with the removal of the nevus. The first option is to skin graph the rest of the nevus off but then she would not be able to grow hair and have to wear a wig for the rest of her life and have skin graphs all over her body. The second option is to do tissue expansion; where they insert a balloon on the side of her head where she has good skin. Every week we would return to the hospital to have them fill the balloon so that it expands and stretches her good skin. Then when they have enough skin they would take the balloon out and stretch the good skin over the nevus. But because her nevus is so large the surgeon said it would take approximately six to eight surgeries to complete and several years, so she could be having surgeries well into her teenage years. Unhappy with either option we decided to get second and third and fourth opinions. Two doctors that we spoke to in Los Angeles and Chicago agree that tissue expansion is the best for Danika but it would not take six to eight surgeries.

With this information we decided to pursue one of the doctor’s in the states. We flew to Los Angeles for an appointment  March 6th, 2013 and then flew to Chicago for an appointment March 8th, 2013. We love the Montreal Childrens but if we can save our daughter from wearing a wig and going through more operations than needed we will.

The doctor in Los Angeles gave us a verbal guesstimate about how much each surgery would cost; it would be around $10 000.00 and possibly four surgeries.
After visiting both doctors and weighing all the options we decided to have Danika treated in Chicago. Each round of surgeries consists of two operations. The first surgery is placing the expanders beneath her scalp. Each week Kris and I inject saline into the expanders to stretch her skin. After ten weeks of expansion we go back to Chicago for the second surgery. The second surgery the doctor removes the expanders and uses the new stretched skin to reconstruct Danika's scalp. Each round consists of the two surgeries and is approximately $25 000.00. She definitely will require two rounds of expanders, possibly three.

We live our lives everyday as any other family and only notice that Danika is different when we are out in public and we begin to get the looks , the comments and the questions. Since the day she was born we have been asked why we shaved half her head, what an interesting hair cut she has, did she fall and bruise her head, did she get burned, or was she in an accident. People stare at her or point and think we don’t notice. She is a gorgeous girl with a beautiful soul and we want people to see her for this and not her “birthmark” but unfortunately the society we live in is focused on appearances. The stress and worry that it could become cancerous is always in the back of our minds, the teasing she will face as she gets older and goes to school is always on my mind as I am a teacher and see how children react to each other everyday. The financial burden that is ahead due to us seeking medical attention in the states is our newest worry. But as I said before, we will do anything to have the nevus removed with the least suffering Danika has to go through. By going to the states Danika will have her nevus removed by the time she goes to kindergarten.

On May 2nd, 2013 Danika had her first expanders placed. One in her forehead and one in the back of her head. On July 25th, 2013 we returned to Chicago and the doctor removed her expanders and reconstructed her forehead and removed about 40% of her nevus in all. We are extremely pleased with the results, she looks amazing and did well throughout the entire process!

Danika 1st day home
 
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