FAQ

Why remove the nevus?

There were two main concerns for us removing Kendall's nevus.

The first being purely cosmetic--the skin and hair on the nevus were different than the rest of her body. The nevus skin was thin, dark brown in pigment and grew darker hair than the rest of her blonde locks.

Secondly, and the main concern for us, was that is posed a greater risk for melanoma in her future. It would have required being monitored by specialists and dermatologists for the rest of her life.

Dr. Wood recommended that it be removed as soon as possible, which is why we gave the green light once she reached 9 months--giving the skull time to harden before inserting the expander.

Was the expander painful for Kendall?

Not that we could tell.

It's truly hard to say because she was never able to talk and tell us, however, seeing that she lived day-to-day very happy and normal made us feel confident that it didn't slow her down one bit.

What did the expansions entail?

Injections involved weekly trips to Gillette Children's Hospital for her expander to be filled with saline.

Before leaving the house, I would put heavy-duty prescription numbing cream over her port--which was connected to the expander by tubing underneath the skin.

The nurses would help distract her while they inserted a needle into her port--then using a syringe filled with saline solution, they slowly filled her expander until the skin became tight. Fluid amounts varied each week and started off slow--7-10 ml each visit in the beginning and 10-20 ml towards the end.

She received a grand total of 155 ml.

Kendall tolerated these injections very well, often not seeming aware that anything was happening.

What was the hardest part of this process?

I feel the need to be very honest here--mostly because I would never want another parent or child to feel that they are alone in their thoughts and feelings.

There were many challenging aspects of this process.

Accepting that our child was born with a unique medical condition that required so much extra attention and care--on top of all the other responsibilities of raising a child.

The surgeries themselves were hard--watching her go through something so complex at a young age.

Being in public with the expander and feeling the stares and glares of people who were not used to seeing a large breast implant coming out of a child's head. Wanting to address these looks of concerns but not always knowing an appropriate way to do so.

Questions. Answering questions.

I will say that things got much easier as the process went along and we all adapted to the special needs of the expander--but it was rough in the beginning.

Confidence takes time and it is earned one brick at a time--I felt like I needed a lot during this process. Each day was a victory to be celebrated.

Is there anything we would have done differently?

No.

I say that with the most confidence and certainty of anything in my life.

9-13 months was the perfect age for her tissue expansion process because she never understood what was going on. She was so resilient to the changes that were happening, never complained and was remarkably brave through the entire procedure.

The weekly injections went slowly, but we all know who won the race between the tortoise and the hare. This process was a marathon, not a sprint, and ultimately Kendall's health and best interest came first in every decision.

I'm glad we followed Dr. Wood's recommendations--he's the expert, not us. I think you need to follow your instincts and have trust in your doctor to make the best decisions regarding your medical circumstance.