I asked the nurse what that was. She looked at said that it looked like a bruise. My daughters delivery was a little rough, but I didn't think it was that rough. When the pediatrician came and looked at her he knew exactly what it was, a congenital (born with) hairy nevus. He added that he would refer us to a dermatologist in a few months and that it was nothing to be alarmed of.
During the next few months Amanda's hair grew rapidly from the mole. About twice as fast as the rest of her hair.
When Amanda was approximately 4 months old we took her to see a dermatologist. He told us that it would be something that we would want to remove relatively quickly. He added
that as time goes on that it could turn cancerous (melanoma). He told us that it would have to be done by a plastic surgeon.
At this point Karla and I were not in a real rush to see a
surgeon. We waited until she was a year and a half before
we met with a plastic surgeon, Dr. Louis Morales, at Primary Children's Hospital
in Salt Lake City, UT.
Once again we were told that removal of the Nevus was the best option.
The surgeon explained he would be using tissue expanders and
he made it perfectly clear that there was no RUSH into doing
this.
With that information we decided that we would wait a little
while for a couple reasons.
1 - The summer was fast approaching as we wanted her to
fully enjoy it without anybody having to worry about her
every step.
2 - We also wanted her to become a better walker and be better balanced. We thought that she would a less chance of her falling.
-- In hindsight - the one drawback to this is that the mole grows in proportion to her body growth. The mole was 5 cm in diameter at her firs visit to the plastic surgeon. By the time Mandy had her surgery it was in excess of 6 cm.
Before our next plastic surgeon appointment (Dec 96) we got on-line. Karla discovered the NEVUS Network and we started to educate ourselves on the world of nevi. We also starting to corresponding with a couple who had just recently gone through the same process with their daughter, Jeff and Beth.These contacts are invaluable!
Between what we read on-line and the E-mailing back and forth to Jeff and Beth, we armed ourselves with enough knowledge to ask educated questions and to we also psychologically prepared ourselves for what we though we would be expecting.
When we went back to the plastic surgeon for the second time (we were previously planning on setting up surgery dates at that time) we were facing insurance problems. My current insurance plan was changing and we had to switch our doctor.
Dr. Morales' office referred us to another doctor, Dr. David Thomas, who is also affiliated with Primary Children's Hospital in Salt Lake City, UT.
We took Amanda to see Dr. Thomas on Jan 3, 1997. The doctors preference was to not use the tissue expanders, but to remove the nevus in sections with a wait of at least 6 months between surgeries.
That was way different from everything that we had heard and what we had mentally prepared ourselves for.
We discussed it with the doctor and he assured us that he would use the tissue expanders, if we chose that route, without any reservations. With that we left his office to talk/think it over.
We decided to proceed with this doctor and the tissue expander process. Surgery was set for 2-12-97 @ 6 am.
We were the first ones at the hospital on 2-12-97. The staff at Primary Children's Hospital was absolutely wonderful. They made every child feel special and they made us feel like our child was their most important patient in the hospital.
We were given the option of them giving Mandy a liquid (I will get the Rx name for it) that made her, essentially, drunk. This was to take the "fight" out of her when they took her into surgery. The draw back to this is it makes it more difficult for her to fight off the effects of the anesthesia. We will not use that for her second surgery.
When they took her to the OR room, the anesthesiologist carried her in her arms, along with her "Whumpy" bear and her blanket. From there we are told they put a fruit flavored mask over her mouth and after a few breaths she is asleep. Once she is asleep they put the IV in her little hand and shaved the back part of her head.
Dr. Thomas came out to talk to us after the 2+ hour operation was completed. He drew a diagram of what he had done (I will put that graphic in as soon as I scan it). He inserted 2 crescent shaped tissue expanders on both sides of the mole. He injected 30 cc's of saline solution to start the expanding process already. He wanted us to come in 9 days later for her first "fill" session.
When they let us see our daughter in the Post Recovery Room, our hearts were broken. She had a large bandage covering her whole head, down to the neck, except for her face. And to see the IV sticking out her little hand was a sad sight to say the least. Also the thought of bringing in a happy and healthy 2 year old with long, thick, pretty blond hair and to see her in that condition made us wonder if we did the right thing.
Mandy had a hard time fighting off the effects of the anesthesia. We were at the hospital for 13.5 hours before they finally sent us home. Once we got her home her condition and state of mind improved rapidly. By the next day she was back to her normal self, with the exception of her left eye turning black.
From the day after the surgery through 2-20-97 everything went great. The only problems we incurred was keeping the bandage on her head. We went through lots of bandages until we finally did a good enough job whereas the bandages stayed on. Through all this, Amanda, has been a Star!
On 2-21-97 we took Amanda in for her first expansion session. Since the Dr. left the "fill ports" exposed on the top of her scalp he was able to begin the process before Amanda even knew what was going on. The Dr. was � way done with the first one when Amanda started to get uncomfortable. Just as the Dr. was finishing the 1st one, Amanda started to cry. She cried while the Dr. filled the second expander as well. In fact she cried for about 2-3 hours. During the surgery on 2-12-97 the Dr. filled the implants with 30 cc's of the saline solution.
After about 3 hours she was fine again. This is consistent to what we heard from our Dr. and what other "Net Families" have experienced.
During the surgery on 2-12-97 the Dr. filled the implants with 30 cc's of the saline solution. Today he put 15 cc's into each implant. We are scheduled for the next expansion session on 2-28-97.
The one thing that startled me was the immediate effects of the expansion. You could practically see her head expand! My wife and I noticed the dramatic effects even more when we gave her a bath. I took several pictures which I will be uploading in the near future.
On the night of 2-24-97 Amanda started to have some complications. She was crying and complaining that her head was hurting. What looked like diluted blood started to ooze from the fill/drain ports on the top of her head. It was a constant ooze that soaked right through her bandage and onto the pillow. To make matters worse she also started to throw-up and she was running a high fever.
First thing in the morning we took her in to see the doctor. We were afraid that it was either an infection, or something was wrong with one of the expanders.
The Dr. assured us that the expanders were just fine, but Amanda might be coming down with an infection, or she was just getting a little sick.. He said that it was to early to tell, but he would put her back on antibiotics for just in case.
Over the next couple days Amanda's condition improved. The oozing eventually stopped & she was back to her normal self the next day.
ON 2-28-97 we took Amanda back to the Dr. to continue the expansion process. This visit went better than the first one. While Amanda sits in her mothers lap, I am kneeling down so I am eye-to-eye with Amanda distracting her attention with some of her favorite toys. The Dr. stands behind her while he slowly fills the expanders, therefore, Amanda never sees any of the process. She cried just a little while the Dr. injected 15 cc's into each expander. On the way home she was a little whiny, but did not cry the whole time like she did the first time. Within a couple of hours after coming hime she was back to her normal self.
The Dr. added that things were going great. However, we would have to watch her very closely when she is done with the antibiotics. The next expansion session is set for 3-4-97, which is only 4 days between the expansions. The Dr. is going out of town for a week so we will try an get an expansion done before he goes.
We drove through a snow storm to get Amanda to the Dr. today, 3-04-97. The Dr. decided to inject 10 cc's into each expander since her expanders were still a little hard from the previous expansion session only 4 days prior.
As we pulled up to the Dr.'s office Amanda started to point to her head and say owee! She is very aware of what is going on around her. She cried while the Dr. filled the expanders, but she stopped as soon as he was done. As I was walking to the truck, I slipped and fell. Amanda started laughing real hard. She was happy from there on out - and I didn't get hurt. Overall not a bad visit.
Amanda has been off her antibiotics for 36 hours and there have been no signs of an infection as of yet. We keep on praying!
The next Expansion Session is set for 3-11-97.
Amanda started to get ill on 3-05-97. She was throwing up,
running a high fever and looked awful. It was obvious to us
that the infection was coming back. At first light we called
the Dr. and was told to come in.
Our Dr. was out of town so we would have to see his associate.
We were no to thrilled about that, but there was nothing we could
do.
As soon as the Dr. saw Amanda he said that she looked pretty bad.
He took out 10 cc's from each expander to relieve some pressure
on her head & he put her back on antibiotics. He added that if
she doesn't rebound within 24 hours that he wold have to remove
the expanders the next day.
Amanda rebounded about 24 hours later so the expanders did not
need to come out. After about 36 hours she was back to her
normal self again.
We went back to see our Dr. on 3-11-97. Amanda is now starting
to get used to process as she only cried during the actual
expansion and she stopped almost immediately after the Dr. was
done. He added 15 cc's to each expander and Amanda bounced back
to her normal self just minutes later. We discussed the
infection an we decided on the following schedule:
We are using this accelerated schedule because of the infection
and the length of time that she has been on the antibiotics, one
of the expanders has shifted a little bit out of position and the
Dr. will be leaving the country in a couple weeks. (Our Dr.
goes to third world countires to preform free surgeries on
children that don't have the access to plastic surgeons. He
typically does cleft lip surgeries.) The Dr. is confident that
he will be able to remove all of the Nevus, but if he can't he
will have to remove the remainder at a later date. If any more
needs to be removed we will not be using the expansion process
as there won't be enough left to warrant that. Besides we
wouldn't want to put our daughter through this again.
The Dr. put in 15 cc's into each expander again today. That is a
total of 30 cc's for the week and a total of 75 cc's into each
expander since the process started. Amanda cried the whole time
he injected the solution into the expanders. She eventually
cried herself to sleep on the way home. About 90 minutes later
she was awake and back to her normal self. We will be going back
again on 3-18-97 for the next expansion, the last time before the
surgery. Surgery is set 3-19-97. The Dr. stated that he will
add some fluid to the expanders after she is asleep - right
before the surgery. The Dr. said that this will help stretch the
skin even more. Based on what he saw he is pretty certain that
he can get the whole nevus removed during the surgery. Currently
Amanda will keep taking antibiotics (amoxycillian) for the
remainder of the process to keep the infection in check.
In the meantime Amanda will be going with her brother, Zachary,
to see Disney on Ice on 3-15-97. She needs some good old
fashioned Disney entertainment at this point.
On 3-18-97 the Dr. put in 20 cc's of solution into 1 expander (the one towards the back) and zero in the other expander. That is the most he put into one expander in a single session. The Dr. is optimistic that he will be able to remove the whole Nevus the next day.
We arrived at the hospital at 6 am. Amanda was very aware that something was going to happen. She was not happy to be there, however, she eventually calmed down and started playing with toys.
We were told that the anesthesiologist (different from the first surgery) prefers to use the "versaid" (spelled as it sounds) to take the fight out of the kids. At first we decided against it, but after seeing the way Amanda was reacting to her surroundings we felt that it might not be a bad idea after all. They were going to dilute it a little with Tylenol. They also told us that this drug has an amnesia affect on the kids - they won't remember being taken away from the parents or being put to sleep in the OR. Karla and I asked for some, for ourselves. They said no - darn!
The anesthesiologist met with us and told us that he would give her some anti-nausea medicine during the surgery to help prevent her from getting sick during recovery.
The Dr. then met with us and answered our last minute questions. There was nothing left to be said - off to surgery.
A few minutes later we handed our very drunk-like princess to the anesthesiologist. It was easier for us this time as we knew we would be done with the expanders, if not the whole process entirely. In addition, we had total trust and confidence in our Dr.
About 1.5 hours later the Dr. came out and told us that everything went great and that he was able to remove the whole Nevus! We were so excited! I also saw that the Dr. was excited as well. He told us that after she was asleep and before the surgery that he added another 30 cc's into each expander. That made for a total of 120 cc's into the rear expander and 100 cc's into the front expander. He also told us that he doesn't foresee any future surgery for her in the foreseeable future. She still has about two satellite moles that he feels are small and not a big concern. He told us to keep an eye on them. The Dr. went on to explain that he added a drain "box" so the wound could drain over the next couple of days. Once again he used dissolvable stitches to sew up the wound. We will be going back on 3-21-97 for him to remove the drain box. After that we should be completely finished with Amanda's Nevus Experience!
Amanda bounced back relatively quickly from the surgery. We arrived at the hospital at 6 am and left the hospital at 12 noon. We were there for a total of 6 hours, as opposed to 13.5 hours for the first surgery. The surgery took approxamately 1 hour compared with the first surgery which took 2 hours.
By the afternoon Amanda and her brother Zachary were playing in the warm spring sunshine. We put the drain ball in a little fanny pack so it wouldn't get in her way. Plus, Amanda got very upset when she saw it.
We went back to the Dr. on that Friday, 48 hours after the surgery. The Dr. told us what to expect before he removed the bandage, a fairly large scar and lots of stitches. He also told us that the skin would be a little uneven at the tips of the scar, but that it would eventually fix it self.
The Dr. removed the bandage and the couple of stiches that kept the drain tube in place.
Amanda was not very happy during this, but she was a real trooper!
The scar was large, about 5 inches going horizontally from the top of her head almost down to the hairline below her ear. (Pictures forthcoming).
The Dr. was very pleased with his work. He would like to have the scar a little thinner, but over all he was overtly pleased with the process. Hetold us to come back in about 8 weeks so he can see how everything healed.
Over the next 8 weeks Amanda's hair grew back fairly quickly over the shaved area. I even took her in to get her hair cut - try and even everything out. The stitches all fell out and most of the scabs dissappeared over the scar.
Our Dr. went to Bangledesh for a couple weeks to perform free surgeries on children there. This shows a lot of character on his part. To take time out of his practice, fly to a 3rd world country and perform surgery for underprivledged children says a lot about the type of person we were dealing with.
If I was a Dr. I hope I would do the same thing!
When we went back to the Dr. he told us everything looked great. He told us to come back in about 2 years and at that point we would discuss maybe thinning out the scar. The Dr. added that we may want to do it - we may want to wait a while - or we may want her to decide to do it later in life.
At the present time, My wife and I don't want to put her through any more surgeries, doctors, hospitals or any of that sort of thing again.
Currently, (today is 6-27-97) Amanda is doing great. Her hair is starting to cover up the scar and we are all very happy.
This story was written during the actual procedure and it came from the heart and off the top pf my head. It has yet to be edited or even spell checked. One day I will get to it. My next priority is to get more pictures online.
If you want to contact me regarding ANYTHING pertaining to this in any way, shape or form, please don't hesitate.
Thanks for visiting - will you please sign my guestbook?
Thanks Kevin, Karla, Zachary and of course Amanda
We would come back again on 3-18 for another expansion
The expanders and the Nevus will be removed on 3-19
Get your own Free Home Page
