Tough Choices....

Recently my husband and I have made one of the hardest decisions since becoming parents. We took Nick to the hospital and had him put under anesthesia for elective plastic surgery. A lot of you don't know me in real life or haven't met Nick in real life, so let me explain.....

When Nick was born (3 weeks early) he had a tiny red birthmark on the left side of his neck. Allen and I noticed it of course and thought it was so cute that he had a birthmark. The nurse told us it was called a "strawberry" birthmark and never mentioned it again. After a month or two we realized that the birthmark was growing! It was not only getting larger around, but it was actually growing out from the side of Nick's neck. In a panic, we rushed Nick to the pediatrician where I confessed that I thought he had cancer or something. The doctor explained that this type of birthmark was often referred to as a "Strawberry" but the medical term was "Hemangioma." She said these type of birthmarks occur when blood vessels grow out of control. There is no medical explanation for why this happens, but it is present most often in preemies and most hemangiomas are on the face or neck area. She told us it would probably keep growing for awhile and she would keep track of its size at our doctor appointments. She also said that it would stop growing by the time Nick was 2 or 3 years old and would then begin to reduce. She told us that it should be completely gone by age 5 and that no one would even be able to tell it had been there.

So, for the next couple of years we watched as the birthmark got bigger and bigger. At it's biggest, it looked like a bright red bouncy ball sticking out of the side of his neck. Other children and adults often pointed or stared. The stupid thing bled if Nick hit it wrong (because it was basically a giant blood vessel). We had lots of parents come up to us and tell us that their children had also had a hemangioma and then point out where it had once been on the child as proof that it completely disappeared. Finally, when Nick was about 3 years old, the hemangioma started to get smaller and more flesh colored. It became almost flat and almost the same color as the rest of his neck over the next year or so. However, even though it was less noticeable, it still looked like a big piece of skin hanging from his neck. As Nick entered school, kids began to question us about it and point it out. We waited for it to go away, but as Nick neared his 5th birthday the thing stopped getting smaller.

Finally, we decided to contact a plastic surgeon at Children's Mercy to see what they could do. The surgeon explained that it was classified as a "birth defect" and would therefore be covered by our insurance. Nick would have to go under anesthesia and would have a large scar, but he did not think the birthmark would get much smaller on its own. So....we scheduled the surgery for Oct. 26th and waited. As the date neared, I started to second guess myself. Maybe it would go away on its own? Maybe we really didn't need to do surgery? Maybe we should just wait a little longer? Maybe I was a bad parent to risk the life of my child for cosmetic reasons.

I decided we had made the right choice when Nick was playing with a neighbor boy (who also has Autism) just a few days before the surgery. The boy pointed at Nick's neck...."WHAT is THAT?" I said, "It's just a birthmark, it doesn't hurt." Little boy..."Is it like a mole?" Me..."Yes, kind of." Little boy, "Is it growing INSIDE his body?" Me....."Sure....kind of." Little boy, for the rest of the night, "That's Nick and he has a MOLE GROWING INSIDE HIS BODY!!!" Yup....8 year old with pretty severe Autism notices and makes a big deal out of it.....so will other kids as Nick gets older. He is already "different" so I don't think kids need any other reasons to tease him.

The day before surgery, we were told it had been scheduled for 1:30 p.m. No food after 1:30 a.m. and clear liquids only until 10:00 a.m. The reason for the lateness of the surgery? They schedule by age because little kids don't understand why they can't eat or drink. I tried to explain that Nick didn't understand either due to his special needs, but my insistence fell on deaf ears.....sigh. So, I indulged Nick the night before surgery. We went to T-Rex and had a good dinner, ice cream afterwards and built a dinosaur to take to the hospital. We managed to stick to the pre-surgery rules about eating and drinking with minimal protesting. Nick was VERY upset that he could not have an apple, but that was about it.

Children's Mercy did a wonderful job of keeping Nick calm and unafraid before surgery. His dinosaur got a hospital gown just like Nick. They were patient with his reluctance to have his blood pressure taken and played along when he was silly. The nurse asked for his name when we checked in and Nick replied, "Meeeeow, Meeeeow" in a perfect kitty imitation. The nurse said, "Oh my, we will have to call a Vet, because we have a kitty here, not a little boy!" This got an enormous giggle out of Nick :) They gave him something to relax him before they separated him from us and Nick was oblivious when he was wheeled back to surgery with his dinosaur and in a wagon. They also reassured us that he would be given gas to put him to sleep and given the I.V. after he was asleep. HUGE relief for mommy who was terribly afraid that Nick would be scared and upset and in pain while they tried to get an I.V.

Just one hour later, the surgeon came to the waiting room to tell us that he was done, the surgery had gone great and we would be able to see Nick as soon as he started to wake up. Another hour or more passed and a nurse called to let us know that Nick was still out cold. He didn't want to wake up and they had anesthesia in the room with him. I think my heart stopped after that phone call. About 20-30 minutes later, the surgeon came back out and told us Nick was waking up and they had removed his breathing tube. He told us that Nick is sensitive to anaesthesia and narcotics and we should make sure to tell the doctor if he ever has to have surgery again. We finally got to see Nick a short time later as he was wheeled out of recovery. He was back to his defiant self as he immediately ripped the top two bandages off the surgery site and pulled out his I.V. :) He sucked down two cups of apple juice and ate a package of teddy grahams and we were allowed to leave. In the car, Nick insisted over and over "I want MORE BEARS!!" We stopped at 3 gas stations on the way home before finally locating the coveted teddy grahams.

Nick is doing great now and it has been one week since his surgery. He returned to school two days after surgery and doesn't even touch the bandage that still covers his stitches. Soon we will see what Nick looks like without a birthmark for the first time in almost 5 years! I think we made the right decision even though I sometimes think that we should have just accepted Nick exactly as he was. I know now that it wasn't that we couldn't accept him, but sadly that we knew some others could not. I think he'll be grateful when he gets older :)