Reconstructive Surgery for People with Down Symdrome

Please note: The opinions expressed here are solely mine. I would be more than happy to debate the issue in email. But I will not remove this page from my website.

Craniofacial reconstructive surgery is usually done to improve function, such as feeding, breathing, and seeing. Craniofacial reconstructive surgery is usually not done for cosmetic reasons alone. There are a handful of craniofacial surgeons doing reconstructive surgery on children with Down Syndrome. The reconstructive surgery for people with Down Syndrome is a controversial subject. I oppose reconstructive surgery for people with Down Syndrome because I find it totally UNNECESSARY.

"Skin Deep"

On Sunday, February 21, 1999, I watched a program called "Skin Deep" on the Discovery Channel. The program was about the parents deciding on reconstructive surgery for their son who has Down Syndrome.

A Brief Synopsis of the Program

The show began with the parents preparing for their son's surgery at their home in Paola, KS. During the show, the film crew interviewed a group of people with Down Syndrome and their parents about having reconstructive surgery. None of the people they spoke with would have the surgery. Then the parents and little boy drove down to Dallas TX for the surgery. Dr. Kenneth Salyer and his craniofacial team at Medical City did the surgery. (By the way, the surgery is not covered by insurance and costs approximately $17,000.) The parents and the child met with Dr. Salyer and his team the day before the surgery. The parents viewed computer images of their son before and after. The father really took in the imagery. The next morning the little boy had the surgery. They showed clips of Dr. Salyer and the team doing the surgery. The blow came when the parents went to recovery and saw their son for the first time after the surgery. The child had bandages covering most of his face and had blood on some of the dressings. The father was in shock. Then they showed the parents with the little boy in a hospital room later in the day. Dr. Salyer came to visit the parents and the little boy and spoke about the pain as if it were minimal. A couple of days after surgery, the father commented on how he was focusing on the computer images. About three months after the surgery, the parents and the little boy went back to Dallas for a followup appointment. There had been some scarring of the boy's eyelids so Dr. Salyer and his team did a quick procedure to reduce the scarring. The program ended with the family picnicking with family members and friends.

My Opinions of the Show

I found the program to be disturbing for several reasons:

1. The Parents

It was quite obvious that the parents were thinking of no one but themselves. It was quite clear that they did not accept their child's disability. The father kept wanting the child's face to look normal. They would go to any lengths. I like what what one of my friends said, "I feel bad for this sweet little boy having to grow up with them as his parents." Someone else said, "self-centered yahoos." Another friend suggested abuse. Why would parents want to put their child through something that is so unnecessary?? My answer: They were only thinking of themselves!! Very, very sad :-( The bottom line was they did not want to have a child who looked different. I wonder how they would cope with a child who had a craniofacial condition, such as arhinia??? I thank God for my parents every day of my life.

2. The Plastic Surgeon

I was utterly disgusted with the way Dr. Salyer described people with Down Syndrome. Remember this doctor is one of the first doctors in the United States to ever perform craniofacial reconstructive surgery. The plastic surgeon downplayed the whole surgery. I must say the best quote has been: "Does anyone know the difference between God and a plastic surgeon? God doesn't think He's a plastic surgeon." (The quote came off one of the listservs for individuals and families dealing with Down Syndrome.) I just don't get into the God complex from any doctor. Even my own plastic surgeon knows when enough is enough!! Thank God my plastic surgeon doesn't have the God complex. If he did, I would have been gone a long, long time ago.

Judging by the parents reaction in the recovery room leads me to believe that they were not fully prepared for how their son would look after surgery. I really feel that very few doctors prepare anyone for after surgery. In 1978, when I had my first Tessier surgery, my parents walked into ICU and nearly passed out after seeing me for the first time. They had no idea what I would look like after that surgery. Mom has always told me the only features she could recognize were my eyes and fingernails.

3. The Child

I did not like how the parents or Dr. Salyer did not direct anything towards the child. The child may have been three years old but must have had some degree of understanding. I have a friend who has a son who is two years old. Even tho her son is young, she still explains everything to him. I never heard the parents of the little boy talk about the surgery with him and what would happen to him. They were spending way too much time concentrating on how different he would look after the surgery. The parents should have waited until the child was older to include him in the decision-making process. I didn't care for the way Dr. Salyer told the parents how "We can do touchup surgery." Don't children have a say in their lives?? I wasn't too much older than the little boy when I was asking everyone questions about the hospital.

The child was beautiful before the surgery. Personally, I didn't see too much of a major change in his appearance after the surgery. No amount of surgery is going to take away the characteristics of Down Syndrome. Just like no amount of surgery will ever make me Miss America on the outside. But you know what?? I CONSIDER MYSELF TO BE A BEAUTIFUL PERSON INSIDE AND OUT!!!!!!!!!!!!!!!!!!!

4. Facial Anomalies

As someone with a facial anomaly, I personally took offense to how Dr. Salyer described children with Down Syndrome. To describe a child's facial characteristics as a "Mask of Deformity" is totally UNPROFESSIONAL. He referred to the face of a child with Down Syndrome as deformed. He is WRONG. The faces of children and adults with Down Syndrome are characteristic of the syndrome. There are many beautiful people with Down Syndrome. I hope that I never hear the phrase of "Mask of Deformity" again from the mouth of any plastic surgeon. It sounds like the plastic surgeon is doing a favor to anyone with a facial anomaly by reconstructing our faces. Does the surgeon think that he can magically make facial anomalies go away with his scalpel??? Someone said that she wishes she could be in the same room with Dr. Salyer and I for two minutes. If it would happen, this is all I would say: "It is what is on the inside that counts.. spoken from the mouth of my own plastic surgeon!!!!" Then I would turn and walk away.

My Ponderings

1. Doing Surgery on a Child with Mental Retardation

Most craniofacial surgeons don't do surgery on children with profound mental retardation since they would not benefit from the surgery. In fact, Dr. Tessier would not operate on a child with mental retardation unless he or she was high functioning, meaning that he or she could learn basic life skills. I have a friend with mental retardation who went thru some craniofacial reconstructive surgeries at the same time as I did. She is high functioning. She is able to live on her own with limited supervision. Her mom is a retired nurse who only put her thru the surgeries to save her sight, which she ended up losing after her near-death experience. When my friend nearly died after her surgery in the early 1980s. her mom said no more reconstructive surgery. My parents and I met several other children and adults with mental retardation who went thru craniofacial reconstructive surgeries. They were high functioning. Sometimes craniofacial reonstructive surgery is necessary in certain cases of craniosynostosis. I met a little girl who was born with Pfeiffer Syndrome (cloverleaf skull). She was blind and deaf and had a tracheostomy. I think that she had some degree of mental retardation. Dr. Tessier had to rebuild her skull.

2. Putting a Child through Unnecessary Reconstructive Surgery

Craniofacial reconstructive surgery is hellish for functional purposes. But putting a child thru it for the sole purpose of cosmetic is unthinkable. There is nothing wrong with the appearance of child or adult with Down Syndrome!! Parents don't want their children teased. But, the fact is ALL children get teased whether they have distinct facial features or not. If the child wants the surgery, the parents should wait until the child is old enough to be involved in the decision-making process.