New pictures - AJ's midface advancement!!! Click here!!!
A.J. (full name Adam A.J. Sanchez) came to us via the foster/adopt program
when he was just 9 days old. He was relinquished by his birth parents because of the syndrome. We were wanting to adopt a little boy and had gone through the foster/adopt program here in Seattle. We went to see him and talk to the doctor at the hospital where he was born and knew we would be taking him home. The neonatologist at the hospital told us that he had Apert syndrome and it would be up to us if we decided to do plastic surgery for cosmetic reasons only.......Well, that is not the way it would be...At the time we received very little information about Apert. A photocopy of a page in a medical book was all we had. At 6 weeks of age we had our 1st craniofacial appointment at Children's Hospital. We then
learned a little bit more and found out what we had in store.
At three months of age he had to have a tracheotomy and a gastrostomy as he was unable to breath and eat. He was not gaining weight and was burning all the calories he was taking in just to breathe. He had several episodes of obstructive apnea and had been on oxygen while sleeping at about 8 weeks of age. He was fading fast and the trache was the only option. Within days after the surgery the improvements were significant. Within weeks he was playing, smiling and gaining weight. Although it was extremely difficult to go through this, it was the best thing for him. This brought a lot of changes for us. Because of the trache he was now medically fragile and would need constant care. We had nurses come into our home 18 hours a day, every day to help out with his care. We were living in a very small home and it was very difficult to have these people in our house but it was necessary.
At 7 months old he had the first reconstructive surgery. It went well but a
month later had to have a subdural shunt placed due to the expanded skull filling up with fluid. At nine months he started the 1st of 3 hand surgeries. He's had 3 sets of ear tubes and the 3rd set has been the most effective. He's had 2 eye surgeries with not much success. We are holding off any further eye surgery until he has the midface
He was in the hospital with continuous respiratory infections for about half
of the 1st year and a half of his life. He has been in physical, play and speech therapy since he was about 3 months old. He knows sign language as well as verbal words and uses both to communicate. We have received various fragments of information along the way, mostly by accident. I was watching TV one day when A.J. was about 18 months old and found the Maury
Povich show with Cher and about 6 children with craniofacial birth defects.
2 boys (twins) were with her and had Apert syndrome. Cher was on to promote the Childrens Craniofacial Association. I called them and received their booklet and newsletters. It was the first time I felt we had found a connection to other families. In their booklet we learned new things that none of the teams of doctors had ever explained, such as the overproductive sweat glands. We are still learning and so are the doctors.
That's what makes this web page so exciting. With the collaboration from all across the nation we will be able to make a difference for our children and families.
We are looking forward to June as A.J. is scheduled for his mid face advancement. We are a little bit apprehensive as it will completely change the way he looks and after all, this is our little boy, and we love him as he is. This is earlier than for most Apert cases, he will just be 4 years old, but with his continued airway problems they had agreed to proceed. It at times has been a very difficult for all of us, but overall nothing has been more rewarding. We have learned so much and met so many fabulous children and families. Our lives have been forever changed and we are all better people. This child has brought so much to our lives and continues to teach us all about love, respect, patience and acceptance.
We hope to continue to build friendships through this information highway.
Please feel free to contact us with any information you may have or any
The Sanchez family
AJ's most recent surgery
The Sanchez family has given us the privilege of posting AJ's recent pictures, before and after surgery. I think you'll agree that, while it's very scary to let your child go through this, the results are priceless.
|June 2, 1996 - 4 days before surgery|
|June 7, 1996 - day after surgery|
|June 9, 1996 - 3 days post-op|
|June 14, 1996 - 8 days post-op|
|July 1, 1996 - 3 1/2 weeks post-op|
|July 4, 1996 with Papa - almost 1 month post-op|
|July 20, 1996 - 6 weeks post-op|
|July 27, 1996 - a new face!!!|
|Ashley is our newest addition - 5 1/2 months old here.|