Kaden – Minnesota
Kaden’s Story
This little boy celebrated his fifth birthday at Medical City Dallas Hospital, where he was hospitalized for surgery for fibrous dysplasia of the face. Dr. David Genecov had performed six successful debulking operations for this rare condition prior to this procedure, and Kaden was his seventh. He removed abnormal bone tissue and repositioned Kaden’s jaw so Kaden can now chew. Kaden is a trooper! He is recovering rapidly, though it will take several months for his facial swelling to disappear completely.
Kaden’s Mother’s Story
April 2009
As a new mother, the last thing you expect to be told is that there is something wrong with your seemingly perfect child. Kaden was born looking like every other precious little baby. It wasn’t until he was almost 18 months old that we started noticing his palate seemed to be more peaked than it should. My mother, who has worked in dentistry for 30 years, suggested that it didn’t seem right and we should show his doctor at his 18 month check up.
At his check up, the doctor felt his palate and his upper and lower jaw. She quickly told me to feel where she was and said that it wasn’t just “chubby cheeks” that we were feeling. She then suggested that we see a local oral surgeon to see what his thoughts were. This is where the long journey began.
[From the time Kaden was 18 months old, he was seen by a number of medical professionals. The parents received varied treatment recommendations “but no real answers”. After many frustrating experiences, Kaden was evaluated at a major medical clinic in his home state. Kaden’s mother says, “We were told there was no way that they would do surgery and they would suggest that we just help Kaden to “adapt” to his condition.”]
As soon as we got home from that appointment, I decided to take matters into my own hands and start researching anything I could on the internet. I had already researched Cherubism itself but had not thought about researching doctors, figuring that other doctors knew who the specialists were and where to refer us.
It didn’t take me long to find the International Craniofacial Institute in Dallas, TX. I started corresponding with Dr. David Genecov’s office there, hoping for some type of answers. After a month of sending medical records and emails back and forth, we were told that Dr. Genecov thought he could help and wanted to see Kaden in person. For the first time in a long time I felt a ray of hope.
Now the problem was the expense of getting all the way across the country on the slim chance that someone could help. We already had two years of doctor bills, including all the referrals, a tonsillectomy/adenoidectomy and a heart surgery. Dr. Genecov’s office suggested that we contact The World Craniofacial Foundation to see if they could help.
With their assistance, we got in to see Dr. Genecov in January 2008. At that appointment, Dr. Genecov assured us that he knew how to handle the surgery and that we were in the right place. In that one day, we saw a whole team of doctors. After that, the whole team got together to discuss Kaden’s treatment options. We finally got the call at the end of March 2008 that they wanted to do surgery. It was so scary and such a relief all at the same time. We were scheduled for Kaden’s first surgery at the very end of April. We had finally found our angels in Dr. Genecov and The World Craniofacial Foundation!
Kaden’s first surgery was major, breaking his jaw in seven places and debulking much of his whole jaw. He was estimated to be in the hospital for two weeks. He amazed all of us and was released after only six days and cleared to fly home after eight! He healed the rest of the way at home with most of the swelling gone by eight weeks.
At his follow up appointment in August, Dr. Genecov scheduled Kaden’s second surgery to debulk the rest of his jaw and remove his remaining teeth in December. We planned on Kaden being in the hospital for a week this time and again, to our surprise; he was discharged the day after surgery. He was so strong through everything!
The best news was that at his check up in March 2009, we were told that Kaden didn’t have to see Dr. Genecov again for a whole year since none of his “tumors” were growing back.
Kaden has now been fitted with dentures and is doing well with them. He is in Kindergarten this year and is excited for summer to come. He is also in Tae Kwon Do and thinks it’s cool that he is the only one in his class that doesn’t have to wear a mouth guard because he can just take his “teeth” out!
We made sure to get the word out about the wonderful treatment we received at the International Craniofacial Institute and the assistance from The World Craniofacial Foundation by allowing our local newspaper to write a couple articles on Kaden. We wanted to make sure no one had to go through the long journey of finding the help they needed if we could help. Those articles had the highest online hits of any article in our local paper by over three times! We were so happy that information about fibrous dysplasia and Cherubism was getting out there! Again, without finding the expertise of Dr. Genecov and the generous assistance of The World Craniofacial Foundation, we would not have been able to get Kaden the treatment that he needed for his rare condition. Thank you again to all of our angels!
