We found out about Jaron's cleft when I was 18 weeks pregnant. The nurse said it's a boy and I think he has a cleft. So they sent me to the ultrasound specialist for a better look the next day. It was confirmed bilateral and not sure on the palate.
I am not going to lie, I cried for about 2 weeks straight before I could even think. I also made the decision not to tell my family or friends about it until my baby shower one month before his birth. I did not want people to look at me in pity the rest of my pregnancy and wonder what I did to cause it. So we kept it a secret. I started doing a lot of research online and looking at pictures of kids. I learned that every surgeon does not use the same technique. I wanted Jaron to have the best results. So I figured we need to do this once and do it right. I introduced myself on Cleft Advocates message board a pregnant mom who needed some help.
I found out about the NAM (naso alveolar molding) and thought it was a wonderful idea. The results seemed good. One mom I talked to went to NYU for her daughter and helped me find out that the doctors in Atlanta just got finished training at NYU for the NAM. So I thought "what a blessing, God has provided a way for me to get the NAM for Jaron without having to go far." I took him to Atlanta for his first NAM at about 4 weeks old. They like to adjust it weekly so we went back for a few weeks and Dr. Granger would go out of the room with his NAM (acrylic) and use a dremmel tool to adjust and change it's shape a little each time. This moves things in the mouth to bring gums closer together before surgery. Well when he came back in the room each time he would just put it right in Jaron's mouth. I didn't get to feel it or look at it. We would endure the screaming the whole hour ride home only to find out when we got home he left a lot of sharp edges. So Jaron was in pain and sometimes bleeding. The NAM does rub sores sometimes but these were actual sharp edges and I couldn't take any more.
So I took a leap of faith and started going to NYU from GA for his weekly adjustments. We had benefits yard sales, people donated skymiles and family gave money and our church took up offerings. When you tell people you want to get your child to the best doctors so many will come together to help you. Also organizations like www.CCAkids.org and www.worldcf.org and Delta Skywish and www.faces-cranio.org and many other airlines that offer free tickets for medical reasons. For each one you fill out a financial application. They don't really care why you aren't going to the local doctors. They just do what they can to help with all travel expenses. CCA kids was amazing paying for our hotels and cab fare and meals for me and him.
I took Jaron to NYU every Monday for 17 weeks going there and back in one day for NAM adjustments. But the damage was already done. Dr. Granger in Atlanta applied too much pressure too fast and created a deviated septum and forced his premaxilla (front gums) back into his mouth sideways. Here is a before and after picture.
this is only a few days old notice the septum ( center peice) is straight.
after wearing the NAM notice the septum is now crooked and pressing up against his left gums and his premaxilla is twisted sideways and pushed back into his mouth.
So while going to NYU we talked to the surgeon Dr. Cutting and he wanted our consent to do a new procedure on Jaron's nose "We're doing it with all the bilateral babies now" So we signed and found out by talking to other mothers Jaron was only going to be the 3rd one and the first two went horribly wrong. So we told him no thanks cancel that we just wanted the normal surgery. But when the ortho Dr. Grayson at NYU decided they could not get Jaron's premaxilla to move back into proper place he mentioned doing a procedure called a premaxillary osteotomy. Breaking the septum (middle divider in palate or center in your nose) and turning the premaxilla straight. I asked Cutting if he would be willing to do that and he said no. Without even looking in Jaron's mouth or sitting down to discuss it. Almost as if to say I can't experiment on him with my new procedure so you can't get the procedure you want.
So then we found out about Dr. Mulliken from the first mom Cutting ruined her son's nose. She gave me money to "PLEASE go see him" Dont let Dr. Cutting do Jaron's surgery". So we went. One Monday in Dec. on the way home from NY we stopped off in Boston for a few hours. Dr. Mulliken is AWESOME! He took me back in his personal office very interested to see a child wearing the NAM. He said "Wow that looks like a lot of work. And it is, he was right. He does not use the NAM his partner ortho Dr. Shusterman uses the Latham. He showed me pictures of children he has repaired on his computer and his nurse came in to tell him patients are waiting and he said "they'll have to wait,she's from Georgia". I asked him do you have any kids. And his response was this "I have hundreds of children and they all have clefts".
I asked him what he thought without telling him anything about NYU. He said "We gotta straighten those gums before his teeth come in! He needs a premaxillary osteotomy immediately" I prayed about it and had more questions so I emailed him that Tuesday night and he called me at 8am the next morning and we talked an hour. He is incredibly concerned about these children and wants them to have a normal life. His staff moved other children's surgeries to get Jaron in there ASAP. He was 8 months old when he got his first surgery. Most children are fixed sooner. So he did the palate and premaxillary osteotomy first. 5 HOURS in the OR. He did get a fistula (hole in the stitch line) so we had to go back April 07 for that 3 hour procedure.
Then at 10 months he repaired Jaron's lip and nose, 10 HOURS in the OR. (they repair bilateral cleft in 4 hours in Atlanta-too rushed) The surgical liaison updates you every 2 hours and she told us he spent the first 2 hours marking Jaron's face with a toothpick and green ink before ever making the first incision. He is a perfectionist known in the hosp. for going over on his surgeries because he wants it done right.
I just told myself I don't want money to be the reason I don't get Jaron to the best doctors. The bills can wait! Dr. Mulliken was in network with our ins. and we didnt' have to pay any out of pocket for surgeries. Where God Guides He Provides.
This picture was at our 6 weeks post op visit.
God has used His people to provide all the travel expenses.
You really can't ask too much of MY GOD!
Jaron has had 6 surgeries in Boston and we love going up there each year for check ups with his cleft team of doctors. He's got braces now and we are working on aligning his teeth now. Dr. Mulliken is still in practice and training lots of doctors too.
Please feel free to email me for more pictures or any other questions you have. tcote22@bellsouth.net
I asked him what he thought without telling him anything about NYU. He said "We gotta straighten those gums before his teeth come in! He needs a premaxillary osteotomy immediately" I prayed about it and had more questions so I emailed him that Tuesday night and he called me at 8am the next morning and we talked an hour. He is incredibly concerned about these children and wants them to have a normal life. His staff moved other children's surgeries to get Jaron in there ASAP. He was 8 months old when he got his first surgery. Most children are fixed sooner. So he did the palate and premaxillary osteotomy first. 5 HOURS in the OR. He did get a fistula (hole in the stitch line) so we had to go back April 07 for that 3 hour procedure.
I just told myself I don't want money to be the reason I don't get Jaron to the best doctors. The bills can wait! Dr. Mulliken was in network with our ins. and we didnt' have to pay any out of pocket for surgeries. Where God Guides He Provides.
God has used His people to provide all the travel expenses.
You really can't ask too much of MY GOD!
Please feel free to email me for more pictures or any other questions you have. tcote22@bellsouth.net
