The information and opinions on this blog come from parents, and the blog is not associated with Primary Children´s Medical Center or any other institution.


This site is specifically for parents of kids with clefts being treated at Primary Children's Medical Center in Salt Lake City, Utah, but I hope that there will be information that is helpful to all parents of kids with clefts. If you are just starting to learn about clefts, I would suggest starting with the "General Information" topic and going from there. To find information on a specific doctor or topic, click on one of the links on the right. You can also search the blog using the box below the topic list. If you have information or experiences to share, please leave comments or contact me to do a guest post at Thanks for visiting!

Wednesday, March 23, 2011

FDA releases info about link between Topamax and clefts

"The U.S. Food and Drug Administration (FDA) is informing the public of new data that show that there is an increased risk for the development of cleft lip and/or cleft palate (oral clefts) in infants born to women treated with topiramate (Topamax and generic products) during pregnancy."

Topamax is an anti-seizure drug that is also prescribed for migraine headaches.

You can read the entire FDA announcement here:

I am sure that for anyone who took this drug and did have a child with a cleft, this announcement is a difficult one. When a medicine is involved there can be a lot of guilt and anger that comes. Remember - we all do our best for our children, and that is all we can do!

Tuesday, March 15, 2011

Switching Craniofacial Teams

I thought this may be interesting for anyone else that is in a transient stage of life like we are...

My husband and I are both from southern California. Our little boy was born with a bilateral cleft lip and palate a year before my husband graduated from BYU. Clefts run in my family, and my cousin's little boy has a unilateral cleft and is seen at the Loma Linda University Craniofacial Team. He had finished all of his surgeries by the time he was 13 months old, so we anticipated a similar timeline for our little fellow. After some consideration we chose Dr. Morales as Ethan's surgeon, but were surprised to find that the timeline was vastly different than what was done in California.

Dr. Morales did three surgeries during Ethan's first year: placing the prosthesis, the lip and nose repair, and a partial repair of the soft palate. We were pleased with the work that he did and Ethan's repair looked amazing. My husband graduated in April and was on the accepted wait list at a medical school, so we were kind of in limbo during the summer. We talked to Dr. Morales about perhaps speeding up the surgery schedule because we'd be moving away, since we knew we couldn't afford to come back to Utah for Ethan's surgeries once we left; we had been on BYU insurance, but as starving students we couldn't afford the co-pays for all of Ethan's medical care, so Ethan was on Utah Medical. At one appointment Dr. Morales seemed to entertain the idea of doing things differently, but when we went in in July to schedule Ethan's soft palate repair for the fall, I asked again about changing things, and he responded by saying that lots of people traveled from far away (as far as Germany!) to have him treat their children. Not exactly the response I was looking for.

By the end of July we knew that my husband wouldn't be starting school until the next year and we needed to let our landlords know whether we were going to renew our lease for another year. We ended up feeling strongly that it was best to move back to California - so much so that we packed up and left in about a 2-day period. We had to cancel Ethan's surgery, since we wouldn't be covered by Utah medicaid, and MediCal or California Children's Services wouldn't cover an out-of-state surgery that could be done by someone in-state.

As soon as we got settled again, I called up the craniofacial team at Loma Linda to get Ethan in for an appointment. The soonest they had was at the end of October - 2 months out. At the appointment I was given several "assignments," including meeting with Ethan's new surgeon, Dr. Martin, who also operated on my cousin's little boy. Dr. Martin felt it best to go ahead and close the whole palate and gumline, since that is how he usually does surgeries and he didn't feel comfortable varying from what he normally does if it could be avoided. We were fine with that, and scheduled the surgery for late February. We also met with audiology/ENT and the pediatric dentistry clinic before going back to the clinic, and we found out that Ethan had mild to moderate hearing loss and some severe tooth decay (in part from all of the food that was continually stuck in his prosthesis - Dr. Martin's resident commented on how gunky it was when they took it out).

Ethan had his surgery, but Dr. Martin didn't end up feeling comfortable closing the gumline because the prior repair to the soft palate had created scar tissue, making it more difficult to bridge the gap between the palate and the gumline. He felt that if he had closed the entire thing, there would have been too much pressure and there was a very high risk of a fistula. We were pretty disappointed, because it meant that Ethan would still have to have the bone graft/gumline repair sometime between age 5 and 8.

We are still following up on Ethan's surgery, but he's looking good. One big lesson we learned is that once you start a treatment plan, you can't really switch half-way through. The timeline used in Utah works well, but once you start you can't skip any steps. Now I understand why Dr. Morales was so hesitant to switch things up. Dr. Martin had nothing but good things to say about Dr. Morales (he pretty well-known in the field); he just said that they do things differently.

There are things I like and dislike about both teams. I feel like the Loma Linda craniofacial team clinic is better organized and the process of making clinic appointments and follow-up were more straightforward, but I felt like Primary Children's Medical Center was a much more organized hospital and made for a much more pleasant and peaceful stay for Ethan on the actual surgery day.