How do I prepare my child for surgery?

There are some good suggestions and resources on the PCMC webpage here.

There is also a pre-surgery class that includes a tour of the hospital, activities for various age groups to help prepare them for their experience the day of surgery and an opportunity for older children to discuss their concerns with a surgery nurse and child life specialist, and an opportunity for parents to ask questions. Classes are held Monday through Thursday at 4:30 p.m., and you can check in at the 2nd floor surgery registration area. If you would like to attend, you can register by calling (801) 662-2824 and giving them your child's name and age, the date you plan to attend, how many are coming, and the type of surgery your child is having. You can get more information here if you're interested.

More suggestions to come...

Dealing with Insensitivity

I have a lot to learn from my husband. I am generally pretty easy-going as far as dealing with people, but if you do something potentially offensive to a loved one, I turn into a fighter (I'm soon to be a lawyer; what can I say?). While John brushes things off, I get offended on his behalf. But he doesn't get ruffled, and sets a great example.

The last two years there has been a 5K and 1 mile walk in Provo Canyon that benefits Project Smile, a group that travels to developing countries to provide surgeries for children with clefts. We did the 1 mile walk this year (Ethan was a month old, and I wasn't about to be doing any running...). A short time ago John was wearing his shirt from the race in one of his classes, and a classmate noticed it. He asked if John knew what Project Smile was, and John confirmed that he did. Then, with a smirk and a half-laugh, he asked John "Have you ever seen one of those kids?" and started to make some kind of face. Before he got the chance to go any farther, John calmly said, "Before you say anything that you may regret later, my son was born with a bilateral cleft lip and palate." The student became understandably sheepish, then attempted a recovery by saying that his company printed the signs for the 5K.

My brother-in-law, who is in the same class and heard the exchange, jokingly commented to John about what he would have liked to do to that particular student's smile. I was with him on that one... But I am definitely proud of John's reaction and that he redirected the conversation and then let it go. And it got me thinking again about something I've contemplated in the past: how do we help people to be sensitive to facial differences? Surely that student will think twice in the future before mocking a birth defect. Here are a few additional thoughts and observations that I have had:

• Most people want to be sensitive and supportive when they talk to us about our kids, but don't know how. I try not to take offense when I see an effort being made, even if the way the words come out aren't exactly how I would like them. For example, before my son's lip and nose repair, I had a few people ask "Was he born like that?" My initial urge was to reply sarcastically, "No, I did that to him. What do you think?" But I refrained, because I know that if they are asking, it is usually because they don't know how to ask about a birth defect in a sensitive way. The word "defect" is a pretty harsh word when used in reference to a baby, so I notice that people avoid it, which is nice, but sometimes they have a hard time articulating the same idea with a different word.
• Children tend to stare, and also tend to say everything that comes into their heads. I have heard lots of kids commenting that "He has an owie!" or "Mommy, did he go to the hospital?" or "How come his mouth is like that?" I figure that by explaining rather than being defensive, I am helping one more child to grow up to be a more sensitive person. And when I demonstrate that I don't mind their childrens' curiosity, parents feel more free to ask questions, too.
• When I deal with people who are insensitive, I try to think about what I would like to teach my son about dealing with the same insensitivity as he grows. My hope is that my reactions can show him that we can be kind to others and share rather than getting angry or allowing our own self-esteem to depreciate.

Do you have any similar experiences or suggestions?

Surgeon Profile: Dr. Muntz

Contact Information:
 
Harlan R. Muntz, M.D.

Otolaryngology - ENT
Head & Neck Surgery
50 North Medical Drive
Salt Lake City, Utah 84132

801-662-1740

U of U Profile

Parent Comments:
"We really like Dr. Muntz. I know he has done several ... [mandibular] distractions for people who are part of this group. He is an ENT doctor. He also specializes in repairing cleft palates if that is a concern for your child. I like being able to have one doctor be able to take care of all of our daughter's needs. If your [child] has a cleft lip or something external, you will most likely need a plastic surgeon." 

"Dr. Muntz is a GREAT ENT. He's been my son's 4th ENT and we LOVE him. He's put in tubes, removed his tonsils/adenoids and dealt with Ayden's sleep apnea wonderfully!  That being said, I would not use an ENT for any kind of recontructive surgery like cleft repairs."

 "Dr. Muntz is a great doctor.  He is our son's ENT.  He put tubes in at 2.5 months and has been checking up on our son ever since.  I really like how positive, quick, but thorough he is.  We've never seen anything that we didn't like in him."

"He is great and has an excellent bed side manner."

 "I like Muntz as an ENT for personal reasons--he has an EXCELLENT bedside--which is good to have with an ear doctor when they are in pain."

"My son is seen by Dr. Muntz. We love him!!! I can not say enough praises about him, and the amazing surgeon he is. He preformed a Mandibular Distraction and repaired his cleft palate. The mandibular distraction is a HUGE surgery and I never once doubted the surgeon we choose. He often calls us in the evenings so my husband and I can both be on the phone when he tells us results from testing. There was never a time we could not get ahold of him, even in the middle of the night. And, he is always willing to see us on the spur of the moment, even if that means our appointment keeps him at the office till 7 at night. My husband is in his final year of medical school and he has decided to become an ENT because of Dr. Muntz. Good luck with your decision. It is a big one, but I know you will be pleased with any of the doctors at Primarys."

Before & After: Ashlyn

Ashlyn before surgeries

Just after lip & nose repair

Two months after lip & nose repair

Several months after lip & nose repair

Ashlyn has a unilateral cleft lip and palate. Her surgeon is Dr. Morales.

Special Bottles

There are a variety of bottles/nipples that are made specifically to help babies with clefts to eat. There is a quick description of the available bottles with pictures at the Cleft Advocate site, though there are several that you probably won't be able to find locally.

At Primary's LeAnn generally recommends trying the Pigeon nipple attached to the Mead Johnson squeeze bottle or a Playtex VentAir bottle with drop-in liners. I'll add more tips about this configuration, and possibly some pictures, as I collect them. Some speech therapists recommend this nipple because it allows the baby to do all the work and control the flow of the milk. The Pigeon nipple runs between $4 and $6 each.

The Mead Johnson squeeze bottle also comes with an elongated nipple with an x-cut opening, and some parents find that this nipple works well when their baby isn't getting enough milk with the Pigeon nipple, since there is no valve and the caregiver can squeeze the bottle to increase the flow. This is also one of the cheapest configurations, since a box of 6 Mead Johnson bottles complete with nipples runs between $16-$18 (and you can often get them for free from the hospital during your stay there).

Others use the Mead Johnson bottle with Similac or Nuk orthodontic nipples (the kinds they use with premies that have low suction).

The Haberman is another type of bottle that allows the caregiver to squeeze milk into the baby's mouth. The main drawback for this bottle is that they are expensive; upwards of $30 for each bottle. If you find that this bottle works best for your baby, you may try asking your pediatrician or surgeon if they have any that they can give you, as some parents have received a few this way.

There are video tutorials on feeding your baby at CleftLine, here (thanks Jennifer!). There are specific tutorials showing how to use the Enfamil (Mead Johnson), Haberman, and Pigeon bottles, which are fabulous.

This post (and pretty much all posts on this blog) will be under construction as I collect more information and input from parents!

A little self-congratulation?

How to change a Logan's Bow at 3:30 am when it falls off (without waking up your husband and all your neighbors):

1. Slowly remove the medical tape that is no longer holding the metal bow on properly from your baby's face in such a way that he doesn't scream. Don't mind that the nurses at the hospital that did this last cut the tape so long that it went into your baby's hair, so having it pulled off may be like getting his little sideburns waxed.

2. Cradle your already-cranky, recovering baby that has only let you sleep maybe 10 out of the last 72 hours in one arm while you collect supplies: medical tape, scissors, 3M prep pad.

3. Set your supplies down within arm's reach, then sit on your exercise ball, still with the baby in one arm, and bounce lightly to keep him snoozing, since you're not supposed to let him cry (ha!) especially without the bow keeping pressure off his sutures.

4. Hold the roll of medical tape in the same hand that's holding the baby, and with the other, cut the tape to the appropriate width and length and secure it on the bow. Don't stop bouncing, or he'll be screaming shortly.

5. Open the 3M prep pad that makes your sweet baby's face smell like Scotch tape (and which, by the way, your baby hates), and rub it on his cheeks where the tape will go, still without waking him up. Put the pad back in it's little packet and make sure to save it, since you only have 5 of these to last you a month, and they don't carry them at the local pharmacy.

6. With one hand, somehow squeeze your baby's cheeks in slightly and tape the bow down at the same time. Make sure it's stuck down tight in just the right spot, or you may have to do all this all over again.

7. Now that your baby is fast asleep, get him to take his baby Tylenol and drink another ounce of milk so that he doesn't wake up again in 10 minutes, hungry and in pain. Then place him quietly back in his crib to slumber while you stay up for another 30 minutes to squeeze out his next meal, and maybe blog about the whole experience while you're at it.

I wrote this post for my personal blog in a moment of euphoria after pulling off what I just described. I hope that it brings you a smile, and reminds us all that we should both give ourselves some credit for rising to the occasion when our kids need it and be thankful for the help we receive - both earthly and divine. 

Before & After: Parker

Parker before surgeries

Parker after surgeries

Parker has a unilateral cleft lip and palate. His surgeon is Dr. Siddiqi.

Before & After: Drew

 

 Newborn Drew

Drew after surgeries

Drew has a unilateral cleft lip and palate. His surgeon is Dr. Siddiqi.

How do I keep the arm restraints on after surgery?

Depending on your doctor and the type of surgery, you may be required to keep your baby in arm restraints for anywhere from 2 to 6 weeks or more after surgery in order to keep her hands out of her mouth. PCMC issues Snuggle Wraps, also known as "no-nos," which velcro on to keep babies from bending their elbows, like this:

Keeping the restraints on can be a daunting task, since babies are squirmy and resourceful. The following are a few tips that parents have found helpful:

• Make sure the restraints are the right size; they should go from the armpit to the wrist. If they are too small, the baby can bust out, and if they are too big, they won't keep the arms straight.
  
• Put the restraints on underneath a long-sleeved shirt that is snug in the arms to help keep them in place
• Put the restraints on over a long-sleeved shirt. Use a diaper pin to pin the restraint to the shirt at the top. Then fold the cuff of the shirt over the bottom of the restraint at the wrist, and place a second pin through the shirt and restraint there. (Some have said that a single pin in one place or the other does the trick)
• Put the restraint on over a long-sleeved shirt, then layer another long-sleeved shirt over that!
  
• The velcro tends to come off, so you may want to sew around the edges of the velcro.
• Wrap around the velcro with dragonskin tape, which you can buy at a pharmacy.
  
• Try another restraint. Some parents have liked the "Baby Hands Down" restraint, which tethers the baby's hands to their waist and allows a broader range of motion. They seem to be out of production currently, but you may be able to track down a used one, borrow one from another parent, or make one yourself. Here is a more detailed description of the Baby Hands Down.
  
• If your baby doesn't tend to touch their mouth, you may be okay without restraints as long as you keep a close eye on them. You could potentially just put them on at night and naptime, etc.
• If your baby squirms out of the restraints during the night, you may consider swaddling them over the restraints or using a loose swaddler like the Woombie to keep them from getting at their mouth in their sleep.
  

If you're not already in the topic on arm restraints, you can read about different kinds of restraints here.

You should take off the arm restraints for a significant block of time every day so you can massage and exercise your baby's arms. Some parents have expressed dismay that their children have lost arm strength and were set back in motor coordination and development as a result of being restrained for so long. Just make sure to keep a close eye on them and keep them within arm's reach!

Before & After: Preston

 1 week old

 

 Just after first surgery, 2 months old

Just after 2nd surgery, 6 months old

8 months old

Preston has a bilateral cleft lip and palate, and his surgeon is Dr. Morales.

What is Pierre Robin Sequence?

There is a short explanation at Wikipedia, here, another at CleftLine here, and some great resources at the Pierre Robin Network, here. Also, if you'd like to communicate with parents of children with Pierre Robin Sequence (PRS), the Pierre Robin Network also has a Yahoo! group akin to the Kids With Clefts Utah group, and you can join here.

Thanks to Amy, Jennifer, and Jamie for the resources! We will be posting more information soon!

Before & After: Ethan

3 months old

Just after surgery, 3 1/2 months old

8 months old

17 months old

 Almost 3 years

4 years old.

Ethan has a bilateral cleft lip and palate, and his surgeon is Dr. Morales. You can click on the pictures to get a bigger view.

What will the hospital room be like?

Generally each hospital room at PCMC has two beds/cribs separated by a curtain and a shared bathroom. Babies are given a hospital crib with adjustable sides. Some parents have had success asking for an adult-sized bed so they could sleep with their infants, but the general policy is against doing so. With each bed/crib there will be one rocking chair, one fold-out chair (where a parent can sleep), a TV, a phone (which was nice because my cell phone reception was poor), and a sink. Kind of your standard hospital set-up. The bathroom in the room does not have a shower; there is a shared shower on each hall.

Tips for hospital stays

The following is a compilation of tips for preparing for your stay at PCMC. Obviously you don't need to use them all, but I tried to include all the tips I could find...

• Bring a book or something you enjoy doing to keep yourself busy during and after the surgery.
  
• There is wireless internet access, so if you have a laptop it is nice for keeping in contact and having a distraction.
  
• If you don't have a laptop, there is a computer lab that you can go to. Ask the nurses for directions. The parent resource center, called the "Forever Young Zone" is on the 3rd floor.
  
• There are showers, but you probably want to bring toiletries to use. There is a soap dispenser, but that is all that is provided.
• Don't forget a toothbrush, face wash, hair ties, and extra contacts/glasses if you need them.
  
• Bring your wallet! There is a hospitality cart that comes by in the morning from which you can pick 3 items, but otherwise you will need to buy food from the vending machines or the Rainbow Cafe on the first floor.
• Bring a camera! You will want pictures.
• Dress for comfort. You may want to avoid light colors in case your baby has a little residual blood that drains out.
  
• Bring your own pillow and blanket; theirs aren't the most comfortable.
  
• If you'll be there for more than a night or so, you may want to bring a foam pad, because the fold-out chair is not overly comfortable either.
• Bring something familiar to comfort your child. Depending on their age you may want to bring a few toys or books or things to keep them entertained that they can still use with arm restraints on.
• I believe you can check out movies, so ask the nurse. You may want to bring a couple of favorites from home.
  
• Your child's diet will likely be restricted after surgery, and they may not like the hospital's selection, so you may want to bring some soft foods that they like from home.
• Bring comfy pajamas (also, something you don't mind the nurses seeing you in in the middle of the night). You may also want slippers for when you have to hop out of bed to get a crying baby or run to the vending machine or shower. If your child is walking, bring no-slip socks or slippers for them, too.
  
• Bring extra clothes to change into.
  
• Bring your own bottles/nipples. They generally have Mead Johnson bottles and Pigeon nipples there if you need them, but some babies don't like new, hard nipples, particularly after surgery. And if you use a different bottle or nipple, they may not have it for you.
• If you are using formula, bring some of your own, particularly if you use a unique or special brand.
  
• If you are pumping (or breastfeeding), don't forget your pump and/or pump attachments to use with the hospital's pumps. There is a room on the 4th floor with 4 or 5 pump stations, but you need your own attachments, and it is also nice to just be able to pump in your baby's room. You may want to bring a nursing cover or blanket though, since nurses will be coming in and out.
  
• You may also want a bottle brush, dish soap, and a dish towel to wash bottles and pumping equipment. There is a steam sterilizer in the 4th floor pumping area if you need to use it.
  
• You may want to prepare by looking at some of the pictures of babies right after surgery (particularly for lip and nose repairs) so you get an idea of how things will be.
• Have someone come to help you! Generally they only let one parent stay the night (though depending on which nurse you ask, they might make exceptions), but it is nice to have someone there to help tend and comfort your child, to go pick up any food, toiletries, or other items that you need, and just to provide some support and a listening ear. Take help when it's offered!
• You don't need to bring diapers and wipes; they give you a little box of wipes and a pack of Huggies after surgery.
• Bring clothes for your child that button or zip in the front, since you probably won't want to have to pull anything over their heads. Also, you may want something without feet, since nurses will need access to monitors/IV's in their legs/feet.
• Bring any medications that your child is taking, along with their prescriptions (the hospital may be able to administer some through the IV).
• Ziploc baggies often come in handy for random things.
• Babies often like batting around mylar balloons, and they can do it with arm restraints on. They are available in the gift shop on the first floor.
• Ask for the child life specialist on your floor, who will have activities for children.
• There is information for families of patients on the PCMC website, here.
  

If you'd like to see maps of the hospital floors, go here.
Do you have more suggestions? Please leave a comment!

A note on choosing a surgeon

I have tried to put together a snapshot of the surgeons that work at PCMC, including comments that parents have made about them. However, I found that this was only semi-helpful because everyone had so many good things to say about all of the surgeons. A recurring pattern in messages among the Utah Kids with Clefts group goes something like this:

"Our surgeon is Dr. So-and-So. We LOVE him. He does amazing work, and we like such-and-such about his personality and/or practice. But we have heard great things about all of the surgeons at PCMC, so you really can't go wrong."

While it is nice to know you can't go wrong, it doesn't help in the narrowing-down process for new parents that just want some direction. So you may want to contact the surgeons or even meet with them individually, and keep a couple of things in mind:

• Personality matters. Handing your little one over to a doctor is a hard thing, and even if you know your doctor will do a great job, it's tough when you don't mesh with their personality. Some people will love a doctor's bedside manner, and others will hate it. See how you feel, because everyone is different.
• Although most of the doctors at PCMC have similar timelines, there are some definite differences, including how they mold the child's lip or palate (using a removable molding device, a chain, or a surgically implanted prosthesis), how they do bone grafts (removing bone from the hip or using a chemical protein), etc. Talk to parents that have experienced both, and see how you feel (this is where joining the group is a huge help!).
• Who does your insurance cover? Usually you will have a choice between a couple of surgeons, but your insurance may narrow things down for you.
  

As a side note, in the profiles of each surgeon I tried to include comments that were more telling about the surgeons than "We love him!" There were many, many comments to that effect about all of the doctors. I also tried to take a representative sample of the comments without having any bias toward my son's surgeon. But so you know, we use Dr. Morales, and you can take that into account when considering the comments that I have included.

Join our group!

If you have a child with a cleft being treated at Primary Children's Medical Center, please join our Yahoo! and Facebook group! It is a great way to meet others, become aware of events, and get quick, personal, specific advise. We all benefit from sharing our experiences and helping and supporting each other. There are also lots of pictures posted if you would like to see the work of the PCMC surgeons. Go here and sign up on Yahoo!, and here to sign up on Facebook.

Surgeon Profile: Dr. Warnock

Contact Information:

Steven H. WArnock, M.D., F.A.C.S.
Premier Plastic Surgery Group of Utah
11762 S. State Street, Suite 220
Draper, UT 84020

(801) 571-2020

Cleft blog:  http://www.drwarnockcleft.com/www.drwarnockcleft.com/Home/Home.html
General Website: http://www.drstevenwarnock.com/cleft-lip-and-palate

Parent Comments:

"Dr. Warnock has been our surgeon and he has been excellent... We have appreciated Dr. Warnock's bedside manner and his willingness to spend a lot of time explaining procedures and reassuring us. He has also been open to alternate timelines for repairs, which worked for us since we wanted [our baby's] soft and hard palate repaired simultaneously at 9 months rather than wait until age 3 or 4 for the hard palate repair."

"Dr. Warnock... was great. I really felt like he answered all of my questions and was willing to take the time with us and our son. He explained the surgeries and what they would be doing in each of them."

"He is AWESOME! He did such a wonderful job on my son. People don't even know about the cleft unless we tell them anymore. We fly from [far away] to Utah for his surgeries and Warnock is so worth it."

"...We love him. I think he is excellent and has done amazing work on our sweet boy. He is such a kind man."

"He is so patient and willing to talk and answer questions any time. We have also emailed a few times and I have even sent him pictures... and asked for comments on healing."

"My son had a bilateral cleft lip and palate ... and we have Dr. Warnock. I'm so pleased with him, his mannerism and his openness to discussing options and really taking the input and opinions of myself and my husband into account. Dr. Warnock's bedside manner is great and he's always been very patient and very understanding. His staff I also have to comment on, since they are fantastic as well."

"I think he is awesome, he answered all of our questions and really put me at ease as far as the surgeries go."

"We see Dr. Warnock as our plastic and I LOVE him!! He is so good ... all of our questions. He is also so patient with our daughter!! Can't say enough good about him!!"

"I really like Dr. Warnock. He was able to answer all of my questions(I had a lot) He explains things very well and truly loves what he does."

"He has lots of experience and a good bedside manner. He is always open to questions and is good to responding to my emails. I tend to ask a lot of questions and bring up concerns, but he has always made me feel comfortable and willing ti accomodate my needs."

"Dr. Warnock did a beautiful job and he made us feel comfortable before and after [surgery]."

"Dr. Warnock ... is amazing. He takes the time to answer your questions and is very thorough. He did an amazing job on my babies soft palate repair. Dr. Warnock also trained under Dr. Morales 8 years ago and is really good."

"Dr. Warnock is our surgeon and he is wonderful. Very skilled, very professional, and very personable as well. No question too dumb! ;)"

"We used Dr. Warnock, and we have been very happy with him so far ([our son] has only had 1 surgery at this point). He is very good to answer questions and to listen to concerns. We also appreciate that his office is in Draper, since we live in Utah County."

"We used Dr. Warnock and love him. I felt very comfortable with him and he was very thorough in explaining what was going to happen and how to proceed. I asked a lot of questions and he really took the time to answer all of them and put me and my husband at ease!"

Surgeon Profile: Dr. Siddiqi

Contact Information:

Faizi A. Siddiqi, M.D., F.A.C.S.
The University of Utah Division of Plastic Surgery
30 North 1900 EAst, 3B205
Salt Lake City, UT 84132

(801) 581-5132

faizi.siddiqi@hsc.utah.edu

U of U profile

Parent Comments:

"We have used Dr. Faizi Siddiqi as our plastic surgeon and he has done a wonderful job... We were actually refered to Dr. Siddiqi [someone] who worked in same day surgery up at PCMC... She did a poll with all of the nurses up there and asked if they had a child with a cleft, who would they choose to do the surgery. Almost all of them said Dr. Siddiqi, so that is why we chose him and we are so glad we did."

"...He has been wonderful. I think his work is great, and he has an excellent bedside manner. He has done multiple prosthesis insertions/changes as well as [our baby's] lip repair, soft palate repair and hard palate repair. He also did a couple laser treatments to help decrease the redness of [our baby's] lip scar (the scar is a bit red because of genetics and the way he heals, not because of the surgeon) He has really gone out of his way to help us and to accommodate our needs rather then his...I'm sure you'll love him."

"We have used Dr. Siddiqi as our surgeon for both of our boys. We love him so much and he is so good to our kids."

"Our surgeon is Dr. Siddiqi and we LOVE him. He has performed miracles for both of our little boys and we will forever be grateful to him for the beautiful work that he has done. "

"He does such a great job and has great bedside manner. He is so patient with all of our questions and our kids really like him. "

"We ... like how personable Dr. Siddiqi is, and he has a great sense of humor."

"We went with Doc. Siddiqi and loved him!! He really took the time to make us feel comfortable before she had her surgery as well as after. He has great bedside manner and really takes the time to answer any questions we may have had. [Our baby's] lip looks amazing!!!!"

"I found out Dr. Siddiqi does a new procedure using some kind of protein stuff instead of bone. They have had wonderful success with it and recovery time is so much easier and faster. The protein actually makes their old bone grow new bone.... I heard people and medical professionals say how well Dr. Siddiqi does on the mouth and lip repair so I went to see him at Primary Children's Hospital. I'm glad I found him."

"We chose Dr. Siddiqi because he took time out of his day to come see my twins [one] has UCLP [the other] has BCLP a couple days after they were born. They were in the NICU at the time and he had the nurses tape the lips closed. I think that helped a lot with stretching the skin. I like him a lot he is the kind of doctor me and my husband love. Not sooo grumpy but will tell you what you need to know and all the other stuff. My one twin couldn't go home when the other one was ready so he gave us the choice to keep them both in or take one home.  We decided to keep them both in I thought that was super cool of him."

Surgeon Profile: Dr. Motoki

Contact Information:

David S. Motoki
Premier Plastic Surgery Group of Utah
11762 S. State Street, #220
Draper, UT 84020

(801) 571-2020

http://www.premierplasticsurgerygroup.com/davidMotoki.html

Parent Comments:

"We have been with Dr. Motoki from the very start and love him. [Our child]'s lip looks so good."

"My daughter's surgeon is Motoki, he is awesome. At first I didn't think that he had very good bedside manners, but as time has went on, he has gotten alot better. I was devastated at first and had a lot of questions, and his receptionist ... was great, explaining things to me, every time we went to his office she would come sit by me and talk. And I would even call her on the phone with questions and she would take time to talk to me."

"I would recommend Dr. Motoki. We have been with him from the begaining and he has always done a wonderful job with the repairs. I've never felt uncomfortable asking a dumb question, and he explains things well... He's been good at what he does, putting us at ease and treats us with respect. Sometime a specialist can come off high and mighty and I never get that from him."

"We have Dr. Motoki and we love him. I also love his staff."

"He is wonderful, and conservative, which I love!"

"His work is awesome."

"We chose Dr. Motoki and have been really happy with him so far. He's not the best at small talk, but you know he'll be straight with you about the good and the bad things that can happen. My husband and I really need that. Also, we can always get in touch with his nurse (who is super friendly and nice!) when we have questions."

"We also use Dr. Motoki for [our child]'s cleft palate and he has been wonderful. I don't know if you know this but Dr. Morales trained him 20 years ago and we are confident in his skills. I could go on and on about some other reasons why we chose him but I won't bore everyone with that. I have been very frustrated with other Dr.s on the team and Dr. Motoki has validated them and supported our choice to have [our child] treated by another ENT. So remember when choosing a surgeon there are a lot members involved and the surgeon is a small portion, but very important one."

Surgeon Profile: Dr. Morales

Contact Information:

Dr. Louis Morales Jr., M.D.
5089 S. 900 E., Suite 100
Salt Lake City, UT 84117

(801) 743-0700

pclmoral@IHC.com

louismoralesmd.com
(note: the website is for all plastic surgery, and doesn't particularly address cleft palate repair, though it does review his education, credentials and awards. Don't be surprised if some interesting before/after pictures of other cosmetic surgeries pop up. This is the case for all of the surgeons' websites that I've visited)

Parent Comments:

"We use Dr. Morales and we love him. We have 2 little boys with clefts ... Dr. Morales has done all of their surgeries ... so we have a great deal of trust and respect for him."

"Dr. Morales is our surgeon, and we LOVE him. He does an excellent job. He is great with [our child] who is a busy, talkative [boy]. He has been [our son's] surgeon since birth... I would
HIGHLY recommend Dr. Morales, He is simply the best. He is calm and reassuring and he always takes the time to answer all my questions and concerns about a procedure."

"My opinion is that Morales does the best lip repairs. We have Schmelzer and we really like him. But, I still think Morales is best for lips. I like Schmelzer's time-line for other surgeries better, but if you are only dealing with the lip and not the palate then I would definitely vote Morales." (Dr. Schmelzer was Dr. Morales' partner, but now has moved to Arizona)

"We have used Dr. Morales ... and just love him. He has been practicing for over 25 years, so he is very well experienced and he continually amazes us with the work he has done."

"Everyone has their own experience and every cleft is different, but what Morales did for both of my sons worked very well for their speech. He also assured us that he uses his technique for a reason and that he has had not only very good speech results this way, but also a very low rate of a need for p-flaps. I'm not trying to say that one doctor's way is better than another, but with both of my boys, the way he has repaired it has really made for optimal speech results, so I have a lot of faith in it. "

"Our surgeon is Dr. Morales and I do personally think he is the best. We are SOOOO happy with the results!!!! You really can hardly tell that he had a cleft now and it was very severe when he was born."

"My son ... had 5 surgeries in the first year of his life Dr. Morales is his surgeon. I am very happy with the care and time he took with [my son] and answering all our questions."

"We had Dr. Morales and we were ... warned of his bedside manner. I thought he did a wonderful job and he was always very nice when we met with him."

"We have Dr. Morales and have had a really really wonderful result. A lot of people don't like his bedside manner but we think he is an artist when it comes to surgery. My son has a BCLP and it was quite severe but now you can hardly tell."

"We have Dr. Morales at PCMC. We LOVE the results of our son's surgeries so far. He doesn't always have the best bedside manner - very professional but not extremely friendly - but we think he is an amazing surgeon."

"Dr. Morales is very well known throughout the country in craniofacial and cleft reconstruction. He had been handing [my child's] case, but then suggested that we have Dr. Schmelzer [perform one particular procedure]. Dr. Morales felt that Dr. Schmelzer had more experience with the apparatus from training under Dr. Ferron in Dallas. I was extremely impressed with Dr. Morales that he would put his ego aside and suggest that another surgeon perform the procedure."

"Our surgeon is Dr. Morales and we think he's fantastic! (The only complaint I've heard about him from anyone is that his bedside manner leaves something to be desired, he's not the warm, fuzzy kind of doctor, but we've never had anything but positive experiences with him.)"

"Dr. Morales did [my child's] lip/nose repair. Totally amazing job, but I feel that my office visits lacked, so I changed to Dr. Warnock... I do not enjoy saying that I changed from Dr. Morales, but I am too sensitive and his bedside was really bad during a hard time for me."

"A family member asked the coordinator of the craniofacial team at Loma Linda (in California) if she recommended anyone from PCMC, and she immediately recommended Dr. Morales. So far he has done our son's prosthesis and lip repair and has been amazing. He is pretty to-the-point in our appointments, but we like that about him, and he is friendly and glad to answer our questions. And we love his staff, too!"

"I also was born with a cleft lip/palate. Dr. Morales did the last few surgeries that I needed. In those few surgeries, he revised several of the surgeries I had already had... Almost every single person that finds out about my birth defect are amazed at my repair. They can't even tell I have a cleft lip/palate... Dr. Morales is also who was recommended by my ENT and pediatrician...
As a mother, what I have not liked about Dr. Morales is not all important information was shared with us. For example, somehow we weren't told about the restraints required for TWO MONTHS until after his surgery. It really hasn't been that big a deal ... BUT, the surgery was quick and efficient... Also, if bedside manner is super important to you, you may not like Dr. Morales. Although, my husband thought he was fine."

What is the cleft palate "team", and when should I meet with them?

The following are some guidelines provided by LeAnn Roling, the previous Cleft Palate Clinic Coordinator at Primary Children's Medical Center:

The team is made up of:

• Dr. Yamashiro - team director, orthodontist
• Ear, Nose, and Throat Doctor
• Plastic Surgeon
• Speech Therapy/Feeding Specialist
• Social Worker and social work survey
• Finance person from the Utah Department of Health
• Audiology Visit
• Updated: Natalee Lyon - Cleft Palate Clinic Coordinator

If your little one is not having problems with eating, failed hearing screens, or ear infections it is ok to wait to see the team until 12-14 months of age. At that age we want to start working on speech and want the entire team involved.

You will come to team before that if:

• Your surgeon requests it
• Your baby is having feeding problems and/or any kind of concern that several members of the team should address.

Then we will plan to see your child once a year in the team setting, but of course you will follow up with single members of the team more frequently than that.

What is a Cleft?

There is a fairly thorough explanation about the nature of cleft lips and palates on Wikipedia. Anna also gives a great explanation on her blog, "Cleft Notes," here. Essentially, a cleft is an opening that is left in the lip and/or the palate (roof of the mouth) when they fail to fuse normally during gestation. It occurs in about 1 in 500 to 750 births, but that number is closer to 1 in 450 in Utah. It is the most common birth defect. The exact cause is unknown, though the condition can be hereditary. It is generally said that some combination of genetics and environmental factors likely cause clefts.

Getting Started

The objective of this blog is to work in conjunction with the Kids with Clefts Utah group to provide information for parents and families of children with cleft lips and/or palates who are treated at Primary Children's Medical Center in Salt Lake City. Because our experience is with PCMC, the information here will be most relevant to children treated there. However, much of this information should also be helpful to all parents of kids with clefts, and so if you're visiting from elsewhere, welcome! I hope that this site can provide a user-friendly place to find information and shared experience from other parents. If you have something you can contribute to a topic please add your comments to posts. If you would like to contribute something longer, I would love to have you guest-post, so let me know. I think that all of us will be enriched by sharing both information and experiences. Thanks for visiting!