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, October 27, 2010

Sleep Apnea

As parents of children with clefts, you may want to be on the lookout for signs of sleep apnea if your child has not already been diagnosed with the condition.

"Preschool children with cleft lip and/or palate have a risk of obstructive sleep apnea that is as much as five times that of children without cleft. Obstructive sleep apnea appears to be underrecognized in this group of children."

J.E. Maclean, K. Waters, D. Fitzsimons, P. Hayward, D. A. Fitzgerald (2009). Screening for Obstructive Sleep Apnea in Preschool Children with Cleft Palate. The Cleft Palate-Craniofacial Journal: March 2009, Vol. 46, No. 2, pp. 117-123.

Here are some of the night-time symptoms of children with sleep apnea:
Difficulty breathing while asleep
  • Pauses in breathing
  • Snoring
  • Restless sleep
  • Heavy sweating while asleep
  • Nightmares/night terrors
  • Bed wetting

Daytime behaviors may include:

  • Sleepiness during the day
  • Aggressive or hyperactive behavior
  • Learning disabilities
  • Morning headaches
  • Discipline problems
  • Failure to thrive

For kids with clefts, apnea may be resolved through surgery (such as a mandibular distraction for a child with Pierre Robin Sequence), or by using a CPAP (Continuous Positive Airway Pressure) machine for sleep.

Here are a couple more articles on childhood sleep apnea:

There are myriad articles if you are interested in finding more information online!

Would any of you like to share your experiences with sleep apnea in your children? If so, please email

Surgeon Profile: Dr. Kjar

Contact Information:

Premier Plastic Surgery of Utah
1551 Renaissance Towne Dr #360
Bountiful, UT 84010

(801) 295-9105

Parent Comments:

"Doctor Kjar does things differently that anyone in the state but does it the same as everyone in the country. This is our treatment plan:

"He had his lip repair on October 12th. It was a great success and he looks great! I saw someone in Walmart today that I haven't seen in years and when I told he had just had his lip repair surgery she told me she would have never guessed anything had even been wrong.

"He will have his palate repair three to six months from now. Dr. Kjar likes to repair earlier for a few reasons. The main being the palate muscles are repaired correctly if the whole palate is repaired in one surgery instead of two. This helps with speech among many other things. He will have to have a NAM (retainer from Dr. Yamashiro) until that point. But we are confident with his plan.

"Then follow basically the same timeline as everyone else. Bone graft around 7 years old, possbile mid-face surgery, etc. The mid-face surgery can be necessary no matter when the palate is repaired according to the research I have done. By mid-face I mean, the upper jaw doesn't grow forward like it should and has to be repaired.

"On top of the treatment plan working for our needs, our doctor is wonderful. We never have a problem getting in to see him, he is completely available any time of the day. He have his office number, cell number, and pager number. His staff is knowledgeable and very helpful."

My milk supply is dropping. What can I do?

Here are some recent tips from group members:
  • Pumping is supply and demand. Try increasing the time you pump, even if you don't seem to be producing more milk immediately; you should see results in a couple of days. 
  • Also try increasing how many times you pump per day. You may be able to cut down again once your supply is established.
  • Make sure you have the right size horns for your pump. A lactation consultant can help you determine if yours are the right size.
  • You may also try fenugreek supplements or lactation tea to help boost your supply.
  • Drink lots of water!
  • Try to relax as you pump.

Friday, July 30, 2010

Utah Kids Group

There is another Yahoo group called Utah Kids that is similar to the Kids with Clefts group, but the kids all have special health care needs, not just clefts. If you have questions or are looking for support for other health issues, this may be a great resource for you!

Here is the link! 
Thanks, Jenny, for sharing this with the group.

Monday, March 15, 2010

Arm Restraints: Honey Cuffs

Our very own MeriAnn has devised a new arm restraint that will be debuting this summer! They look nice and soft and oh-so-much more comfy than the hospital-issue Snuggle Wraps. Here is a link to her web site:

These may be helpful for your upcoming surgeries!

Wednesday, March 3, 2010

Monday, March 1, 2010

Spanish Blog

I am working on a Spanish version of this blog to help more local parents. You can view it here: If you or anyone you know would like to help with content writing/translating to Spanish, feel free to let me know.

A letter from LeAnn Roling


I have asked Jenny to post this letter because I wanted all of you to know I will be leaving my position as the Cleft Palate/Craniofacial Coordinator as of March 12, 2010.

Giving you guys this news is harder for me than anything else. Watching your beautiful children grow and helping to answer your questions and address your concerns has been the most rewarding part of my job. I can't express how much I will miss all of you and your children. Their care and happiness has been a passion of mine for the past 8 years and moving away from this field will leave a big hole in my heart. It has been my privilege to know all of you and participate in your lives in some small way. I know I have said this to you in the past but you are all amazing people and I am a better person having spent these past eight years working with you and your families.

I will be moving on to take a position at the Veteran's Administration, but I will never forget you!

With deepest regards,

LeAnn Roling RN, MS
Cleft Palate/Craniofacial Coord
Primary Children's Medical Center

Thursday, February 11, 2010

How much does surgery cost?

Of course costs will vary from child to child, but here are the break-downs from a couple of parents:

Hi! I know that costs vary wildly across the country and with length of hospital stay and severity of surgery, but here's a basic breakdown of our cost. [Our child] had a wide cleft that was repaired at 25 months (she was adopted at 23 months, that's why the surgery was later than "normal". It was her first and only repair and she had never had a prosthesis or any pre-work done. She was in the hospital for almost exactly 24 hours door-to-door.

Here are the pre-insurance costs at Utah's Primary Children's Medical Center:
Anesthesia - $1200
Plastic Surgeon - $2900
Hospital for 24 hours (OR, room, nurses, meds, oxygen, etc) - $6300
ENT (ear tubes, both sides) - $950

We had surgery on my boy's soft palate in December and are finally starting to get the billing information now. Ours was a little more money because he had ear tubes put in, a tiny lip revision and an additional day in the hospital because he refused to eat, but our total was $8127.94...

The room and board for 2 days was $4332.36
Pharmacy was $484.66
IV Therapy (for longer than normal) $97.05
Supplies, etc... 183.73
Operating Room Procedures were $2157.87
Anesthesia was $282.32
and Recovery Room $589.95 (he had to stay there awhile because they couldn't get his pain under control).

New Email

I started a new email to go in conjuction with the blog. If you have anything you think would be good to post, have experiences or information to share, or have any comments or suggestions about the blog for me personally, feel free to send them to

Suction, Straws, and Sippy Cups

Transitioning from the bottle to something else can be extra challenging for kids with clefts, since they often have very little or no suction until their palates are closed. Here are some ideas from parents:

"The only sippy cup that [my child] could ever figure out was the Nuby cups with the soft top. Eventually he learned to suck from a straw so he could use the sports type cups with the straw in them. He is 5 years old now, still has the alveolar cleft with small fistula, and still can't suck out of most sippy cups."

"My boys weren't ever able to drink out of the hard plastic sippy cups unless I took out the valve (which unfortunately made them leak if tipped). They did figure out a soft topped one (material similar to the haberman nipple)....we did cut the sippy cup holes a bit bigger too (since the spout was soft plastic), and that seemed to help- especially at the beginning. My boys also could use the hard spouted NUBY cups they sell at Walmart, but we had to of course take out the valve. And then that made for lots of messes in the car and in diaper bags and on carpet, but oh well! ... But eventually both wanted to drink out of a cup without a top. They both did learn how to sip out of a straw though around 2-3 years old, and that was a surprise!"

"[My child] used the soft sippy cups. I think they are a dollar at walmart. I am not sure on the price now. I had [him] off the bottle and he lost weight because he would get too tired drinking from a sippy cup. I would try a few different ones. Look at the grocery store too, they sometimes have one that will work. I wouldnt stress too much about being off the bottle at one. I did and then he had to go back on it anyways. Good luck. Every kid is different and they all have there own time schedule."

"I'm sure every child is different but my son had a very wide cleft and was never able to use a sippy cup with the no-spill valve in it, even after the cleft was repaired. He used a regular baby bottle nipple with a slightly bigger slit cut into it to learn to suck. We also had good luck with the disposable sippy cups because you only have to suck lightly to get liquid to come out of it. Its a harder plastic than the nuby so biting won't help (which is good). For the straw, start by lifting the straw out of the glass holding the liquid in by keeping your finger at the top and as he sucks, slowly let some of the liquid out of it. Then he will learn that he has to suck to get it out. Cutting the straw and putting it in a shorter glass makes it much easier too because less suction is required to get the drink to the top. Good luck."

"To help with learning how to sip out of a straw, our OT taught us this cool training trick: you can take a mead johnson, take a nipple and turn it so it is upside down (dipping into the bottle rather than protruding out the normal way from the top), then insert a small straw into the nipple hole (you may need to cut the hole larger), but you do want the nipple snug around the straw. Then let your child practice putting their mouth around the straw (this takes some practice to be able to pierce those lips), and gently squeeze the bottle, so a bit of juice/water comes out through the straw. This will just get them familiar with how a straw feels/works. They don't necessarily suck at first, but will learn how. Another good way to get them to start learning how to use a straw, is get a milkshake in a flavor the child likes. Suck up a bit of it through the straw, then plug the top of the straw with your finger, so the straw remains full. Then take the straw out of the milkshake and put the unplugged end into your child's open mouth, and then unplug the other end by releasing your finger. It makes all the milkshake that was in the straw fall out and into your baby's mouth. This also gets them familiar with a straw and how it works. We practiced these a bit with my boys, and with Jimmy, one day, we were in a restaurant and he grabbed my drink (which had a straw in it- I thought surely he wouldn't be able to get anything out), and he started sipping!!! It was amazing! I didn't even realize that he would be able to do it on his own yet, but he could!"

"My little guy's occupational therapist suggested getting an empty honey bear and fitting a straw in the hole, that way you can squeeze liquid up into the straw. This is similar to the suggestion using the Mead Johnson bottle, but a lot cheaper! (They are 69 cents at Macey's here in Provo). The bendy straws work perfectly because the part that bends is just big enough to plug the hole and make it airtight, though I think if you could find clear straws it would be even better so you can see how hard to squeeze."

Monday, February 1, 2010

Where Can I Buy Pigeon Nipples Locally?

Good news! There are now three places where you can buy Pigeon Nipples in Utah:

PCMC Outpatient Pharmacy
Riverton Hospital Pharmacy
Dixie Regional Pharmacy in St. George

Sunday, January 10, 2010

How do I soothe my baby after surgery without a binky?

Here is a conversation from the Kids with Clefts group that is typical of one that pops up periodically:

My [baby] is going to have his first lip surgery in two weeks and they said no binkies after that. I'm wondering how people have dealt with this. It seems like such a traumatic time for a child, yet you can't comfort them like they were previously used to. Does anybody have any suggestions? All of my other children have always used binkies or thumbs so I'm at a loss.

Answers from Parents:

"My son wanted a binky after his first surgery so bad, but it hurt him when he even tried. We had a special blanket for him that he cuddles up with that soothes him now that worked the same - but really good luck! If you can get him started on a soft blankie or something else that would comfort him before the surgery, it won't be nearly so traumatic after to just take the binky away."

"We went through the same issue with our son at 4 months--the way he always went to sleep was with a binkie snuggled right into someone's chest. . obviously he couldn't do that after surgery. We started him getting used to a snuggly bear before surgery that we always gave him to help him calm down and started using the binkie less--trying to comfort with rocking, etc.. He couldn't chew or suck on the bear, but I think just having the comfort object helped him through.

"Now, we're 1 month out from the surgery and our little boy doesn't want the binkie now that he can have it. . .he loves that bear, though :)"

"My reply is similar to he others who replied to our post. We found something to try to replace the binki right before surgery. With [our baby] it was a special blankie (that I took with us to the hospital) and I would sing to him to soothe him. It was hard the first few days without the binki. I would let him have his Bottle in his mouth just to suck on someimes. But he really didn't want it much because of the pain in his mouth.

"Now, he is 2 months post-op and he can have a binki. At first he didn't want it, but now he loves it again and can even keep it in his mouth! (which he couldn't do before). I hope this helps. Good luck with the surgery!"

"It is really hard for a little while to get them to be able to relax and soothe themselves without something in their mouth. I just held [my baby] a lot, sang to her, and loved her. Obviously it is very hard on you too, and you won't get a lot of sleep but at the end of a month, it seems to get much better. The process is just hard, for both you and your baby, you just have to keep loving them and fight through with them. They are resilient and will figure something else out, it just takes time. Hang in there!!!"


Facing a new baby without the help of a binkie can be a daunting thought, particularly, it seems, for those who have relied on them with previous babies (I'm only on my first, so I wouldn't know, but I had the feeling that it wasn't quite so bad since I didn't know what I was missing...). It seems like a lot of parents have questions right away about pacifiers, including:

1. Will my baby be able to use a pacifier at all?
2. Can my baby have a pacifier after surgery?
3. What pacifiers work best for cleft babies?

I'll share what I know, then include a few other parent comments on the topic.

1. Will my baby be able to use a pacifier?

From my experience, this is another "it depends" answer (fully unsatisfying, I know). Babies with clefts generally don't have good suction or lip closure, so they have trouble keeping a pacifier in without help. However, after the lip repair, babies can often take a pacifier and keep it in reasonable well (though you may have to try a few different kinds to find what works best for your little one). Lots of babies with clefts love the binkie.

2. Can my baby have a pacifier after surgery?

Again, it depends on your doctor and on which surgery. Here is my experience:

Dr. Morales was our surgeon, and after the first surgery to put in the prosthesis, he said he didn't have a problem with us using the pacifier occasionally. We weren't sure if it would be allowed, so we tried to use it only if we were out in public where we needed our little guy to stay quiet (and, to be honest, to cover up his cleft if I wasn't up to having people stare) in the hopes that he wouldn't get hooked on it. So I'm not sure how Dr. Morales would feel about heavy usage just after surgery, but it wasn't out of the question at any rate.

After the lip repair, we weren't allowed to use the pacifier for about a month (with good reason; I'd have been afraid to use it!). However, at the one month check-up, Dr. Morales actually encouraged using a pacifier because he said the plastic phlange on the pacifier would massage the scars and help stretch them out. So after that we did some binkie shopping and our little guy was hooked until his next surgery.

After the soft palate repair I think we could have gone back to the pacifier after a short time, but our little man wanted nothing to do with it. I tried lots of times over the ensuing months, but he wouldn't have it. And I've heard of other kids that just didn't want anything in their mouth after surgeries.

3. What pacifiers work best?

As with most baby products, this differs with each baby. Here are some things that I have heard/found:
  • Some people like the Soothie pacifiers because they are all one piece, which helps some kids get more suction on them. I found them impossible to keep in, and friend told me they were designed so that babies can't keep them in. Confusing! Since these are the ones they usually give out at hospitals, you will probably end up with at least one free one that you can try out on your baby
  • Others like "Wubbanubs," which is basically a soothie pacifier sewn onto a little stuffed animal so that the baby can hold it in more easily. Here is a link to the site (though they would be really easy to make, and much cheaper!). You could use this idea with other pacifier brands, too.
  • Someone suggested getting pacifiers for older babies, since they are bigger and thus easier to hold in. My little guy didn't go for it (too much of a mouthful?) but I know others have.
  • What worked for me were the Playtex orthodontic pacifiers with the curvy neck. Since the neck was long, the baby could close his lips around it and hold it in. He got fairly good at it after a while.
Any other suggestions or thoughts? I'll be glad to add them!