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!

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