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!

Sunday, November 15, 2009

Pumping Tips

Here are some tips that one of the pros at Primary's on pumping gave for one mom:
  • To begin with, if the pumping is painful, something is probably wrong.
  • Over 50% of the time, it is that the flange size is incorrect.
  • Medela and Ameda both have several flange sizes. A good website for mom to look up is which shows a short video of a mom pumping and how it should look if the flange size is correct.
  • The other possibility is that this mom is using a small electric pump that is meant only to be used a few times per day. She really needs to rent a hospital grade electric pump. This will be more comfortable for her and also much quicker.
  • Milk is made on supply and demand.
  • Most mom's need to pump at least 6 times/24 hours to have enough milk.
  • Decreasing to only 2 - 3 times/24 hours will significantly decrease production most likely to less than 50% of the need.
  • Mom's goal for total production should be 24 ounces/day when baby is 2 weeks old and should be ~30 - 32 ounces per day when her baby is a month old.
  • Mom's milk is made perfect regardless of how much stress she is under. The problem with stress is that it impacts production resulting in less milk. Hope that helps!
And some more tips:
  • More suction doesn't always equal more milk; it may just make you sore, resulting in less milk. Keep the suction at a comfortable level; you may want to start low, then increase it slightly once milk starts flowing.
  • You may also want to try varying the pumping speed rather than the suction if your pump has that capability.
  • Drink lots of water and get plenty of calories and nutrition! Like stress, lack of nutrition won't significantly decrease the quality of your milk, but it will decrease the quantity you produce. Breastfeeding/pumping can burn 200-600 calories per day (depending on who you ask).
  • There are great tips and guidelines on the Ameda website for mothers who exclusively pump here.
  • There are also tips from Dr. Sears here, including tips on massaging prior to and during pumping. I have found this to be really helpful in producing more milk.
  • There isn't always something wrong if pumping is painful, particularly at first. Breastfeeding is generally uncomfortable at the start, and pumping is no different. However, if it continues to be really painful for an extended time period, then some adjustments may be helpful.
  • Have your baby sit with you while you are pumping; it can help you to produce more. I used to feed my baby while pumping - it was more efficient, I was more likely to pump as much as he needed, and it helped my let-down.
  • Figure out a way to pump hands-free. They sell bands that hold up the horns online, but they are a bit pricey. You can also try cutting slits in the front of a sports bra, or just propping the horns in your regular bra by pulling the cups up over the bottom of the horn and pulling your shirt down over the top. This way you can hold your baby or do other multi-tasking that helps the time to go by.
  • Have snacks, water, etc. on hand at your pumping "station." Make it a relaxing spot.
  • Get an extra set of horns so that you don't have to clean them as often. You can also put them in the refrigerator between pumpings to reduce washings (since the milk on the horns will stay good in the fridge).
  • Some women take Fenugreek supplements to increase their milk supply. They are available at health stores like GNC. You may want to ask a lactation consultant about it.
  • You may also use a little bit of vegetable oil to lubricate the horns and reduce irritation; creams like Lansinoh are often not smooth enough.
  • There is also a Yahoo! group here for mothers who pump exclusively for medical reasons.
I'm sure there is more wisdom out there, and I'll add more tips as I come across them!

One final note: if you are in the beginning stages, be encouraged! It's not easy, but it can be done, and you may find that it gets easier with time. My son is 9 months old now and eats 5 times a day, and I have been able to cut down to 4 pumpings a day and haven't had to supplement with formula. I tried to mimick nature and decreased my pumpings as he spread out his feedings. That being said, if you aren't able to pump for your baby, don't let yourself feel guilty about it! Everyone's circumstances and bodies are different. It is easier for some than others, and with a baby with special needs, you have enough stress on your plate! Plenty of babies thrive on formula. I think that I have had it relatively easy, but even so I have been tempted to quit many, many times. And if I have another baby with a cleft, I don't know if I'll be able to pump like I did for my first; we'll have to see what our circumstances and my sanity are like then.

Will I be able to breastfeed after surgery?

The answer to this isn't particularly clear. Some babies with clefts are able to breastfeed from the beginning, particularly if the cleft only affects the lip. And a few babies are able to gain suction after a full or partial repair, but often the combination of little to no suction due to the cleft and having chewed a bottle to get milk rather than suck makes it difficult for babies to transition to breastfeeding. Here are a few comments from parents that were posted to the group:

"I also had high hopes for breastfeeding after the first surgery. However, [my baby] was just so used to basically a chewing like motion with his feedings that he was unable to suck at all. Dr. Warnock explained that some babies are able to breastfeed if your letdown is powerful, but you would likely still need to pump in order to get the hind-milk since suction is needed for that. I felt that it was just too frustrating for him and me that it interfered with the process. Every situation is different so I encourage you to give it a try."

"I think that if you want to give it a try, then you totally should!  I would contact a Le Leche League person, to help you have the best chance possible.  However, I do know that after my son had the hard and soft palate fixed (about 1yr old) he was still not able to even use a normal sippy cup.  It is not just the fact that the holes are all gone... it's also an issue of these kids not using the muscles in the soft palate... so it takes a while for them to learn to use them and to have the normal sucking strength.  So, it may take you longer, but if it is something you really want to do, then  you should go for it!"

"I think that if your baby's cleft is small enough and the prosthesis seals off the cleft, you might be able breastfeed. Medela makes a Supplemental Nursing System that you could try. It enables babies to feed at the breast before they know how to suck by giving them either expressed milk or formula through a device that is hooked up to you. It might be a good way to try to see if your baby can suck without starving him or losing your milk supply. I read an article once about a woman whose baby's palate was completely repaired at 6 or 7 months and she used this until her baby mastered sucking."

Monday, November 9, 2009

Surgery Day

I know that someone in the group wrote a great, detailed description of what happens when you come in for surgery. Unfortunately, I haven't located it just yet. So while I am here in the waiting room, here's a quick rundown of surgery day.

The business day before surgery (i.e. Friday if surgery is on Monday), the hospital will call to tell you what time to come to the hospital, what time your child can eat, etc. The call will usually come in the mid to late afternoon (they called me at 2pm on Friday for Monday surgery this time, but last time it was closer to 4pm). Because of the risk of getting fluid in their lungs, babies cannot have any food or drink for several hours before surgery. This time, Ethan's schedule was this:

Solids: up until midnight
Breastmilk: until 5:15 a.m. (4 hours before surgery)
Pedialyte or Apple Juice: until 6:15 a.m. (3 hours before surgery)
Check-in: 7:45 a.m. (1 1/2 hours before surgery)
Surgery: 9:15 a.m.

When you arrive at the hospital, you check in at Same Day Surgery on the second floor. If you go up the elevators on the south side of the hospital (the opposite side from the Rainbow Cafe), the check-in area will be right near the elevators. When you walk in the room, there is an electronic kiosk to your right, and someone should be there to give you a beeper. They will beep you to go sign paperwork and give your insurance information at the desk, then they will beep you again to see a nurse before surgery.

Once they beep you the second time, a nursing assistant will weigh and measure the child, then you'll go in a room where they'll check temperature, blood pressure, oxygen, etc. and give you jammies to change them into. Then a nurse will come in and look at ears and mouth and listen to heart and lungs, then take you to the surgery waiting room. Last time the surgeons were running behind, so the nurse let us give Ethan some additional Pedialyte (so you might want to have some on hand, just in case).

While you are in the waiting room the surgeon will come talk to you and answer any questions that you have, then the anesthesiologist will come and do disclosures and have you sign paperwork. Then you will walk with the anesthesiologist down the hall toward the OR, and then the anesthesiologist will take the child in and send you to yet another waiting room. This point is one of the hardest, because you have to hand your baby over. We have been lucky, because Ethan has been fairly easy-going about it. Before the last surgery, he gave me a big smile as we handed him over. And this time he was totally happy to go off with the friendly anesthesiologist, who told the nurse that he was a sweetie and just cuddled up to her as he went to sleep. I'm not sure how I would have handled it if he was crying... =(

When you get to the surgery waiting room you'll check in with the people at the desk, then you can go get something to eat at the cafe or do anything else you need to do. Food and drink are welcome in the room, there is a courtesy phone and a TV. If you're there in the morning, a courtesy cart comes by between 10 and 11 with some complimentary snacks.

After the surgery is over, the surgeon will come tell you how it went, then once the child is waking up they will call for one parent (only one at that point) to go meet the child in post-op. You will stay there until the child is comfortable, then you will meet up with any other family members and head up to the 4th floor to a room (unless it's outpatient surgery, in which case you'll stay in the PACU area until you go home, which is usually as soon as the child has taken in enough liquids).

For me, this is where the hardest part begins. Ethan tends to wake up quickly and angrily, but the nurses are good at getting his pain managed and with some comforting he settles down fairly quickly. Then the next day is spent comforting and feeding and navigating several monitors plus an IV. Not to mention attempting to work in pumping milk and catching a few minutes for myself to eat and catch a few winks. We have been really lucky that Ethan hasn't had to stay for more than 24 hours as of yet; getting released and having all of those wires disconnected is always the greatest relief. Then we pack up, go home, and pray that it's not too long before Ethan gets to sleeping through the night again so that we're not perpetually exhausted. Yay for the end of surgery day!

Saturday, November 7, 2009

Adopting a child with a cleft

This is the experience of the Morningstar family. Thank you so much to them for sharing! If you would like to read more about their experience, you can see their wonderful blog here.

Parenting is not for the faint of heart. Adoptive parenting is for those with extra guts. And adoptive parenting of a child with a cleft palate? Well, that's left for those with an extra well-developed sense of adventure.

In January 2009 we traveled to Karaganda, Kazakhstan to meet and welcome 22-month-old Alexandra Grace Morningstar into our family.

Sasha (short for Alexandra) was born with a wide bilateral cleft palate and (maybe) with mild Pierre Robin Sequence (PRS) and spent most of her early childhood in hospitals and the Botakoz Baby House. When we first learned about Sasha's cleft palate, we were torn - we knew that this was an easily correctable condition here in the US, but we also knew that it compounded the scads of the unknowns that are intrinsic to adoption. So we started researching.

After talking to families in similar positions to our own, researching on the web, and talking with the cleft palate team at our local children's hospital, we learned the following:
  • These kids are survivors. Our daughter would not have lived through her challenging early childhood without a strong will to survive (and believe us, she is strong willed!). Orphans with clefts have learned to successfully navigate their environments without a lot of special treatment from the world around them.
  • Cleft kiddos have learned to make feeding work for them despite physical challenges. You are not going to break them and they're not going to starve when you get home just because you don't know the first thing about cleft palates. They have mastered their own feeding techniques, which often include shaking their heads to move food around their mouths, because they can't use their palates for leverage
  • Don't be too worried about early childhood delays. Because of a far harder-than-average start in life, it is normal for cleft orphans to be very small and significantly speech delayed. "Normal" delays from institutional care can be compounded by the cleft palate. Our daughter was a mere 14 pounds at 18 months of age and had only one discernible word when we met her ("kukla", which means doll in Russian). In the past months her vocabulary has simply exploded and her words become increasingly more discernible as she learns to use her "new" mouth and works with her speech therapist.
  • You probably just have to accept that you'll never know what caused the cleft. Maybe you'll get some family history that can help you understand what happened, maybe genetic counseling will help you diagnose the root cause, but most likely it will be a part of your child's biological and gestational history that you'll never really have the answers you want. Many biological parents of cleft kids walk this path as well.
If you know about your child's cleft before adoption, you have the opportunity to prepare in many ways:
  • Research your medical insurance and get your insurance ducks in a row before traveling
  • Choose a hospital and surgeon. After examining your child they will finalize the treatment path, but choosing a surgeon before travel will eliminate one more to do item when you return, exhausted and overwhelmed, from your adoption travels
  • Learn baby signs. Depending on your child's age, we definitely recommend learning and using sign language with your child. Sasha had physical impediments to speech, but she latched on to sign language within our first few weeks together and still often uses signs to communicate. Using sign language with Sasha was a godsend.
  • Talk with cleft adoptive parents. They will encourage you, remind you that you are up to this challenge, and share their own tips and tricks that were helpful in their first months home with their child. You can find other cleft adoptive parents through Yahoo and Google groups and your domestic and international agencies.
  • Be real with yourself and have extra grace for your spouse. Try to mentally adjust to the idea that you will probably have more than "average" (whatever that means) difficulty in your first few months home with your child. The fatigue and simple overwhelming nature of bringing a child into your home will be compounded by doctor's visits, surgery, speech therapy, and lots of chocolate running out of your child's nose before the cleft is repaired (this is adorable, by the way). It's hard. And it's worth it.
Welcoming Sasha into our family had been one of the most incredible and rewarding experiences of our lives. If you have the opportunity to adopt a cleft child, we definitely recommend that you evaluate and seriously consider your ability to care for this little one's medical, physical, emotional, and spiritual needs. And if this is the right path for your family, then go for it! Your child will teach you how to care for her, your doctors will guide you through surgery and therapy, and each member of your family will be richer and deeper for the experience.

Thursday, November 5, 2009

What is Deletion 22?

"VCFS -- also known as 22q11.2 deletion syndrome, Shprintzen Syndrome, DiGeorge Sequence and, regrettably, Catch 22 -- is caused by the deletion of a small segment of the long arm of chromosome 22 (specified as 22q11.2 deletion), and is one of the most common genetic disorders in humans. Velo-Cardio-Facial syndrome is typically characterized by cleft palate, heart abnormalities, learning disabilities, and over 180 other clinical findings."

There is a lot of great information as well as a support group that you can join here, and another great explanation here.

More to come...

Wednesday, November 4, 2009

How do I keep track of all those medications?

This is the question I had after my son's second surgery. In addition to his lip and nose repair, he had tubes put in his ears, so he had pain medications, antibiotics, ointments, ear drops, saline drops, and I don't even remember what else. I'm couldn't keep track of all of that on a normal day, let alone the day after coming home from the hospital. Thankfully, my mother is more organized than I and made me this handy-dandy spreadsheet to keep track of everything.

If you're like me and your creations on Excel aren't so pretty, you can download the file from the Kids With Clefts Utah group page on Yahoo! under the documents tab. It's saved as "Ethan's Med Log."

Goal: A No-No Bank

Several parents in the group are working on coordinating to create a bank of alternative arm restraints that parents could borrow after surgeries. Hopefully some will be ready to go soon, but for those parents currently struggling with restraints - hang in there! Once we have it organized I'll post more information about borrowing from and contributing to the bank here. Thanks to Teya for lending out her Baby Hands Down and inspiring the project!

Homemade Arm Restraints

Here is a type of homemade arm restraint that may be easier to keep on your baby.




The strap around the back helps to keep them on, and since they are made of fabric, they are soft and possibly less irritating than the hospital-issued Snuggle Wraps. You can see the pattern for these restraints here if you'd like to try to make them yourself.

A Beautiful Child

Virginia Smiles, an organization for families of children with clefts in Virginia, has this wonderful video that I would definitely recommend to new/expecting parents. You can view it here. It is mostly interviews with parents who share their thoughts and experiences, and is really touching. Thank you to Anna for sharing this!


Before & After: Jimmy

Three weeks old

A few hours post-op

About 1 year post-op

4 years old

Jimmy has a unilateral cleft lip and palate. His surgeon is Dr. Warnock. You can see more of Jimmy and his family at their blog, here.

Tuesday, November 3, 2009

Before & After: Johnny


Big Smile

After lip repair


Johnny has a unilateral cleft lip and cleft palate. His surgeon is Dr. Morales.

Before & After: Jimmy

Brand New!

Cute Wide Smile

Just after lip repair

A few weeks post op

2 years later

Jimmy has a unilateral cleft lip and cleft palate. His surgeon is Dr. Morales.

Baby Hands Down

These arm restraints aren't in production anymore, but if you can find one already in existence a lot of parents like them better than the snuggle wraps provided by PCMC because they allow for more arm movement while still keeping the baby's hands away from their face. Below are lots of detailed pictures of how the restraint works and how it's put together. Thank you to Teya for providing this! Here is the information about the restraint from Teya:

"The first couple of photos are of just the restraints itself; then I have some photos of my son and how it is put on him, then there are some up close photos of the stitching and how they stitched the straps together. My son is 6 months old and weighs about 15 pounds. The strap around his waist measures 19" long, the two straps that go between his legs are 14" long (these could have been an inch or so longer), the wrist part measures 3" long from the bottom of the loop to where it attaches on the cuff, and the cuff measures 5" long and 1" wide. All of the pelvis straps are 1" wide."

Monday, November 2, 2009

Counting Down to Surgery

This is an excerpt from my personal blog from before Ethan's second surgery.

We are down to 2 days before Ethan's lip and nose repair, and I still don't think it has hit me yet. I don't know what exactly is supposed to be hitting me, but it seems like something should. I am always a little hesitant to talk a lot about how I'm feeling with all this (particularly on a blog), but it has helped me to hear other people's experiences through the cleft palate group on Yahoo! Groups here in Utah, so I'll share at least a little.

I think that I went through a lot of emotions between the time we found out that Ethan had a cleft and the time he was born, but since then I have really felt like things have been pretty normal overall. But I think that this surgery will be a bit harder, because I am slowly realizing that pretty soon I won't be seeing the same little face anymore.

I think that if Ethan were really sick and suffering already it would seem natural to have him go into surgery because it would only improve things. It's a little tougher taking my little guy in when he is so happy and doing so well; I almost feel like I'm inflicting it on him, even though I know it isn't really an option not to do it, and he really will be grateful his whole life that I did it. And compared with so many other conditions that exist, Ethan's is relatively mild, and we feel really grateful for that, too.

So I am bracing myself a little bit for whatever it is that I'm sure will hit me when we take him in on Thursday, taking a little extra time to be grateful and enjoy that wide little smile while we have it, and looking forward to all of this being overwith!

Milk Money

I was reading some random site online like I like to do, and saw several people mention that they spend about $120 a month on baby formula. So I proudly announced to my husband that by pumping I was saving us $120 a month. Being the numbers man that he is, he of course had to spoil it by figuring out how much per hour I was "making" by pumping. Six times a day, times about half an hour each time for the whole ordeal, times 30 days a month... Turns out I am "making" $1.33 per hour. Awesome.

How do I deal with the emotions of my child's surgery?

One mom wrote the following advice:

"I think you're right that one of the hardest parts of this whole process is to not allow your worry or grief or anxiousness to affect your child. I thought I handled it really well... except for the desperate sobbing :)

"I think it's important for you to take plenty of breaks while in the hospital and to eat and sleep when you can. You'll be far more able to take care of your child if you're able to take decent care of yourself as well.

"Our experience at Primary Children's was great - the nurses really worked with us to keep our daughter as comfortable as possible. Just know, and try to prepare your heart, that those first few days are really hard and it will get a little better every day."

There is also a post that I wrote just before my son's second surery here.

Cleft No More - Sasha's Cleft Repair

This is Jamie Morningstar's experience with her daughter's cleft palate repair at PCMC. They adopted their little girl from Kazakhstan earlier this year. For more of their experiences, you can visit their blog here. Thank you, Jamie, for sharing!

Today will not soon be forgotten in the Morningstar family! It started well and ended well... the middle part wasn't quite so good but hopefully that part will fade from memory quickly.

Sasha's surgery was scheduled for 2:30 pm and she wasn't allowed to eat all day. I thought that would be truly awful, but to be honest it was rather disconcertingly fine. Steve has a theory that since her meals were so regimented at the baby house, she hasn't yet learned to listen to her body when it comes to being hungry and full. I'm not sure if that's true or not, but you would think that a two-year-old would have strong negative opinions about not being fed all day and Sash just took it like a champ. We kept her busy and distracted and she did ask for food a few times, but surprisingly it was never a battle.

We got to Primary Children's Medical Center at 1:15 and went through the intake process just fine. We were told that the doctor was running a little behind (no big surprise there) and had a good time playing in the pre-surgery waiting room. Then we were told that the doctor was running a lot behind and we probably wouldn't get in to surgery until 4. Sigh.

But Sasha was fabulous. She happily blew bubbles, ate bubble solution (she wasn't supposed to eat or drink, but I don't think bubble solution counts), took rides in the little plastic cars, and otherwise occupied herself for the full 2 hour wait! What a kid.

At 4:00 she had a sedative and her craniofacial doc and ENT (Ear Nose Throat doc) chatted with us about the procedures. By that point she was really loopy and was happy to lay down in the wagon and go with the anesthesiologist. It was go time!

Steve and I made ourselves comfortable in the parent's waiting room and just a few minutes later the ENT came out and told us that the ear tubes went in just fine and she has infections in both of her ears (not super-surprising, that's the whole reason she's getting the tubes) but that the normal drops they prescribe after inserting tubes should also take care of the infection. One procedure down, one to go!

The cleft palate repair took another two hours, but it all went just as expected and the plastic surgeon was able to get all of Sasha's mouth parts into their proper place. He remarked again about how wide her cleft was - we just responded that when we Morningstars commit to something, we go all the way!

He was able to get the whole center part of her palate just where it belongs, which is awesome. Right now, it sort of looks like she has a strip of plate down the center of her mouth and she still has gaps on either side, but Dr. Siddiqi said that's normal and those gaps will heal right up in a couple of weeks without additional surgeries.

After meeting with Dr. Siddiqi after he was done with Sasha's surgery, it was time to go get our baby girl from post op. Begin suckiness.

As she was sedated, the swelling in her mouth from the operation started to obstruct her airway, so they gave her meds to wake her up from the anesthesia instead of letting her rouse naturally. Those meds immediately flushed all of the pain meds and sedatives from her system, which meant that she was feeling everything. I walked into post-op past this kid screaming bloody murder thinking, "wow, I'm glad that's not my kid" - you guessed it, that was my kid.

Of course, the choice between a breathing baby in pain and a baby who isn't breathing is an easy one to make! We spent the next two hours with a screaming, hurting, bleeding, restrained, miserable, and angry Sasha trying to calm her down and keep her blood oxygen levels up. It was awful. Really, beyond words, awful.

But we have a great nurse who worked really hard to find the right meds that were safe for Sasha and kept the edge off of her pain and by about 9 pm she had finally calmed down enough to sleep. Her pulse has stopped racing, blood pressure is normal again, her oxygen levels are doing great, and she's finally at peace.

So we're hoping that tomorrow will be a whole new day. She already had a few ounces of apple juice to drink, which is awesome, and we're allowed to feed her mashed potatoes if she wakes up and is hungry. The arm restraints come off tomorrow, which is fantastic because Steve and I were expecting her to have to wear them for weeks. We may be discharged tomorrow or we may need to wait until Friday, we'll just wait and see what tomorrow brings and how quickly she bounces back.

It's so funny - she already sounds different! Even her crying doesn't sound like it used to. Before surgery, I was sort of mourning her cleft. That probably sounds insane, but it's been a big part of the Sasha we know and love and I was sad to see it go. But now that I hear the beginnings of what her little voice is going to sound like (granted, those beginning were mostly screams, making it all slightly less touching) I know that this is right and good.