Donate your arm restraints!

I got this email from another parent this morning:

Hey, fellow cleft parents!

A wonderful organization that does tons of work in Chinese orphanages is gearing up for an April cleft palate surgery trip and is looking for left over No Nos. If you have a leftover pair or three, here's a great cause to donate them to - I'm going to send ours off today!

Here's their contact info and post from Facebook:
Got No Nos? Plans are underway for our next cleft surgery trip to China - and we will need 50 pairs for the kids we heal. If you have a pair you could donate, please send them to

LWB,
306 S Bryant, Suite C 145
Edmond OK 73034

Apologies...

I just realized that there were several comments sitting in my moderation box that I hadn't seen! I thought I had set the blog so that it would email me when there were comments, but clearly I didn't do it right... My apologies to those of you whose comments were not posted until today! I turned off the comment moderation and I will just keep an eye on them from now on =)

-Meg

Before and After: Joe

 Between his first and second surgeries.

 Lip taped and ready for surgery #2.

5 months old, just after surgery.

4 days after surgery, feeling great.

7 months old, very happy!

Joe Marcus Albert has a unilateral cleft lip and palate, and has had two surgeries so far with Dr. Morales.

Beautiful Baby

Melissa Papaj recently emailed me and was willing to share the newborn session that she did for her cousin. Isn't this little one darling?! I think it is so special to capture these little ones the way they came to us before surgery, and I'm hoping my son gains a sense of how much we have always treasured him from the newborn pictures we did. My grandparents only had maybe two photos of my aunt before her cleft repair, and it would have been so special for her grandbaby and my son to see more pictures. But they lived in a different time and different circumstances...

If you'd like to see more of this lovely session, take a look at Melissa's blog here:  http://melissapapajphotography.blogspot.com/2011/04/baby-devens-newborn-session-utah.html.

Help! We have tried everything and can't get our baby to eat!

This seems to come up pretty frequently, since babies with clefts have a harder time feeding from the bottle and are more prone to gas and reflux. Here are some tips from parents:

"Have you worked with an occupational therapist or physical therapist? Our occupational therapist was a lifesaver when it came to feeding and issues with the ng tube." 

"Our little guy also had reflux. To help, we had him sleep in a bouncer. He slept in that for the first 6 months of his life. It helped with the reflux. Also, I discovered that Mylicon did not work for his gas, but that gripe water worked great! The brand we use is Little Tummies. We still use it when he has surgery because the anesthesia causes such bad gas. I gave him the max dose after his last surgery and he passed gas all night long and felt much better. We also used Good Start. It was the most gentle on him."

"We had the same feeding issues. We tried different nipples in the NICU and the only one we had any luck with was a regular Avent nipple that we cut a slit into because of the weak suck. This worked enough to be able to stop the NG and come home on a formula called Pregestimil as he was not tolerating breastmilk. He was on reflux medications which never seemed to do much but thickening the formula with rice cereal worked well since we were already using a cut nipple. It made it a sludge like consistency.  At 3 months he had ear tubes put in. Did not help the fussiness. At four months he was taking enough formula but not gaining weight. Because of the poor wt. and extreme fussiness we tried Neocate from home health and that did the trick as he gained a ton of weight and was much less fussy. As he got older his GI issues became more extensive and by age 1 he had a G-tube and stomach surgeries that I won't go into details on. 

"I would keep working on volume and see if the fussiness is related. Therapists may have some other ideas but it sounds like you have already gone that route. A GI doctor may be able to come up with more ideas if its reflux. Let me know if you have any other questions. I would try to get the feeding issues fixed a bit before going into surgery since nutrition directly afftects healing."

 

"Our boy (bclp) had really bad acid reflux when he was a baby.  Our pediatrician recommended Similac Alimentum and it was amazing.  It immediately helped his acid reflux and the throwing up became almost nonexistent (although we still employed other measures like raising one end of his crib at night, propping him up after feeding, etc.).  The only downfall to the formula was that it was really expensive.  It cost $25 per can and although the scoop was smaller than with other formulas it still was really pricey.  So knowing that I don't know if it's an option or not, but I thought I'd just put it out there.  We were really lucky that at the time we needed it our boy was a foster baby and WIC paid for it.  Good luck.  It sounds like a really trying time for you all."

 

"Our daughter (no cleft or anything) had really bad reflux and gassiness and we put her on Enfamil gentlease and it made a huge difference. I couldn't lay my daughtet down flat on her back after she ate for a good half an hour at least. We currently have my son on Enfamil Nutramigen and he is a totally different baby since we put him on it. Nutramigen is the Enfamil version of Alimentum. It is totally broken down and hypoallergenic. Gentlease is partially broken down." 

 

"If you are still have feeding issues, it would be wise to try and get a referral to the FUN clinic at Primarys. It is a group of people who work with your child to solve the problem. My son had feeding issues for a year and half, and it was not until we went to the FUN clinic that we finally figured out what was going on. We got the referral from our ENT and also our pediatrician. It takes a while to get an appointment, so I had them put me on the waiting list, and I got an appointment for the next day!" 

How can I help my baby adapt to solids?

It seems pretty common for babies with clefts to be somewhat averse to solid foods. Here are some suggestions from parents:

"[My son] had a really hard time with solids for a while. Does your little one have a palate prosthesis yet? That made things a bit easier for [him], even though he still gagged and choked a bit. When his soft palate was repaired all that stopped and he could eat just fine. But if he's not ready, there's no reason to push it. There's no schedule that says your baby has to be on solids by a certain age. And with a bottle like the pigeon, where he'll have to work his mouth and tongue muscles differently to drink, you may see improvement in his eating ability.
Good luck!"

"With feeding my one twin... loved baby food the other... hated baby food but loved what we were eating. We would mash or food process it up or very tiny pieces lot and lots of sweet potatoes and baked potatoes. And now she eats better than her sister.  I know there are certain things you have to buy in baby food form because it is safer I can't remember what they are. We would mix them in with their lunch bottles I would make a sluah and had cut the nipple bigger and no vent (white thing) that helped [my baby that didn't like food] a lot but now like I said she eats way better than her sister especially when she feeds it to herself."

"We didn't give [our baby] cereal until after he had been eating fruits and veggies for a while. Maybe try doing it this way. This way he'll get used to eating mushy food like fruit, and since it tastes really good it may be more enticing. The cereal just seemed to give him really bad gas."

"my daughter (no cleft) refused to eat any and all baby foods. She wouldn't even eat applesauce. We kept trying cereals, fruit and veggie puree and nothing. Then one weekend, when she was about 7 months old, she got a taste of mashed potatoes and also some macaroni and cheese, and she was an immediate fan. By the end of the next week she was eating chicken and anything else we could give her that wasn't super hard (she had NO teeth at the time!). She loved food, but hated baby food! After that she would eat regular oatmeal, cream of wheat, yogurt, pasta, cubed and cooked carrots, bread, and anything else that wasn't really crunchy. Your boy may just not like the texture of baby food."

"With solids, my boys didn't do well with any of the fruit ones or things with vitamin c/absorbic acid.  I think it stung their nasal passage.  We stuck with veggies or mashed up fruit without anything added to it.  It took lots of practice, but they eventually were able to down everything.  I did find though that once they sneezed, that was the signal feeding time was over (or else it would turn into a struggle).

"Another thing that helped with feeding time, is if I grabbed an extra spoon and let my son play with it while I held the other spoon and fed him.  I don't know if it distracted him or what, but it seemed to make things easier."

 

Is it normal for my baby to burp SO much?

Here are some answers from the group:

"We had to spend SO much time burping our boys.  I literally became a master burper.  After so many hours, I gained a sixth sense now of sensing when my child has a burp Haha!  Even to this day, I can sense when my baby daughter (who doesn't have a cleft) has a burp in her.

"Hang in there.  They are so much happier when you get that burp out (and way less spit up!).  Just know I've been there, and it's normal."

"[Your baby] could have reflux, which is common in babies with clefts... I don't think his burping problem hours after he eats is related to his cleft and I would look into acid reflux which can be treated with medication. Babies typically out grow it but until they do it is miserable for them."

"I am a big fan of the pigen nipple with the playtex vent-air bottles (just make sure you don't get the wide nipple ones!). They have worked great for my son. He still only takes 6 oz bottles most of the time, any more than that and he gets too full and just spits up. Anyway, the playtex bottles really seemed to help with the gas.

"Another suggestion, if you are using formula, stir your bottles, don't shake them to mix. They get a lot less air in that way!"
 

Tiny Wide Smiles - Doll Cleft Clinic

I love our entrepreneurial parents! Our very own Kate recently started Tiny Wide Smiles, a cleft clinic for dolls! They modify dolls to have a cleft scar to match your child's scar. I think these could be great to help prepare siblings for the arrival of a baby with a cleft. Here is her link on Facebook: http://www.facebook.com/TinyWideSmiles. I love this idea! If we have another baby with a cleft (and there's a good chance we will), I'm definitely getting one!

FDA releases info about link between Topamax and clefts

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

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

You can read the entire FDA announcement here:

http://www.fda.gov/Drugs/DrugSafety/ucm245085.htm

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

Switching Craniofacial Teams

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

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

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

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

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

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

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

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

Study: Are Arm Restraints Worth It?

Way back when, LeAnn Roling gave me a copy of a presentation she saw at a conference on the use of arm restraints following cleft palate repairs. I'll copy here the content of the slides from the presentation, and I'd love to hear what people think about it.

My personal feelings on restraints are mixed; I felt that Ethan didn't need them a lot of the time, but then heard a couple of horror stories about children causing severe damage to their recent repairs (particularly external repairs of the lip and nose). I just couldn't risk it when it came to the lip repair, but was a lot more loose with the arm restraint use when it came to the soft palate repair.

Anyhow, here is the study:

A Comparison of Palatal Morbidity With and Without Arm Restraints Following Cleft Palate Repair
DeAnn Wilson, BSN, RN
St. John's Mercy Medical Center
St. Louis, Missouri

Literature Review

Rate of Cleft Palate Fistula (CPF) increses:

• With children older than 18 months of age at time of repair
• A cleft that is more extensive (bilateral or unilateral cleft lip and palate)
• With a surgeon who has notably less experience

Type of repair had fewer implications and gender had none.
(Cohen, et al., 1991; Muzaffar, 2001; Rohrich, et al., 1996; Schultz, 1986; Wilhelmi, et al., 2001)

Only 1 study addressed the merits of using arm splints.
This Randomized Control Trial determined there was no difference in CPF rate when arm splints were not used:
28% CPF with arm splints
20% CPF without arm splints

None of the CPF were symptomatic or required treatment
(Jiginni, et al., 1993)

Problem and Purpose
Problem:

• Recovery from a Cleft Palate Repair (CPR) is stressful
• Arm splints:
• Frustrate infants and toddlers who do not like to be restrained
• Hinder parents' ability to hold and comfort their child
• Cause sore spots in the axilla, arm stifness
• Interfere with sleep by inhibiting self repositioning without waking

Purpose: To determine if the rate of CPF was higher without the use of arm splints as compared to those children that used arm splints following a CPR.

Methods

•  A single Craniofacial Surgeon's cleft palate repairs (CPR) over a 5+ year period:
• 2.5 years with arm splints (n=22)
• 3 years without arm splints (n=43)
• Retrospective chart review
• All patients underwent a standardized two-flap CPR with "radical" intravelar veloplasty

Extent of Cleft Palate (CP) and Age at Time of Repair

• With arm splints:
• Complete Cleft Palate:     n=7
• Incomplete Cleft Palate:   n=15
• Age Range: 8-38 months; average = 15 months
• Without arm splints:
• Complete Cleft Palate:     n=24
• Incomplete Cleft Palate:   n=21
• Age Range: 6-32 months; average = 13 months
• All children > 19 months: recently adopted, n=11; other illness, n=3

Results
With arm splints (n=22):

• 1 slit fistula - incomplete CP, 13 months (age at repair)
• 4.5% CPF rate

Without arm splints (n=45):

• 2 slit fistulae
• 1 complete CP (wide); 10 months; antibiotics for prolonged fever and sinus infection
• 1 complete CP (wide); 12 months; IV antibiotics for tracheitis
• 1 partial dehiscence - complete CP, 28 months, developed strep throat 3 days after surgery
• 1 complete dehiscence - incomplete CP, 13 months, screamed for 14 hours day of surgery
• 8.8% CPF rate

Discussion

• For each child that developed a fistula/dehiscence, the parent was asked if they observed the child putting fingers or toys in their mouth
• Each of these parents reported their child did not put anything in their mouths
• The child that developed tracheitis 2 days after surgery was also fed solely via G-Button.
• Most parents reported their child did not put anything in their mouths after surgery
• In the immediate post-op period, those children that used their fingers or pacifiers for comfort would try, but most quickly took them out of their mouths
• Those few children that did continue to use their fingers or pacifiers for comfort woudl adjust the position to their cheek pocket, or simply held their pacifier next to their cheek
• Very few children used bottles after surgery, even though we allowed them

Conclusion
Discontinuation of the use of post-palatoplasty arm splints does not significantly compromise palatal integrity.

Emergency Treatment Plan for Kids with Special Needs

Here is a great article for preparing for emergency situations for kids with special needs:

http://knol.google.com/k/emergency-treatment-plans-for-kids-with-special-or-chronic-health-issues#

Sleep Apnea Support Group

There is a Wasatch group, and you can find their information here:


http://www.sleepapnea.org/cgi-bin/databasenew.pl?UT&&State

You can also link from that page to find groups in other states.