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

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.

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:

www.honeycuffs.com

These may be helpful for your upcoming surgeries!

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.

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."

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!