United Brachial Plexus Network, Inc.

Hi all, been away for awhile...came back lurking somewhat and now have some questions about the Mod Quad.

My daughter is 21 months, LOBI...or so I thought. We had been doing weekly PT, OT and swimming and thus far have avoided surgery. We started using Leuko tape to help her winging scapula and saw some success. I had sent a tape to TCH of her when she was around 19 months or so and spoke with Lisa Davis about her thoughts just last week. I was fully expecting her to say she looks good..continue what you are doing, surgery is not necessary. Most people can't tell at this point that she has an injury unless a point it out (which I don't really like to do).

To my incredible suprise she said it looked like my daughter my have had a bilateral injury and that she would most likely need the mod quad and that I should schedule an evaluation and surgery at TCH.

So for months I've just kind of glossed over peoples accounts of their children's mod quad surgeries thinking that this is more information than I can handle at the moment. Now of course I need all the information I can get.

Some specific questions...
When is the best time for this surgery?
How long were you at TCH?
What is the recovery like?
What is the pain like?
What is the waiting list like?
Are you happy to did the Mod Quad?
What kind of improvements do you see with this surgery?
Was this the first surgery for your child?

To complicate things, I'm expecting #2 in July (planned c-section!!!!), right when my daughter turns 2 years and I want to better understand the timing of this procedure so that I can me sensitive to the huge disruptions in my child's life that are about to take place (new sister and possible surgery), as well as making sure that I have enough energy when #2 comes along.

Any thoughts, answers are much appreciated.

Lisa Duncan

Hi Lisa.... I'll try my best at your questions:

When is the best time for this surgery?
This is decided by the specialists. I know that at TCH they like to do these early on now so that they can try and give the joint as much motion as possible so that it has a better chance of becoming a more normalized joint earlier on. They started doing them earlier and earlier as they noticed when deformities began showing up.

How long were you at TCH?
We spent two nights at TCH and then went home immediately after discharge. Worked out great that way - Maia needed to be home in her own bed and she felt more comfortable in her own element.

What is the recovery like?
Recovery is different for each child and is dependent on so much - how much stress is in the household - how the parents take to working with the splint- how committed you are. It's definitely a stressful time period....I've heard from many that the kids don't sleep good after surgery.. But I also here and have witnessed with Maia how resilient the kids are - they play as though they are not splinted - playground and all - run and jump and tumble. Maia did her normal stuff - she just didn't sleep well at night.(so it exhausted ME - not her!)

What is the pain like?
Again - each child is different. Many children have pain and just as many don't. I wonder if the children that do have pain have more sensation working than the children that don't but I don't know what the answer is on this one. Maia had a lot of pain in the hospital or frustration with the splint but once she got home she was better and was just on tylenol. Some children have high tolerance some have low. If your child has a lot of pain while in the hospital, you can see someone from "pain service" and they can help with their resources (i.e. PCA pump, etc).

What is the waiting list like?
I think that most people set up a surgery for 1-3 onths in advance. But I guess it all depends on what their calendar looks like.

Are you happy to did the Mod Quad?
ABSOLUTELY but with us I don't think there was a choice - Maia had very severe contractures and because of how she was compensating so much, much more severe issues like scoliosis, etc. would most like started happening very early on. We did many alternatives - chiropractic, daily massage X 2 (I'm a massage therapist), Reiki, homeopathy, acupuncture and many therapy sessions a week and nothing was able to stop the progression of her contractures.

What kind of improvements do you see with this surgery? Full range of motion-shoulder flexion at 180 degrees. WOW! A video of this is on Maia's website http://www.injurednewborn.com/maia/homepage2.html

Was this the first surgery for your child?
Maia had primary at age 7 months and mod quad at age 19 months.

I have a whole section on mod quad at the site - including pictures of the surgery itself.

Keep on asking questions!!
-francine

Francine,

thank you, thank you, thank you for your responses and for your website. I'll be visiting it frequently...there is so much information there! Maia is a beautiful girl, lucky to have such a dedicated mother.

Lisa