NAM Advice

[jstupak]

Our little girl is due in January and we just met with the Cleft team at Pittsburgh's Children's Hospital. Apparently, there is some conflicting views with how best to treat our child. Has anyone used the NAM device? If so, would they recommend the device? It is very hard to make a decision when you get two different opinions from highly respected surgeons.

Thank you for your time.

[Heide]

Hi there, I am unable to give any advice about the NAM,. Our daugther was born with a wide bilateral cleft of lip and palate. For us, we did "taping" and had a retainer like thing that we used to assist with feeding and which also had a turn key to try to bring the cleft together. We took the "retainer" out and cleaned it twice a day, with the taping to last 1-3 days. It was a struggle but I think the taping helped stretch the skin for the lip repair surgery; the surgeon also said it helped the cleft but I can't say I was aware of a measurable difference. Perhaps the doctors that you are considering may be willing to give you references regarding their cleft work to help you with your decision. all the best for your little bundle of joy. Heide

[babyboycoming]

I don't have first hand NAM experiences to show (babyboy has a unilateral lip and his Dr didn't recommend) but when I first learned about his cleft I found an amazing blog by a mom about her little girl's (and her) journey with the NAM device and with her team. It is a great blog and it is still being updated now that her daughter is ~2.5. You can see how great she is doing now (there are even videos of her singing a song).

http://www.cleftstories.com/