Q & A
Question: I found out my baby has AMC when she was born. How do I take care of her?
Answer: Your child is like any other child. You may have to feed her by tube for a while, because sometimes babies with AMC have weak sucking muscles. You MUST begin stretching and massage right away—in the hospital if possible. If the doctor wants to wait a while, find someone else who will teach you how to do it. Surgeries and splints can wait, but gentle massage and stretching doesn’t need to unless your child is exceptionally fragile. Your child will need to receive physical therapy for years, as well as occupational therapy and possible speech therapy. Developmental delays are usually caused directly by their physical limitations, not by any problem with their brains. You will still cuddle them, read to them, make funny faces for them, and show them off proudly. I promise.
This is one of many helpful things I have learned from the AMC (Arthrogryposis Multiplex Congenita) support group website (third link down in the links section). I am now a junior member and have already been in contact with other moms with kids like Laelie. Some are better than her and some are worse off, but all the moms seem to have the same things in common. Many felt just like me when I found out about Laelia’s condition even though now they are strong, well adjusted and totally in love with their kids. There is a forum so we can share what worked in the way of surgeries and casts and physical therapy too.
Based on some of the information and emails I have gotten from other moms, we have decided to back off of the hard physical and occupational therapy and go for a more mild, gentle approach. We’re still doing physical therapy everyday, but now we stop if she cries. If she fusses we’ll keep going, but more gently. Then we will request more aggressive splints and casts for the greater improvements. Also I am massaging her every time I breast feed her.
In effect, this is making her more “touchable” and less flinchy. I always want touches to be a good thing. Now we need prayer more than ever that we get regular PT and OT appointments (especially OT) to do the more aggressive therapy. That way the doctor’s office is associated with pain as opposed to our home.
I’m so glad the other moms with AMC kids were able to help us out in this area. We were doing really bad emotionally with doing her PT. It was killing us. It was really bad. It was the worst thing I’ve ever had to do in my life. We couldn’t go on like that. It’s being adjusted for our sanity’s sake as well as Laelia’s sake.
