Club Foot

Hello all!  I posted back in December about our baby's bilateral clubfoot diagnosis via ultrasound.  That turned out to be the least of our worries...she was born 15 days later at just under 24 weeks gestation.  As you can imagine, it has been an up and down battle in the NICU for the last 8 weeks. 

Now that she is relatively stable and the integrity of her skin has improved, we've begun thinking about treating her feet in the coming months.  We have been doing some stretches with her feet and ankles for the past couple of weeks, every 3 hours for 5-10 minutes or as long as she can tolerate.  The doctors do not want to cast until closer to discharge.

I realize that our situation is different than most, but I'm hoping someone out there may have experience something similar or have some advice to offer.

Do any of you have little ones who were also in the NICU?  What treatments did your child receive and when?

Are Halle's feet going to be more difficult to correct since she won't have treatment until about 4 months of age?

Thanks!

Macey

Macey,

My son was born with bilateral clubfoot and was born at 33 weeks. I know that is nothing comared to how early your child was, but I wanted to share our story with you.

We waited until our son was out of the NICU before we started his treatment. He was 1 month old before he started his castings, and that seems to be working out just fine.

I think the most important thing for you to find out before you decide what to do, however, is to find out what methodology will be used to treat the clubfoot. Our son is being treated using the Ponseti method, and I would STRONGLY suggest that you look into this. Here is a link to Dr. Ponseti's website: http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html

This is a non-surgical method that has far less side-effects later in life. Your little one is going through enough right now and doesn't need any lasting effects due to her clubfoot.

If your hospital can treat your baby using the Ponseti method, then I wouldn't see any reason not to start as sson as possible. However, if they do not use that method, I would look around for a doctor in your area that does. We waited to start our son's treatment until he was out of the NICU since the doctors at that hospital didn't treat using Ponseti.

If you have other questions, there are links on the Ponseti site to contact them directly. I sent an e-mail to the address on the site and heard back within a few days. Also, there is an area on the site where you can locate doctors that are approved by Ponseti to use his treatment and are more likely to do things correctly.

Finally, I'm also a member on another message board that may be of interest to you. It is http://health.groups.yahoo.com/group/nosurgery4clubfoot/

Good luck and I'm glad to hear your little girl is becoming more stable.

My DS was born at 34 weeks. We started casting with the Ponseti method at 2 days of age in the NICU. The nurses had some problems when they would weight him because they never knew how much he really weighed. A week after the first cast the dr came and changed the cast. Joshua was discharged after 12 days. We immediately had an appointment for another cast change at Shriner's hospital in Springfield MA. They are wonderful and I can't say enough good things about them. And it is local and free.

Joshua is now 3 and a half. We are dealing with a possible relaspe which might lead to castings and another surgery. I would suggest that the quicker you can start treatment the better.

HTH
Andrea and Joshua (09/22/01, ponseti method, right club foot)