Please Help Me (long post)

March 29, 2004

Dear all parents of a child with Clubfoot,

This is my first time posting in a chat room ever. But after

desperately searching the web for info on Clubfoot, I found this

support group. Thank God! I need some advice and support from

those who are going through the same thing as I am. Here's my story

and ultimately my question...

In December, my husband and I had our first child! A beautiful baby

boy named Dane. Dane was born with Clubfoot. We were aware that

there might be a problem ever since seeing his feet on an ultrasound

during my pregnancy. However, we had no idea what Clubfoot was and

what the treatment would involve. Since Dane's birth, he has been

receiving the Ponseti Method. He wore plaster casts for two and a

half weeks and since then has been wearing the DBB brace. This has

been a very difficult thing for me to accept. I know he is in no

pain and does not know any better. But the idea that he can not

kick his little bare feet around just makes me want to cry.

Especially now that the weather is changing (we live in Las Vegas)

and it is getting really hot. Of course I realize that this is the

very best thing for Dane and I wouldn't change his treatment for

anything. It's just hard sometimes emotionally for me. He's doing

really well and his doctor says by the time Dane is six months old

in June, he should only have to wear the DBB at bedtime.

Ok here's my question. Last night Dane spent his first night in his

own crib in the nursery. Up until then, he's been sleeping in a

bassinet by the side of my bed. But he is getting too big for the

bassinet, so we decided it was time for him to sleep in his crib.

We have one of those video screen moniters hooked up, so that we can

see and hear him in our room as he sleeps down the hall in his

room. Needless to say, I was up all night watching him to make sure

he was ok. What I noticed really bothered me. Since he has so much

more room in his crib, he was moving around a lot. Lifting his legs

(DBB intact)high in the air, while stretching and turning his whole

body. Since he is at about that age where he should be rolling

over, I was wondering how this is possible with the DBB? A few

times, he nearly rolled over and it scared me. He wouldn't have the

strengh to roll back over again! What's to stop him from laying

face down in his crib and getting stuck there? I am worried to

death about SIDS (no pun intended). Please help me understand. How

did/does your baby learn to roll over and roll back again while

wearing the DBB?

For those who made it all the way thru this message, thank you! I

feel alone here and it would be comforting to know that there are

other parents out there dealing with the same challenges.

Thanks again!

Sonja-Mommy to 3 1/2 month old Dane

March 29, 2004

First, don't worry, you will get over your feelings towards the DBB. Once the

time is reduced, it should not bother you as much. In the mean time, think of

it as you would corrective glasses. If your son had to have corrective glasses,

it would be annoying, and maybe a bit saddening (none of us like to see our

children as anything less than perfect) but the overall effect would not be

great. This is true of the DBB as well. Those first few months of 23/7 wear

are annoying, but once the time is reduced it is just a part of bedtime ... they

just become an extension of the pajamas, nothing more.

As for rolling and SIDS: can your son lift his head up while on his tummy?

Turn it from side to side? If so, then he will not suffocate in his crib

(assuming you do not have large blankets or pillows, etc.). Your fears are the

same that every parent has ... and not just first time parents or parents with a

child in the DBB. I have 3 kids and I worried just as much about SIDS with the

last (my CF baby) as I did with the first. Having said that, you would be

amazed at how the DBB actually makes rolling EASIER for the baby. That bar

gives a huge amount of leverage with a minimal amount of effort. Instead of

having to learn how to make the body and two separate and not always cooperative

legs work together to roll, the baby need only to learn to lift and pivot one

leg with the body ... the DBB will do the rest for them. My son had significant

gross motor delays for quite some time, but the one thing he could do was roll

from back to tummy. He could not roll the other way, nor could he lift his

chest up, but becasue he could hold his head up and turn it, he never got into a

sittuation where he could not breathe. Just go thru the regular precautions -

no stuffed animals, pillows, thick blankets, etc, and your son will be just

fine. It will take you some time to adjust, and if you need to, try moving the

crib into your room for a few weeks so that you are not losing sleep watching

that monitor. None of my children slept in their own rooms until they were 9

months or more.

Oh, and a very great added bonus to a baby with DBB: you will NEVER have to

worry about him getting his leg stuck between the crib slats!! My middle child

got her leg stuck so bad once we almost had to break the slats to get her out,

but with the DBB, my son never once got his leg stuck in there.

Angel