Baby with phocomelia, what car seat?

U

Unregistered

Guest
My daughter will have no arms (at all, no bone attached to shoulder) and her legs stopped growing at thre femur (feet are there). No doctors have been helpful on trying to prep for her.

We were going to go with a Chicago Key fit 30, but someone on a board mentioned the possibility of needing a car seat bed? Would anyone know if children without limbs typically need them? Or are those only for children under a regular seat limit or those who fail the car seat test?

Baby looks totally healthy as of now just missing limbs so I'm just wondering what we should buy or if both should be on hand..

Thank you.
 
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ketchupqueen

CPST and ketchup snob
Staff member
Welcome! I'm glad you're preparing ahead of time.

From previous discussions, I gather that for children missing limbs a harness is necessary as long as possible and they may be challenging to get a good fit on. How quickly do you expect to be discharged after birth? One option is to not buy a seat until just before birth and return it if it's inappropriate. (if you need a car bed the hospital will provide it.)

I would definitely choose a seat that fits small babies, especially those with narrow builds, well, as it is more likely to place the straps close together over the torso.
 

Patriot201

Car-Seat.org Ambassador
Welcome!

From my (extraordinarily limited) knowledge, amelias can often be associated with body wall abnormalities, as well. Your daughter's torso seems typical? That's great news!

I agree with ketchup that a seat with straps that are close together is likely the way to go. It will also be critically important that the harness be tightened correctly in order to keep her restrained properly.

Because amelias are so rare, there aren't a lot of resources out there on how to properly restrain children without limbs. If you are able to use a traditional carseat, that would probably be optimal because of accessibility. The Chicco KeyFit is a seat that typically fits tiny babies well, so it might be a good choice for your daughter. Unfortunately, it is difficult to know for sure.

Best wishes.
 

Patriot201

Car-Seat.org Ambassador
Have you seen this mom's FB page? https://www.facebook.com/admirablydiverse#!/admirablydiverse

Her baby, Camden, has very small upper arms, but no legs. While the affected limbs appear to be slightly different than your daughter's, it might be worth contacting her to see how she has restrained her baby and how it has worked. I'm making no promises regarding how well she's been able to restrain him, because I don't know her and have not seen photos of her son in his carseat, but she might have some insight.
 

jordansmom

New member
Have you seen this mom's FB page? https://www.facebook.com/admirablydiverse#!/admirablydiverse

Her baby, Camden, has very small upper arms, but no legs. While the affected limbs appear to be slightly different than your daughter's, it might be worth contacting her to see how she has restrained her baby and how it has worked. I'm making no promises regarding how well she's been able to restrain him, because I don't know her and have not seen photos of her son in his carseat, but she might have some insight.

A quick scroll through her pictures and blogposts show she was able to purchase a Graco travel system...looked like a Snugride 35 classic connect.
 
Have you seen this mom's FB page? https://www.facebook.com/admirablydiverse#!/admirablydiverse Her baby, Camden, has very small upper arms, but no legs. While the affected limbs appear to be slightly different than your daughter's, it might be worth contacting her to see how she has restrained her baby and how it has worked. I'm making no promises regarding how well she's been able to restrain him, because I don't know her and have not seen photos of her son in his carseat, but she might have some insight.
I just read through her page, what a beautiful baby and such a loving mom.

I'd say the SnugRide 30/35 would work well, or the KeyFit, both using rolled receiving blankets as needed.
 

safeinthecar

Moderator - CPS Technician
I would say have everything set up for a Hope car bed ahead of time. There may be minor jaw, palate, or cervical abnormalities that may affect her ability to breath properly when inclined. You may not need it but you won't know until you do a car seat challenge. Having it set up ahead of time will let you just concentrate on your daughter and enjoy her without worrying about how to get her home.
 

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