Ideas for baby with OI (brittle bones)

jubgulia

Active member
DS3 is due at the end of March and has been diagnosed with Osteogenesis Imperfecta. I have been doing some research on an OI parents message board and they have been very helpful about preparations with things like clothes, but the carseat info seems pretty off to me. Mainly what I have gathered is that it is important that the carseat is very padded and easy to get the harness on and off (can't pull arms through and such).

What they have done and are suggesting to people is to cut egg crate foam or memory foam stuff and put it in an infant seat under the cover and on the sides. Most suggest switching to a Britax convertible when desired and to turn FF when their legs are compromised (legs against the back seat is an actual concern for them because some can and have broken in the car seat and not even always in a crash) or when they outgrow it by weight (OI kids can be very small so for some this is beyond 4 or even 6 years old in a RA or MA even). They have to deal with casts/splints a lot and some even tell how they had to move their kids at 16 months to a booster with a pillow on it in a reclined seat held on by bungee cords. :eek: Also, it seems that a child's feelings of wanting to be normal at a certain age are taken into account about when to change carseat usage.

Now, I know that if my child's legs can break when RF from stepping on the brake too hard that it would be all that much easier for his neck to break if he is FF. I am trying to put this all in perspective and figure out what to expect in this area. I guess ideally he would be RF forever, but I'm sure that is completely impractical. A lot of people with OI live relatively normal lives too, so that means school buses and field trips and going out with friends/family eventually. The other thing is that most people do a lot of traveling to hospitals with specialists for treatments or surgeries, so airplane use and alternative transportation is an issue.
 
ADS

jubgulia

Active member
We currently drive a 06 Corolla, but we hope to be able to get something bigger soon (ideally an 8 passenger Sienna :cool:). We have at our disposal a Radian 65 (33 lb RF), Coccoro, SS1 (older with no infant padding or strap covers), SS2, and a booster. I am SO open to suggestions for right now and ideas for the future as well.

I originally planned to use the Coccoro for DS3 from birth, but now I am wondering if it is really going to be important for him to be in an infant seat for a while just for the convenience of being able to take the seat out without moving him. The Coccoro would fit better, has much better padding, and would be so much more supportive than the SS1 though! DS2 was so much more comfortable in it than the SS1. If only the Coccoro had a base:rolleyes:!

I was already planning on downsizing the double stroller to a Phil & Ted's SMART with a Kiddyboard when it comes out. It has a seat (shock absorbing "aerocore") that can be switched out for a bassinet or carseat (Graco only at first, then more later). http://www.philandteds.com/upload/index.php/push/51
 

JerseyGirl'sMama

New member
I would not feel comfortable putting any extra padding in a carseat, but I have no experience with OI. I have only read about it. What about getting an infant seat that has the most padding in it, like the Chicco Keyfit. The newborn insert is so nice and cozy. It has the front adjust harness, so you would easily be able to loosen the harness and re-tighten without having to pull the babies arms through. The chest clip worries me though. I wonder if you need to find a european seat without a chest clip.
 

Maedze

New member
What about importing? A seat that has a foot well might protect those legs. Alternatively, the Radian also has loads of rear facing leg room.
 

mommaon112903

New member
What about getting getting the new [ame="http://www.amazon.com/Combi-Coccoro-Flash-Stroller-Frame/dp/B002VBXY36/ref=sr_1_1?ie=UTF8&s=baby-products&qid=1264537294&sr=8-1"]stroller frame [/ame]for the Coccoro?
 

featherhead

Well-known member
I would get a European infant seat that has a 3 pt harness and no chest clip. That way you won't need to pull arms through straps.
 

jubgulia

Active member
I would not feel comfortable putting any extra padding in a carseat, but I have no experience with OI. I have only read about it. What about getting an infant seat that has the most padding in it, like the Chicco Keyfit. The newborn insert is so nice and cozy. It has the front adjust harness, so you would easily be able to loosen the harness and re-tighten without having to pull the babies arms through. The chest clip worries me though. I wonder if you need to find a european seat without a chest clip.

Would it be bad to use an American seat without the chest clip? The Coccoro could actually be doable if we didn't have to get his arms around the clip every time we took him in and out.


What about importing? A seat that has a foot well might protect those legs. Alternatively, the Radian also has loads of rear facing leg room.

What do you mean by a foot well? Do the Swedish seats have that?

What about getting getting the new stroller frame for the Coccoro?

That could work for travel, but I can't see reinstalling every other day before we can come home from grocery shopping or whatever :p.


Do they make the covers for the SS1, SR35, etc with Gracopedic cushion anymore? The only one I can find that states it is the Sachi Snugride 22. If so, maybe I could just order a new cover with the cushion and infant insert?
 

safeinthecar

Moderator - CPS Technician
My experience with OI is limited, but I do know a little bit. First, plan for the newborn stage and wait for the baby to be born before you make any long term plans. The OI may be quite mild, and that will effect your choices of what to do next. Try to stay as close to best practice as you can, but do what you have to do. If that means removing a chest clip or adding padding, so be it. When you get into SN and vehicle safety, there are no absolutes, it's all shades of gray.

I think the CCO is an excellent choice actually. Think about how much babies in infant seats get bounced about as the parent carries the seat. I would feel like I had much more control over the amount of movement transferring to the baby with my hands on the baby than I would with my hands on the carrier. You can always get an infant seat too, try both, and return the one that doesn't work out.

Long term, you do want to rf as long as possible, because you are right in thinking that the neck is going to be just as much t risk as the legs. Keep in mind though that a lot of factors other people aren't dealing with re going to factor into how long "as long as possible" is, so no guilt. Do the best that you can and that is good enough.

I do understand the point of the parents who turn to avoid breaking legs. Even though legs are easier to fix, for the most fragile of children, quality of life may supersede preserving life. I know this sounds terrible, but when parents are caught between the rock of their child dying a quick painless death due to a broken neck, and the hard place of their child spending their entire short life painfully breaking legs on every car trip, I 100% support their decision no matter what they choose.

I know this is hard. ((((HUGS))))
 

spokaneCPST

CPST Instructor
Here is a link to some information from the Automotive Safety Program/Prevent Injury.org (Riley Hospital) about OI and carseat use. They have a brochure completely dedicated to this topic, which would be beneficial for many of the other parents you have contact with. Basically, your instincts are correct - carbed if the child has difficulty breathing or other health issues, RF as long as possible (which may be different than how long you would with a typical child), do not add padding, harness to an appropriate age, then booster. This is the information page (scroll down to the Q and A on OI, about 3/4 down the page):
http://www.preventinjury.org/SNTFaq.asp
 

Patriot201

Car-Seat.org Ambassador
Have you been given any information regarding the degree of OI? That could actually be very good information about how to prepare. :)

I am not sure I understand the recommendation of a Britax convertible. They have relatively little leg room in comparison to other seats. I am not sure it matters right now, though, since you likely have quite a while before you need to worry about a convertible.

Best of luck! Congrats on the upcoming arrival of your little one! :)
 

ketchupqueen

CPST and ketchup snob
Staff member
I would absolutely import. First I would import an infant bucket with a 3 pt. harness. When that is outgrown, I would import a seat that allows a LOT of RF leg room. When that is outgrown, I would probably go for something very padded and reclined like, maybe the MR? for FF. But something better may be out by then. I'd worry about what comes first, first. :)

Quite frankly I know importing is illegal but I wouldn't care with a child with a medical condition like this. I'd find the best seat in the world for him, and I'd buy that. And I'd keep doing that as he outgrew each seat, whether that's a US or European seat.
 

Jeanum

Admin - CPS Technician Emeritus
Staff member
((Hugs)) to the OP. If I'm remembering correctly from a Car-seat.org hosted online CEU chat with Deborah Stewart from Safe Ride News (the chat transcript archive can be found in the Articles section of the forum), OI/brittle bone was cited as a medically valid reason for petitioning NHTSA to get formal approval to import a higher rear facing weight limit Swedish or EU certified carseat. That was before we had the more recently available U.S. convertibles with higher rear facing capacities as options, but I wanted to mention that there's a medical precedent for formal NHTSA legal approval of importing for a child with OI.
 

Maedze

New member
I don't suppose a Safeguard Go type seat would work or be allowed on a Caravan swivel seat, right?

For a newborn or an older child?


It wouldn't work for a newborn. Newborns need to be reclined at 45 degrees.


If you're discussing an older child, all child restraint manuals require that their seats be installed on forward facing vehicle seats. The Caravan will not allow you to install a seat on a swiveled rear facing captain's chair.

Now, you may find your child is four years old, has outgrown the leg-room capacity of whatever ERF seat you end up getting, and you may choose to use a Caravan swivel seat.

As a PP said, when you're talking about special needs, there are no absolutes. It's all shades of gray.
 

jubgulia

Active member
I think the CCO is an excellent choice actually. Think about how much babies in infant seats get bounced about as the parent carries the seat. I would feel like I had much more control over the amount of movement transferring to the baby with my hands on the baby than I would with my hands on the carrier. You can always get an infant seat too, try both, and return the one that doesn't work out.

I was thinking of the CCO and using a stroller with a bassinet option. Then I would not have to import anything immediately and we could see how it goes. We did not have a good last appointment. He probably has multiple rib and skull fractures.

I would absolutely import. First I would import an infant bucket with a 3 pt. harness. When that is outgrown, I would import a seat that allows a LOT of RF leg room. When that is outgrown, I would probably go for something very padded and reclined like, maybe the MR? for FF. But something better may be out by then. I'd worry about what comes first, first. :)

Quite frankly I know importing is illegal but I wouldn't care with a child with a medical condition like this. I'd find the best seat in the world for him, and I'd buy that. And I'd keep doing that as he outgrew each seat, whether that's a US or European seat.

I tried looking up 3 pt. infant seats and the Maxi Cosi Cabrio looked like a good one. However, it is very expensive (although less expensive than other European 3 pt. options) and I can't even find a site that will ship one to the US. :confused:
 

capeKO71

New member
ditto to the Preventinjury.org - call them - they are excellent and REALLY have great answers from experienced special need techs.
 

ketchupqueen

CPST and ketchup snob
Staff member
As far as importing an infant bucket, I'd probably have it shipped to a friend overseas and have them ship it here. I'm sure there are a few members here who would help you out if you don't know someone personally...
 

amyd

New member
As far as importing an infant bucket, I'd probably have it shipped to a friend overseas and have them ship it here. I'm sure there are a few members here who would help you out if you don't know someone personally...

That or I wonder if AdventureDad could help you out. He ships lots of EU seats to the US.
 

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