Ideas for baby with OI (brittle bones)

My "Auntie" adopted a boy with OI. He is now 23 years old and has a passion for (wheelchair) track and field.

I found this info here http://www.preventinjury.org/SNTFaq.asp on the automotive safety program site:

Q: How long should I keep my child with osteogenesis imperfecta rear facing?

A: Because your child’s bones break easily, he should ride rear facing as long as possible. Rear facing helps support your child’s entire body and protects him better from an injury, especially to the spine. Most new convertible car safety seats allow children to ride rear facing up to 30-35 pounds. Move your baby into a rear facing convertible seat when he outgrows his infant-only seat.

Q: What car safety seat should I use when I turn my child with osteogenesis imperfecta around?

A: Use a car safety seat that has a harness until your child outgrows it. Your convertible car safety seat can be used forward facing until your child weighs about 40 pounds and is about 4 years old or until your child’s shoulders are above the top harness slots. A combination car safety seat also will allow your child to remain in a harness up to 40 pounds. Some combination and convertible seats have harnesses that fit children over 40 pounds. A combination seat can be changed to a belt-positioning booster seat when your child is too big for the harness.

Q: My child has osteogenesis imperfecta, can I add extra padding to my child’s car safety seat because her bones are brittle?

A: Don’t add extra padding behind your child's back and bottom. Your child’s car safety seat might not work as well in a crash with extra padding. Look for a car safety seat that already has enough padding to help your child ride comfortably. Some large medical seats have more padding.

Q: What if my child with osteogenesis imperfecta has a cast?

A: If your child has a cast because the bones in her legs or spine are broken, she will need a car seat that has enough room to fit the cast. Your child might be able to use her own car seat but make sure to try it before you leave the hospital. If the cast prevents your child from sitting, you may need a special car bed or child restraint. Ask your child’s nurse if there is a special needs car seat program in your area that can help find the right car seat or car bed for your child.

so your intuition appears to be medically supported.

Woah. I found somewhere that would ship it, but it would be about $450 for an infant seat, base, and shipping. Maybe I'll see what else I can find here.

There are some very nice much-cheaper 3 points out there. And as someone said, AD ships here regularly-- I bet he'd give you a better shipping rate and I bet he'd be willing to help you out and get you whatever you need.

jubgulia said:

I can't even find a site that will ship one to the US.

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((HUGS)) to the OP. www.carseat.se is adventuredad's website. He sells Swedish and European carseats, and he does ship to the US. I would email him - he is BEYOND helpful and I am certain he will be able to help you find the best carseat for your needs. Good luck.

FWIW, the Coccoro is sold in Japan without a chest clip.

Just saying.

LISmama810 said:

FWIW, the Coccoro is sold in Japan without a chest clip.

Just saying.

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Yes! I remember elite car seats had it as their initial picture of the coccoro. I have been hunting the Combi sites looking for what country it is from.

I found a link with a picture.

http://images.google.com/imgres?img...&sa=N&start=18&um=1&ei=DGdoS7aoHomD8Qb5-cT1CA

Ummmm..... Chest clip or not, the straps still go over the babys shoulders (meaning their arms still go in the straps) and buckle at the belly/crotch.

The only type 3 point I can think of that wouldn't involve arms physically going through would be like the older domestic bucket seats had- where the strap is V shaped and secures at shoulders and crotch. Chances are those are all expired by now. Or is that what you meant by importing a foreign seat?

jubgulia said:

He probably has multiple rib and skull fractures.

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Oh my gosh :crying::crying::crying:

Let me repeat, do what you have to do. If you have to take the chest clip off because he has broken ribs, do it. If you have to import one of the big UK car beds, do it. You are dealing with a huge issue and it is just getting more complex, seeing as he might be casted immediately.

Where are you located? Maybe I can help get you connected with someone.

mommy-medic said:

Ummmm..... Chest clip or not, the straps still go over the babys shoulders (meaning their arms still go in the straps) and buckle at the belly/crotch.

The only type 3 point I can think of that wouldn't involve arms physically going through would be like the older domestic bucket seats had- where the strap is V shaped and secures at shoulders and crotch. Chances are those are all expired by now. Or is that what you meant by importing a foreign seat?

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The European 3 point infant rear-facing only seats buckle over the top of the shoulders individually. They have a puzzle buckle, and a front adjuster.

My friends dd was born with OI and is rather severe! They used a keyfit infant seat and to get the babies arms in they loosened the straps all the way then tightened them back down. They made the parental decision to remove the chest clip from the seat (after they heard a loud cracking noise and found out she broke her ribs just by stopping suddenly). You have to be really careful not to bump the infant seat against say your hip or something while your walking though but it is much easier and safer to not touch them so much by getting them in and out of the seat all the time especially when they are younger. Their dd fit fine in the keyfit with no chest clip. They did have their pediatrician write a prescription for the child to have the chest clip removed after they were pulled over once and questioned about it. The sheriff suggested they do this and keep it in the car just in case they are pulled over again and their doctor saw no problem with doing it.

Anyways, their dd just outgrew the keyfit and is now in a truefit. Seats with too much SIP are too difficult to get the straps on and off her especially since it's a rf seat and getting to the harness adjusters is difficult. They did try the EFTA, but found that without the chest clip the straps just wouldn't stay put. They tried the myride also since it gives more leg room, but again that deep sides made getting her in too dangerous. I don't think the coccoro is going to be a great pick just because it does have those deeper sides so it's going to be difficult to get the arms in without loosening the straps all the way first which isn't exactly easy on a rear facing seat that is already installed.

Also their dd crosses her legs naturally in the car so I don't see rear facing an issue until she gets older. They did put some memory foam around the sides of the crotch buckle though because it was more comfortable for her. Otherwise she seems fine in this seat even with her crazy long legs! This has the worlds shortest torso combined with the longest legs I've ever seen on a child that size! She needs a 3T pant in length (not around her waste), but can still wear a size 9-12m shirt!

Thanks for the tips everyone! We did some more searching and talked to adventuredad. Even with a very nice offer from him, ordering something from Sweden was going to be way out of our budget. However, more browsing led me to a German site that had a good deal on a set (most bases are sold separately) and cheaper shipping than I had seen anywhere else. So we have a Maxi Cosi Cabrio w/ Easy Fix base on its way to us! Now we are just praying that DS3 will get to use it.

I sent you a PM

My cousin has OI and I am very familiar with it.

If they are unsure of the severity, or if the doctors think it will be type 1, 4, or 5, then I think you should just plan to use the Coccoro unless it turns out that you need something special. With a milder form of OI, you probably will not need a special seat. The Coccoro should work well in the beginning and then you can re-assess when baby needs more leg room.

If your baby has type 2 or 3--very severe form of OI, then you may need a different kind of seat, but you won't really know until the baby is born. It's possible the baby could be born with a break or have a break in the hospital, so you may need a special seat for that. However, it is possible that the Coccoro still may work well.