Convertible seat for low tone stroke survivor

I am looking for convertible seat suggestions for my daughter, 13 months old. She has no head control, but can support her trunk if we put her sitting in our laps and support the back of her head. She had a stroke in utero and has several benign tumors on her spine and brainstem. Two of which are compressing her spinal cord on the c1 &c2 area of her neck.

She absolutely hates the infant seat. She went into cardiac arrest when I was driving alone with her last year while in the seat, and now she freaks out in it to the point where we can't go anywhere alone with her. One us has to sit in the back with her and pull her out when she starts to freak. We have a "no carseat" script from the doc because it is obviously safer for her to breathe in my arms than not breathe in the carseat, but we still would rather have her in a carseat.

I know there are several special needs seats out there, but they all seem to be forward facing, and I want to her rear facing for as long as possible.

Fortunately, cost is not a concern and we are ready and willing to spend whatever on a safe seat for her. We would need something that has a good recline to help her keep her airway open, and something that would be quick and easy to pull her out if in case we need to. Thanks!

You probably don't actually need a special needs seat to accommodate her RF for quite a while longer and have plenty of support.

How big is she? Do you think her aversion is to that car seat specifically, all car seats, all RF seats, etc.?

A lot of the seats that are very supportive also have headwings and/or deep sides... Do you think she would have a problem with that?

She is 21 lbs and 29.5 inches long. She just got a shunt placed a few weeks ago, so she has been doing a little better in the seat. I think she was just uncomfortable because there was a lot if pressure and it physically hurt for her to be in the seat.

Also the doctors did not expect her to survive for this long. They told us after her cardiac arrest episode that she would not live and we should take her home and hold her. So that's what we did. Just held her for the past 10 months, and doing so created a mommy needing monster. So the other part of why she freaks is because I am not holding her.
I think she would do ok with headwinds. I have rolled up blankets next to her head in her infant seat and in her favorite laying around chair at home. She would probably feel more secure than she does now. Thanks

My first thought when I read about a child with poor head control is always the MyRide. It has such a nice natural recline. I know that Shaunam has her Charlie in a Recaro Euro now, and likes it.

I LOVED the myride! I've never used the recaro euro rearfacing so I can't speak to that. I think the graco my size/size4me/etc would work well too, but I haven't been able to try one out. The Britax convertibles were also nice.

Seats I would avoid, at least until her tone improves: Diono radian, Evenflo triumph and momentum, and anything with a very straight back and little padding (scenera, apt, tribute, etc).

The only "special needs" seat that rear faces is the Britax hippo. It's certainly an option, but I wouldn't get one unless insurance pays for it. It's too expensive out of pocket to justify for a child who isn't in a spica cast. A similar seat that is less expensive is the Britax roundabout 55 or the marathon.

If your doc is willing to forgo the car seat, you could definitely get a medical clearance to get an airbag on-off switch put in, so you could turn off the passenger airbag (look into shops that specialize in handicap van conversions, they're the ones most likely to be willing to take on this liability once you get the waiver) so that you could have her rear-facing up front, and able to see you. Just a thought.

The Britax Hippo, as Shauna says, is the only rear-facing SN seat. There's no reason to use it for your daughter as she doesn't have a hip cast; indeed, I was taught in my special needs training to use conventional seats as long as possible, and rear-face as long as possible, for any child with special needs, because that's the safest AND cheapest way to go.

ketchupqueen said:

If your doc is willing to forgo the car seat, you could definitely get a medical clearance to get an airbag on-off switch put in, so you could turn off the passenger airbag (look into shops that specialize in handicap van conversions, they're the ones most likely to be willing to take on this liability once you get the waiver) so that you could have her rear-facing up front, and able to see you. Just a thought.

The Britax Hippo, as Shauna says, is the only rear-facing SN seat. There's no reason to use it for your daughter as she doesn't have a hip cast; indeed, I was taught in my special needs training to use conventional seats as long as possible, and rear-face as long as possible, for any child with special needs, because that's the safest AND cheapest way to go.

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Agreed, 100%. I was just going to mention the airbag switch. If you have an rx for the other, it shouldn't be an issue. The hardest part will likely be finding a shop, but even that's not impossible.

Here's the info you'd need to be able to do that: http://www.safercar.gov/Vehicle+Shoppers/Air+Bags/ON-OFF+Switch+Requests

The recommendation for the Rx for the airbag shut-off is excellent. I think it would be very beneficial for your DD and give you the ability to make running errands with DD less stressful for both you and her. Given her stats, she's not overly tiny nor big, I would suggest the Britax convertibles. The padding and support in the back of the seat is very plush. Britax also has very easy to operate buckles, compared to the "new" Graco buckles that seems to generate many complaints about getting stuck. That would be something to consider as well, since quick and easy removal may be needed.

My son has low tone, but not to the extent of your DD. He was miserable in his infant seat, so as soon as he was big enough (he was a preemie with very slow growth), we went to BuyBuyBaby to find a convertible seat. The two we found that he was the most comfortable and supported in was the Britax Boulevard and the Britax Advocate. The others didn't seem to offer him enough head support, and he just looked super floppy in them. We went with the Advocate, and it has worked really well for us. He no longer complains about being in a car seat, and it gives him plenty of support. He wasn't able to sit up unassisted until he was closer to 14 months old, but this seat has given him lots of support and he doesn't have a head slump like he did in his infant seat. I know a lot of people say they outgrow Britax seats RF quickly, but my little guy is not even 20 pounds at 18 months old and about 29 inches tall, so I am assuming he will be able to use this seat for quite some time.

I would not recommend the Graco seats at this time just because of the buckle issues. I love the My Ride but I worry that you would get one with a buckle problem and not be able to get her out in a hurry if you needed to.

I'd for sure look into the airbag switch and then if you can, go to a BuyBuy Baby or Babies R Us and try her in some seats. Try the Britax seats, Recaro, whatever they have and see what she seems to like.

Thanks for the input. I had it narrowed down to the Britax boulevard and graco myride. We took her to the store to try her out in them.

I really wanted to like the Britax but she just didn't look right in it. We decided on the Graco my size 70. It reclines nicely and she was very comfortable in it. The buckles were a bit difficult, but I think they will be ok once I am used to it.

Thanks again!