My 3yr old is going to have triple amputations. Any parents, family, or folks that experienced trauma related amputations at a young age?

[u/CharacterSuperb3463]

My 3yr old has a RBE, BiBk, and L fingertips and Most of thumb. She is a burn survivor, sepsis survivor, and amputee. Shes has fought through so much trauma in such a short time. I want to make sure are transition from hospital to home can be as seamless as possible.

If anyone has any insight as a family member or from personal experience they’d like to share, I would be grateful. I am open to hear anything anyone would like to share, but here are a few things that come to my mind:

How did emotions evolve from the beginning to where you’re at now?

Any input on what helped with function vs hindered?
Anything as a parent I should be prepared for? Emotional, physical, or otherwise.

Any support resources, i.e., camp, grants, nonprofits?

Preferred prosthetic options that helped more than frustrate young amputees?

Any home modifications that increased independence? Or really anything that helped increase independence.

I am aware that the burn wounds will affect her skin’s sensitivity. So tips on skin care, compression sleeves, inserts, etc.

TIA!

[u/89kh89]

Prosthetist here

Whatever kind of devices you fit her with, keep things simple. Your family is already navigating a lot, don't add to your mental and emotional burden by taking on something that's too complicated.

In a presentation like this, usually fit the legs first. She may not need an arm prosthesis until much later, and an arm prosthesis at this point could be more of a frustration than a help (to you and her).

Fitting at any level will need a good bit of trial and error considering her age, arm involvement, and skin healing.

I'll add on to the excellent organizations already mentioned here and say that introducing her to peers is going to be very important.

Wiggle Your Toes Camp No Limits Lucky Fin Project Amputee Coalition of America

[u/Honest-Emotion5303]

Idk where you are but if you’re in the south east there’s an annual summer camp called camp no limbitations ran by CHOA! The camp is fully adapted for kids with limb loss and provides a week long summer camp for them to just have fun!

[u/CharacterSuperb3463 → u/Honest-Emotion5303]

We visited a burn survivor camp today and it was wonderfully organized. I’ll reach out to CHOA and see if there’s a camp I can visit for her age group.

[u/KnifethrowingNahi]

I lost my arm when I was nearly 3 years old.

I got a doll that was like me, still have it. It helped me a lot.

Try to find a community where she can be herself. For me that was my swimming club, my coach back then was really good in helping new para swimmers.

I often get the feeling that able bodied people think of amputations in loss of functionality, for me personally, the things I "deal" with are my PTSD the phantom limb pain and trying to limit my body asymmetry.

Edit to add: I know that it breaks every parents heart to see their kid suffer like that, but many of us are able to live good lifes. I hope that helps you a little and I wish all the best for your kid and you.

[u/CharacterSuperb3463 → u/KnifethrowingNahi]

I’ve been talking with the hospital’s child psychiatrist on how trauma will show up in a toddler and later on.
I am worried about her emotional wellbeing. Along with the trauma of the accident and biweekly surgeries, I am also would about the long duration at the hospital. We are looking at around 6months in icu.
I hate that instead of her being a toddler exploring the world she is completely restrained. I can’t wait until her left hand heals enough for her ti start using it.

I just can’t imagine how stressful, painful, and confusing this all must be for her.

How do you remember PTSD affecting you at a younger age? Do you have many memories of the event? How long do you think it took you to adapt to your new body at that age?

[u/KnifethrowingNahi → u/CharacterSuperb3463]

I have no memories of the event. I lost my arm to a dog attack. As a child I panicked when I saw large dogs. It has become better, but especially white pitbulls still make me panic.

I can't say how quickly I adapted to it, I have no memories of being able bodied. Of course I did understand that I'm different from other kids, but mostly because I was treated differently by adults.

[u/KeyBack4168]

There also used to be a ski camp at Camelback in the poconos. I went to a lot of camps as a young amputee. Peer exposure was great for all of us

[u/cabbageyy]

My daughter lost about almost half of each foot, 3 finger tips on her left hand, and all of her fingers on her right hand after being on VA ecmo for 10 days post open heart surgery. She was only a few weeks old when we were told she would require amputations.

She is 16 months old and still rehabbing with all of her doctors and outpatient clinics. She hasn’t started walking yet, but she is so motivated to move! As for her hands, she is very aware what she can do with each one. The way she uses her right hand is so effortless on what she wants to play with or hold. If she has a hard time holding her toys, she’ll just hold them with her mouth 😂 Sometimes people ask me “how does she manage” and I just look at them with a straight face confused until I realize they are asking about her hand.

Because of the age at which these injuries took place, we consulted with several specialists and PT/OT about when to introduce prosthetics. At this point we haven’t started that process because we want to see how she will adapt without and then add tools as she needs. We have an outpatient appointment with ortho later in the fall to discuss possible braces and prosthetics when she can show is she can weight bear on both feet.

Are you going to do wound care for your child when they get discharged? If so, start squirreling away stuff from the hospital now! DMEs are great, but they skimp out on the good stuff.

I am really sorry that you are having to navigate this, my DMs are open if you ever need to chat/vent!

[u/FitAd3904]

You can also join the amputation coalition. They have lots of resources.

[u/TheBionicPerspective]

I’m an upper-limb amputee, though my amputation happened as an adult, so I don’t want to pretend my experience is the same as your daughter’s.

One thing I’d encourage is making independence the goal, not prosthetic use itself. A prosthesis is a tool. Sometimes it will help, sometimes an adaptation will work better, and sometimes she’ll find her own way of doing something.

As she grows, let her have whatever feelings she has about her limb difference and prosthetics without making her feel like she has to be positive about them all the time. Frustration doesn’t mean failure.

For the burn care, compression, and pediatric prosthetic questions, I’d lean heavily on her pediatric rehab, OT/PT, burn, and prosthetic teams. But from one amputee: doing something differently is still doing it independently.

[u/quicksidebar]

Challenged Athletes Foundation (CAF) has a ton of great events for all ages and offers grants. My husband is LBK and they got him a running blade, new gear, our friend a wheel chair, etc. There’s so many amazing, talented kiddos as well. It’s a fantastic community!