Publication: Kids with Severe Disabilities are Happy!

[Anniesmom]

Hello,
I've posted here in the past about policy/resources and traches. I'm from Canada and my daughter's death at age 80 days from undiagnosed respiratory issues has left me concerned about discriminatory policies or practices related to disabled kids. To this day, I have not met a child with a trache and a developmental disability from Canada. There must be one....somewhere.

I have discovered that many providers have a negative perception of the quality of life of children with significant disabilities. (My daughter had trisomy 13). So, with two great doctors (A neonatologist/ethicist from Montreal and the director of ethics at Seattle childrens) I undertook a research project to report, for the first time, the parental perspective of having a child with trisomy 13 or 18. I don't know if anyone's child has one of those conditions on this board- but I suppose the experience is the same for anyone who has a medically fragile child with significant disabilities.

Our research was accepted for publication by the best journal and came out online last week. I thought I'd share the abstract with you, in case it is of interest.



The Experience of Families With Children With Trisomy 13 and 18 in Social Networks

Annie Janvier, MD, PhDa,
Barbara Farlow, BEng, MBAb, and
Benjamin S. Wilfond, MDc

+ Author Affiliations

aUniversity of Montreal, Pediatrics and Clinical Ethics Sainte-Justine Hospital, Montreal, Canada;
bPatients for Patient Safety Canada, Mississauga, Ontario, Canada; and
cTreuman Katz Center for Pediatric Bioethics, Seattle Children’s Research Institute and Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington

Abstract

BACKGROUND: Children with trisomy 13 and trisomy 18 (T13-18) have low survival rates and survivors have significant disabilities. For these reasons, interventions are generally not recommended by providers. After a diagnosis, parents may turn to support groups for additional information.

METHODS: We surveyed parents of children with T13-18 who belong to support groups to describe their experiences and perspectives.

RESULTS: A total of 503 invitations to participate were sent and 332 questionnaires were completed (87% response rate based on site visits, 67% on invitations sent) by parents about 272 children. Parents reported being told that their child was incompatible with life (87%), would live a life of suffering (57%), would be a vegetable (50%), or would ruin their family (23%). They were also told by some providers that their child might have a short meaningful life (60%), however. Thirty percent of parents requested “full” intervention as a plan of treatment. Seventy-nine of these children with full T13-18 are still living, with a median age of 4 years. Half reported that taking care of a disabled child is/was harder than they expected. Despite their severe disabilities, 97% of parents described their child as a happy child. Parents reported these children enriched their family and their couple irrespective of the length of their lives.

CONCLUSIONS: Parents who engage with parental support groups may discover an alternative positive description about children with T13-18. Disagreements about interventions may be the result of different interpretations between families and providers about the experiences of disabled children and their quality of life.

[Shauna]

My daughter is severely disabled and is the happiest child I know...no exaggeration! It took me a long time to realize that she doesn't have it "bad" and she's not suffering. Sure she's had bad times, but overall her quality of life is very good. We have a hard time imagining living our lives being 100% dependent on a caregiver. We think it must be horrible. But she knows no different. All she knows is she has a family who loves her and tons of friends that all fight over who gets to be her "best" friend.

Her nurse just sent me this pic of her today...does this look like a suffering child? LOL



I feel you have to be very close to these children to really get past the whole "if I was like that I'd be miserable" attitude and see that they aren't sad and depressed like we think *we'd* be! Quite the opposite!

[Anniesmom]

Thanks for sharing your experience Shauna. It is interesting how many people automatically equate disability to suffering. Kids with trisomy 13/18 have been extremely disadvantaged right from the time that the conditions were identified with genetic testing. There is a wide spectrum but what was certain was the associated disability and that fact almost annihilated this class of children. In fact, an international guideline, developed by a team of neonatologists presently exists and has been adopted by most countries (including Canada and the USA) that states that children with trisomy 13 and 18 should not be resuscitated due to "unacceptable morbidity." Yet until now, nobody had asked the parents about their experience.

Here is a video about one child: http://www.youtube.com/watch?v=cteTcuI-xYI

[Ainsley's Mom]

The thing that I notice is that 50% of the parents said that it was harder than expected to take care of a severely disabled child. Of the other 50% I wonder how hard they expected it to be. Was it asked if anyone thought it was easier than expected? I'd be curious to know that.

Even though it is hard for the parents, there is no question in my mind that these kids would choose life and that from their perspective their lives are every bit as meaningful as the rest of ours.

Many people are treated for medical conditions for which they can't be sure of an outcome. Cancer. Heart disease. Organ Transplants. In all these situations you may only get a short extension of life, or a few years, of course we hope for the best outcome, a long life. I believe the difference comes down to intellectual disability. Though it's true many kids with intellectual disabilities do get operations.

When I was on the airplane to Cincinnati in May I met a lady who had a daughter with Trisomy 18 and she lived until she was 36.

I personally think there is a discrimination against kids with Trisomy 13 & 18 when it comes to how to handle the tough decisions when they are born. I do think we might see this change in the future.

[Anniesmom]

We were actually pleased by the response of the parents regarding the effort to care for their child. The reason for this is that this revealed that the parents were being honest and not trying to paint a rosy picture. About half said the care was more difficult than they expected and more than that admitted to financial challenges. So when they responded that their child was happy, enriched their lives and was a positive influence on the adults siblings would grow to be, they were clearly responding honestly.

[Shauna]

I would be one of those people who would have responded that taking care of a disabled child was easier than I thought. When I first realized the extent of Charlie's disability, I was terrified. Terrified of raising her. Terrified of her becoming bigger and bigger. I'm a little ashamed to admit I was selfish enough to worry about how I was going to find time for vacations, and how that dream of having the kids out of the house in 20 years and being kid free and still young went right out the window. When I found out that kids like Charlie often die very young, I was sad, but also relieved. Taking care of a disabled teen/adult scared the heck outta me!

But now that I've lived it for almost 5 years, I'm not scared anymore. Charlie really isn't that difficult. Sure, she's going to get bigger, but she's never going to be huge, being at a disadvantage nutritionally. We get nursing help, but if that suddenly disappeared, I think I'd be ok. It's not fun to be a nurse AND mom, but the nursing duties surprisingly don't take as much time as you'd think. And I've learned to just incorporate it into my day. Going somewhere? Don't forget to pack meds and supplies, just like I wouldn't forget to pack my son a lunch box.

I've written on my blog about ways Charlie is easier than my son. Sometimes parenting her seems like a breeze compared to him. There's so much I don't have to worry about with her. She's easier to keep happy, for one. She doesn't ever annoy me until I want to hide in my room with the door locked (I can't say the same for my son ).

[Ainsley's Mom]

Originally Posted by Shauna

I would be one of those people who would have responded that taking care of a disabled child was easier than I thought. When I first realized the extent of Charlie's disability, I was terrified. Terrified of raising her. Terrified of her becoming bigger and bigger. I'm a little ashamed to admit I was selfish enough to worry about how I was going to find time for vacations, and how that dream of having the kids out of the house in 20 years and being kid free and still young went right out the window. When I found out that kids like Charlie often die very young, I was sad, but also relieved. Taking care of a disabled teen/adult scared the heck outta me!

But now that I've lived it for almost 5 years, I'm not scared anymore. Charlie really isn't that difficult. Sure, she's going to get bigger, but she's never going to be huge, being at a disadvantage nutritionally. We get nursing help, but if that suddenly disappeared, I think I'd be ok. It's not fun to be a nurse AND mom, but the nursing duties surprisingly don't take as much time as you'd think. And I've learned to just incorporate it into my day. Going somewhere? Don't forget to pack meds and supplies, just like I wouldn't forget to pack my son a lunch box.

I've written on my blog about ways Charlie is easier than my son. Sometimes parenting her seems like a breeze compared to him. There's so much I don't have to worry about with her. She's easier to keep happy, for one. She doesn't ever annoy me until I want to hide in my room with the door locked (I can't say the same for my son ).

That last bit is true for sure. Ainsley is so much easier going than my other two and generally easier to please. Though we are seeing signs of that changing as she becomes more independent.

I do think how a parent feel depends somewhat on how much care is required which varies a lot from kid to kid. Ainsley isn't as difficult at age 5 as she was the first two years (because she needed constant suctioning and had a lot of surgeries). Size is a huge concern to me. Ainsley is 5 and nearly wearing a size 7. She weighs 51 pounds. She's not chubby just built like a ton of bricks. It's already difficult to pick her up and put her in the car. I think she will be able to help but not all kids can and it becomes very physically challenging for the parent. Especially in the cases when the kids become full size adults of aging parents. I don't think that's as much of an issue for Trisomy kids who I think tend to stay small. I also think it's easy to underestimate the value of having nursing. Not all parents get nursing I think that it really helps even if you aren't using that much of it.