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Sunday, March 25, 2007

Is a disabled life worth living?

There is a discussion going on in several preemie centric blogs about whether the preemies should be resuscitated or not. The question has been raised regarding whether or not there should be limits (legal limits) or a cut off in other words. Should it be routine medical protocol to NOT resuscitate babies born below 21, 22, or 23 weeks? In all of these discussions ultimately the question of outcomes comes up. There is an argument that if parents were more informed of the high probability their preemie was going to sustain major injury and become permanently disabled that they would make the decision not to resuscitate. Over at Neonatal doc here there is the most balanced discussion I have heard between the different camps.

As a parent of a disabled, former 27 weeker preemie I can tell you that no matter how informed I could have been I still would have fought for Ellie’s life. One mother in the comments on this post captured my thoughts on this perfectly. She said that she thought parents fought for their preemie child’s life not because they were thinking they wouldn’t be disabled but because they were fighting for their child period.

An ER doc brought up the point as well that I have not thought about previously that in attempts to let preemies die (she actually said kill them) the preemies don’t always die and are further injured. That was a startling revelation.

Injured – that is another important point to bring up in this discussion. Preemies are people who are injured at birth. As people who are injured they are treated and current laws protect and entitle them to this treatment.

I also support parent’s choice.

In my experience with Ellie, she was so severely injured at birth that even with the vent and all that her amazing Los Angeles NICU had to offer the docs were still not sure she would make it through her first night, day, week, etc.

Now, four plus years later, we are parenting that same child who has multiple disabilities. If you ask me what her quality of life is I would say good. Yes she is in pain sometimes. But she is so loved. She is curious about the world. She has tons and tons of moments of each day where she is obviously (as observed by her smiles, laughs, giggles, and nuzzles) happy and having fun. I think if you could ask her, and as yet we can’t, she might look at you in confusion. She knows no other life. Ellie, I would hazard to guess, is sleeves rolled up, deep into the business of living life.

Do I think the disabled life is worth living?

I think that life is a sacred gift (and I DO NOT mean that in a Pro-life way as I am absolutely Pro Choice). I mean it in a true biological and spiritual sense. If we are only biological creatures, here by a string of random causes, then life is a sacred and fleeting thing that ends when we end. Ashes to ashes, dust to dust. If we are a soul who inhabits this body and will go on to other life times and other bodies life is sacred. It is a gift from god to unfold and learn to be more loving and compassionate.

When I first read Kay’s header on Gimp Parade I was astounded. It opened up my mind. I have worried quite extensively about Ellie’s quality of life and the wisdom of having fought so hard for each of the 133 days we were in the NICU and every day thereafter for her to survive. I worry about what will happen to her when I die. Then I read Kay’s header and started reading her blog and the blogs of other disabled folks and across the board I found a zest for life.

Here is the quote from Susan Wendell Kay has in her header on her blog you can find

The Gimp Parade
Not only do physically disabled people have experiences which are not available to the able-bodied, they are in a better position to transcend cultural mythologies about the body, because they cannot do things the able-bodied feel they must do in order to be happy, 'normal,' and sane....If disabled people were truly heard, an explosion of knowledge of the human body and psyche would take place. -- Susan Wendell, author of The Rejected Body: Feminist Philosophical Reflections on Disability

Would I have made different decision to save Ellie’s life in the NICU had I known she would sustain multiple disabilities? No. I asked Dave the same question and he gave me the same answer.

To do it over I would fight for her again just as hard. She has endured a great deal of suffering but who am I to say that it has not been worth it to her? If the soul theory it true, which is what I believe, then there is something very valuable that she has to learn from reincarnating into her situation this lifetime. The value to my own growth and development has been very clear to me since we left the NICU. Ellie and I were also very bonded before she was born. I even had a very clear premonition that she was going to have some sort of disability when we were one month pregnant. We were already knew each other when she was born. How could I not fight for her? I am so thankful she is here, even on the days when my back is killing me and I am exhausted. My life is more filled with love and I have become a better person from going through this experience.

That is our specific situation and my specific relationship with Ellie. As is obvious, there are as many differences in family situations as there are families.

I think that having a cut off is ethically a slippery slope. I can see both sides. I know that 21-weeker is facing many future and current medical hurdles. I also know that I would have been horrified if some doctor had said to me, “Well the cut off is 28 weeks and your baby is 2 days shy of that so by law we have to let her die.”

I think there is major UNDER reporting of the true outcomes of prematurity. Had I known the real statistics when Ellie was born it would only have better prepared me for our life together versus each disability being a new issue.

I think the inner growth and expanded capacity for joy that parents get from the experience of having things go differently than planned is missing from a lot of these discussions.

Do all parents feel the way I do about having a child with disability? I don’t think so. In our NICU we were in the minority of parents who were there every day. Some came intermittently others not at all. Would knowing the statistical outcomes of prematurity lead some parents to make different choices? It might.

Having accurate information out there regarding the risks and outcomes of prematurity is important to properly educate society. There were so many people who just wrote us off because they know a preemie down the street who is just fine. The miracle baby myth only dampens the willingness of society to support parents and caregivers of the disabled.

Parents of preemies need a lot of support. I would have loved it if, just once, when we had first moved to Boston, instead of frowns and stares from the crusty New Englanders at my baby, any one of them would have said, “Oh a feeding pump. She must have been born early. What a dear she is. How are you doing?” But all they could see is the pump and Ellie's misshapen head. We were frowned at and given dirty at the play ground because we were messing up people’s days with our presence and our 24/7 feeding pump.

This lack of support in terms of services and access to society is a BIG issue for the disabled and those who care for them. It is getting some play on the perifery of these discussions of resuscitations and in cases like
Ashley Treatment and the 21-weeker recently sent home. I am glad the issue of cut offs has been raised in that sense. I do think it is a little off the mark in terms of what we really need to be talking about. There needs to be better representation of what it means to have a baby prematurely and the sequelae. The question needs to be answered regarding how can we help disabled children and adults become true members of society by providing access and promoting understanding of disability so that it is not looked on with fear as many disabled people are as mentioned in Jacqui’s latest post here.

I truly believe that a society without differences, without disability, is unrealistic. The real issue is society’s unwillingness to commit to embracing all of it’s members with respect, dignity and the intrinsic understanding that everyone has something to contribute, teach, give and learn to the betterment of humanity.

The abuse that many disabled people suffer is a perverse and primitive response to fear and ignorance fueled by this lack of understanding, inclusion and tolerance (as witnessed by the lack of access) of differences in our society.


Jacqui said...

I am pro-choice. I do not belong to any religion. And if you were to ask me my beliefs - well I don't really know what they are. Faced with what I was told was an unviable pregnancy, I fought hard for my babies life and gave up a lot of what was precious to me at the time. And if I was to go back, I wouldn't change that decision at all.

Life to me is so precious. I could not imagine a situation where I would think that a person's life was not worth living - disabled or not.

As a society, we have to stop obsessing over what we wear. What cars we drive or how we look. This is not what defines us as a person. We are defined by how we treat others and that is why there should not be discrimination in any form. I believe that society can change. And I believe that it will be children like Ellie and Moo that will lead the charge.

I read all the comments on ND's latest post but couldn't comment myself. I'm sick of being attacked and told I'm wrong by people who know nothing about me or my life. Just because someone writes that I am wrong, doesn't actually mean they are right.

Take care Kathryn.


Ryn Tales said...

Jacqui - I totally agree with all you said. Neonatal Doc's latest post seemed like he was a bit sick of getting attacked too. It stinks that a person can not share a positive view point regarding the experience of raising a disabled child.

I know a few couples who of have adopted children with disabilities and love them enormously. It totally feeds society's fear of disability to not speak up against the view that our lives have been ruined by this. They haven't been. Life is way better for me now than it was before Ellie. And that's not because I was down and out, on the contrary. On paper my life was picture perfect spectacular. But now I have changed and am focusing on the things that really matter - like the love of my daughter. I am glad to have changed.


lori said...

I love reading your blog. Your love for Ellie shines through in each and every post. I have a 28 weeker who was IUGR and gratefully at this point is catching up in most every way. I don't have my blinders on...I know we could be hit hard at school age with some stuff...but that could have happened with a FT baby. My DS is 18 mos/15 mos and the only thing he is not yet doing is walking unassisted. He will walk holding hands, behind toys, etc. His PT says he just doesn't want to yet and assured me that since his adj. age is 15 mos he has time.

We knew we could face some uphill battles and the life of a preemie parent is pretty much never normal. But how could you go back to "normal" after facing all we have been through with our children?

Honestly...I sincerely think that in some ways I am more appreciative of the gift of being a mother than I might have been otherwise. Not saying I wouldn't change it...but I am making the best.

Thanks for such a wonderful blog.

Btw, I am also very analytical re:these studies on preemies....methodology and definitely n's. I was a pharma rep for 9 years and definitely know how to pick a study apart. There are very few well designed studies on prematurity. I really hope to see more.

Thanks again for your's great!


Ryn Tales said...

Lori, Thanks for the compliments! Also, and this is what I love about blogging, you bring up a really important point. I used to say the same thing and still feel it every day, that I am more appreciative, engaged, and grateful to be Ellie's mom probably more so than I would have been, had she not nearly died on me so many times. Going through that makes you grateful for every moment with your child, and you never take any of those moments for granted.

Your little one is lucky to have you and I am glad to hear they are doing so well.


Blue / Kay Olson said...

Thanks for the link -- I love that Susan Wendell quote so much because it challenges all of us. Me too, everytime I reread it.

And thanks for writing all you do in detail about yours and Ellie's life. It really adds to my understanding of disability to see what your life is about and the very different social policy challenges you confront. From all I've read here, you're very cognizant that the disability experience you have and the one I have or Ellie has are different and I really respect your explorations of that. From my perspective, your experiences are quite different from the person who is disabled themselves, but no less valid and meaningful to disability issues.

Ryn Tales said...

Kay -thanks. It's true our experiences are different. I love your blog because you are relentless in your passion to shed light on the issues you face. I read it because I want to understand the world Ellie faces. I know her experience is different from yours and others - that's why I read a lot of blogs by disabled people. I truly do want to understand and help others understand our world too. Thanks for recognizing all of that.


Lori said...


(Different Lori here :-))

As you know, I respect very much your viewpoint and I love your outlook as a mother of a child with disabilities.

The only counter point I would like to raise is that in many, many hospitals it IS routine medical protocol not to resuscitate babies below 23 weeks, and in many hospitals that includes babies between 23-24 weeks. I don't have numbers, but I can tell you I have participated on several loss support lists with members numbering in the hundreds and many of those women lost babies between 22-24 weeks and most were never given the option to resuscitate. My husband and I were told viability begins at 24 weeks, and therefore we had no idea we had anything to fight for. I know many other parents are told the same sort of thing, and yes, even at highly advanced Level III hospitals.

So, my only point is that many of the babies who are "let go" at these gestational ages are not the result of parental choice. Also, I would also like to note that I have not heard of a single case of a preemie below 24 weeks who survived without aggressive medical intervention. I take issue with the idea that we are "killing" these babies when their deaths are completely natural, and the direct result of their extremely premature birth.

This is a tough topic for me too, for very different reasons of course.

Ryn Tales said...

Hi Lori (different Lori) - you are reiterating my point wonderfully. I agree that you and other parents like you should have been given the choice. That is my point. I am against cut offs and am for parental choice. I am saying that parents ultimately, armed with the real and current statistics, should be the ones to decide. I also am glad that law is in place and wonder if it was not when your twins were born or if the hospital broke it.

Also, regarding "killing" them. Those are not my words - it was the ER docs words. And yes - they are harsh. Her comments on Neonatal doc just brought up a whole other aspect I had not thought of as discussed in the post.

Thanks for bringing up about an important aspect of this whole issue. That some preemies receive no medical intervention due to hospital protocols should not be forgotten and needs to be addressed. Like I said, if Ellie had been refused treatment I would have been devastated among other things. Had she been refused treatment, died, and then I discovered lots of other 27 weekers being treated and surviving... ok too many strong emotions to attach to that for this comment. But it would have been very bad.

Erminia Cavins said...

I believe that no human being chooses to be disabled, but that doesn't mean that he can't achieve anything. Take Stephen Hawking for example. Even though the disease he had caused him to lose motor skills, he never ceased to believe in what he can achieve and made huge contributions to science. Also, remember there are a lot of people and support groups dedicated to help them ease the load off a bit. It doesn’t hurt to seek help when you know that it’s for your own well-being. :)

Erminia Cavins