A Community Divided

Right now, there is a debate in the SMA community (at least on Facebook) about quality of life, centering on those with Type 1 – the form of the disease that Andy had. This debate has pitted people with the disease and families who have been more invasive in treatment for their children against families who have opted for palliative care and, in some cases, who have lost their children. Some ugly things have been said, and feelings have been hurt. What it really means to be hopeful and happy – for people on both sides of the debate – has been questioned. And, so I’m weighing in with my perspective on the issue and hoping to be a voice of reason.

I’d like to believe that all of us in the SMA community do the best that we can with the information that we have. I’d like to believe that we all strive to live our lives to the fullest. If we are parents, like I am, I’d like to believe that we all make the choices (which are often very tough) that we feel are in the best interest of our children.

My family’s personal experience with SMA was fast and furious. My son Andy was officially diagnosed on March 17, 2009. His disease progressed very quickly, and he weakened significantly, causing him to be hospitalized for several weeks at a time. My husband and I did all the research we could to understand the disease and listened to the advice of our doctors and specialists in crafting a care plan, specific to Andy’s needs. We contacted Hospice to assist us with in-home care. We measured our options very carefully and thoughtfully. More importantly, we listened to Andy and tried to follow his cues every step of the way.

Andy spent much of his life post-diagnosis in the hospital, and the quality of that time wasn’t the best. He had a g-tube placed to facilitate feeding. We tried using cough assist on the advice of other SMA families, but it made Andy miserable – he fought the machine with all of the limited strength he had. We administered regular nebulizer treatments to help him breathe easier. He took a laundry list of medications to fight reflux, to promote muscle strength, and to combat pain without compromising his respiratory system. We searched for other treatment options (like NIV protocol), but encountered a lot of resistance from our pulmonology group. Andy was on supplemental oxygen, and we wanted to try bi-pap to help him, but our doctors wouldn’t prescribe it. We fought for our son every day – in and out of the hospital.

And, we have never stopped fighting – even though Andy is now gone. We still work to raise awareness and to raise funds to support research for a cure. But, the reality of our SMA experience is that we had just eleven weeks from Andy’s SMA diagnosis to his death from aspiration pneumonia on June 4, 2009.

Do I think that every choice we made in Andy’s care was absolutely right? Of course not. But, I can say with certainty that we made the choices that we thought were best for him at the time. We followed his lead – if Andy was smiling and laughing, then we believed that we were on the right track. We did what we thought he would want in every situation – and that included letting him go.

If my son had been a stronger Type 1, would we have made different choices? Maybe. Regardless, we would have weighed the options and done what was best for him. I feel it is very important that every family facing a diagnosis receive information on all care options and make their decisions free of pressure from any “side.”

Do I believe that we were “lazy” parents, as some have claimed about people who turn to Hospice, because our care choices were more palliative in nature? Or that we were making an “easier” choice by going this route? Absolutely not. Nothing about any of the decisions that we made was easy.

Do I believe that we “gave up” on our son or “had no hope” because of the choices we made? Hell no. I never did and I never will give up on Andy. He taught me how powerful hope for the future is – even if life doesn’t turn out how you’d once hoped it would.

Do I believe that administering palliative care is comparable to murder as one SMA community member opined? NO! And, I can’t express how offended I am by that sentiment and how hurtful it is to parents like me.

Do I believe that my son would have absolutely no quality of life had he lived? Again, no. I believe that we would have continued to fight for his happiness and comfort, just as we did during the 20 short weeks of his life.

Do I believe that people who make more invasive choices to keep their SMA-affected kids with them should be questioned about quality of life issues? Definitely no! I have the privilege and honor of knowing many families with amazing Type I kids. I read about them on Facebook, follow their blogs and YouTube videos, and cheer them on with every milestone that they overcome.  Some, I’ve been lucky enough to meet in person. They are smart, beautiful, and fearless people – I would have been so proud for Andy to be just like them. In fact, I see Andy in the light in their eyes and in the shadow of their faces. Their parents work very hard to ensure that their lives are full and happy.

Just as I worked hard for each of Andy’s smiles.

The sticking point in this debate is that the nature of “quality of life” is entirely subjective. What makes me happy and fulfilled might make you miserable. What makes my children laugh may incite riot with yours. What gives me hope may be depressing to you and my definition of strength may seem weak. All of our decisions are influenced by a host of outside forces – including our morals, our belief systems, and our values – which are unique to us. Each of our children is wonderfully different. I don’t live your life – or your child’s life – and I won’t judge how you chose to live it. As it has been pointed out by others, life is terminal for all of us.

But, for my son, the end came much sooner than we ever feared. SMA is to blame for that – not my parenting. Even if we had been more aggressive in care choices, the sad truth is that he still might not have survived. My husband and I learned that, despite the decisions we made, it simply wasn’t up to us – we are not the ones in control in this life. And, none of these choices for our son had any impact on any family other than ours. We know in our hearts – whether you share our conviction or not – that we did what was right for our family.

At the end of this debate, my opinion is just that – an opinion. I believe that we all love our kids and want them to have great lives – whether they have SMA or not. I will continue to naively wish that the SMA community could just let go of the negativity and simply be supportive of each other. No family in this community should feel judged, nor should they feel like they have to defend themselves. We all are affected by a life-changing disease. We all need to show respect – regardless of whether we understand or agree with how any given family is handling the diagnosis.

And, when a new family enters our ranks, we should embrace them with open arms and open hearts. We should provide them with access to knowledgeable doctors and our learned experience – with no pressure. We should share our stories and introduce our kids. We should have compassion for them, not condemnation. We should remember what it was like to receive this devastating diagnosis and treat others how we would like to be treated. We should stand united as a community in search of a cure, not divided.

–Audra Butler

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14 Responses to A Community Divided

  1. Lynn Agnew says:

    Absolutely eloquently said, and as merely a mother, and not one who has ever come close to seeing, feeling, or experiencing your journey, I am with you on every point, and must, once again, applaud the spirit of Andy within you that gives you the strength to fight..advocate, educate..and hopefully one day change the face of this horrible disease. All my love, beautiful momma.

  2. Rosemary Perry says:

    As always you are the voice of reason and compassion and you know how to write about very tough issues with eloquence ad empathy. I hope the SMA community will take heed and stop the sniping and judging. It is not productive in any way.

  3. Paula Lavigne says:

    Very well said.

  4. Siobhan Whitfield says:

    I’m so stunned and extremely disappointed that SMA families can stand in judgement against other SMA families. In fact I’m too upset to say anymore about it. Thank you Audra – for being you xoxoxo

  5. Angela Birkle says:

    Well said Audra. So beautifully and eloquently put. Unless you walk a mile in anothers shoes you cannot judge. Regardless what we face as mothers we each make the best decisions for our children at the time. Andy is one lucky boy to have such a wonderful mother who lived him and did right by him during his short life and who continues to do all in his memory now. God bless you and your family Audra. And thanks for sharing something so personal. xo

  6. Meredith says:

    Could not have said it better myself. Every time I hear someone complain about a parent who chooses palliative care, I remind them that that is their decision for their child, not yours. It is no different than people saying to a parent who takes more drastic measures that they are only prolonging pain or that the quantity of life is not as important as the quality of life. We cannot judge one another. We are in this together. We must support one another’s decisions and fight against this disease that affects us all, not each other.





  8. Kristen says:

    Sure your heart hurts that this had to be your blog today. Thinking of you. xoxoxoxo

  9. Andy's Auntie Audrey says:

    I too am sickened that ANYONE who has seen SMA in action and the effect it has on both the child and the families could even have such a vicious thought enter their sphere of consiousness. Andy was one of the toughest little fighters I will ever have the honor of meeting or calling family, no one fought harder to try to save him than Alan and Audra nor could they have done more in their circumstances and the hand they had been dealt, and for that I know Andy is very proud and when the most difficult choice came at the end Andy took the necessity for them to make that final decision away and made it for them, while we all held him as he decided to leave. The only thing I can think (not having read the post) is that this woman is so angry at her situation and the helplessness she feels that she wants to lash out at anyone, perhaps because she feels she should go the road of palliative care but doesn’t have the courage and is angry with herself. I don’t know but really SMA is the problem here and all families concerned need to support each other REGARDLESS of whether you agree with their choices or not. Thats my thinking anyway.

  10. Megan Morseth says:

    Our dear friends’ sweet baby girl died of SMA less than three years ago. I know for a fact that they miss her desperately every single day. How she lived is so much more powerful and meaningful than how she passed. To judge her family and the choices made (and I use that word “choices” with great reserve. The decisions made by SMA families are so limited) does little more than inflict additional pain where there is already so much.
    Perhaps every parent in judgement of one-another should reflect carefully on his or her own behavior. I’ve always believed that those who so harshly judge are often those most deserving of close inspection.

  11. Sheree Norton says:

    So beautifully stated. Just today, I broke down reflecting on all the decisions we have made for Savannah and questioned have I made the best of them for her quality of life. When I saw this today it was a God send because I am uplifted that as you stated “quality of life is subjective”. So, I need not worry am I being judged by others or ponder the decisions I have made for her. My intentions have always been in her best interest and our love for our precious girl. Thank you for your courage and genuine love for the SMA community.

  12. So well written Audra. We’ve only been diagnosed for about a month and half and I’ve just started to realize the tension between the groups after I joined some of the support groups. I’ve been following Avery’s Bucket List and I’m so worried for them. Their happy attitude has been such an inspiration for me this week but after reading the comments and backlash from some of these other families, I am thrown to the floor again by the sadness. There’s not even safety and understanding from the SMA community and once again I feel so alone and sad and scared. I wonder how much of this tension has in itself kept SMA quiet, because these decisions we have to make, well they aren’t things you want to talk about out loud, so is that contributing to the SMA silence and lack of awareness? I love my daughter so much I just want her to be home with us.

  13. Denise Karabinus says:

    This is so well written and thought through. I have benefited greatly from the on line SMA community and have not seen or experienced any of the negativity that I have heard has existed here in the past. I have felt much support, positivity and learned a lot from the forums. I joined this community in June 2012 and our son lived for nearly 7 months and died on Jan 2nd. 2013 using a NIV palliative approach. Perhaps the community is evolving and learning from post like these? Maybe we are learning to be more supportive and keep harmful negative stuff out of it. I hope so. Thank again for your posts they are clear and educational. I appreciate your perspective.

  14. Christie Thompson says:

    As another SMA Type 1 family I can agree with you on every statement. It’s sad we can’t all support whatever choices others make. In the beginning I was totally against trache but when the moment came for that decision we did what we thought Zac wanted and its worked out for us. We have received many comments that “letting him go” would have been better for him. I beg to differ. In the beginning our doctors told us there was no “right” choice and every SMA child is different. Regardless this is a cruel painful experience for anyone and we should all support and stick together. Stop by our Facebook page Prayers for Zachary if you get a chance. He was diagnosed at 6months and trached at 8 months. February 28th we celebrated his first birthday!

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