Emily Rapp

Emily Rapp
Santa Fe, New Mexico, USA
July 12
Emily Rapp is the author of Poster Child: A Memoir, and The Still Point of the Turning World, which is forthcoming from Penguin Press in March 2013. She is also the author of many essays and stories in the New York Times, the Los Angeles Times, Bellevue Literary Review, The Sun, Body + Soul, StoryQuarterly, The Texas Observer, and other publications. She is currently Professor of Creative Writing at the Santa Fe University of Art and Design in Santa Fe, New Mexico and a faculty member with the University of California-Riverside Palm Desert MFA Program.


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MARCH 27, 2011 10:14PM

Lessons from a Dying Baby: One Mother’s Perspective

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Weighing in on the Baby Joseph controversy…

What can we learn from a dying baby? According to a priest who helped facilitate the transfer of Baby Joseph, a terminally ill baby, from a Canadian hospital to a medical center in St. Louis so that he could receive additional treatment to prolong his life, this is a “teaching moment for our whole culture” about the value of life. I couldn’t agree more, although the issue is less about value than it is about quality.

This is not just semantics. As the mother of a terminally ill baby who was recently diagnosed with Tay-Sachs disease, a rare, progressive, fatal neurological disorder that sounds not so dissimilar from Baby Joseph’s condition, I wrangle with end-of-life issues every day. The quick degeneration of my son Ronan’s brain tissue means that all his bodily systems will be irrevocably compromised by the age of two, resulting in a gradual disconnect from the faculties that make life livable: movement, vision, taste, touch, sound. He will not be able to speak or move. If only his body was devastated but his brain was intact, if he had the smallest foothold in any mental process or physical experience, would his father and I do everything possible to keep him alive? Absolutely. We can make the choice to keep his heart beating in the same rhythm we saw on an ultrasound in 2009, but our son will be gone. Life is about living. We believe that using extraordinary measures to maintain life in a vegetative state constitutes cruelty. Our obligations as his parents are to maintain his quality of life, and to help him die with dignity, without pain, and in our home.

That the courts should not decide the fate of any child with parents to speak for him or her seems obvious, and I empathize with Baby Joseph’s parents in a raw and gut-wrenching way. Losing a child (or, in our case, preparing for that loss over the course of several years) is sheer hell; I can disagree with Joseph’s parents without judging them while simultaneously indicting a culture determined to deny death to the point of grasping at any methods that might prolong “life,” without an in-depth exploration about what it is we’re talking about. Our family is faced with gruesome choices: how will we know when Ronan’s quality of life has diminished to the point where letting him go is the more humane option? Is it when he stops swallowing and vocalizing, when he can no longer see us or experience our loving touch? Any of these eventualities may coincide with the option for a feeding tube (the most likely first intervention) or they may not. No crystal balls, sadly. These decisions are made more emotionally complicated by the fact that the medical community in this country has become so expert at prolonging life to the point of being unwilling or unable to engage in any nuanced discussion about what it is they’re saving. With the exception of hospice, doctors offer little help to parents who are navigating this bleak terrain.

Case study: the neurologist/pediatrician/geneticist we’re working with all believe that not to insert a feeding tube for a child with a “terminal illness” would be “ridiculous.” Some other (in all fairness, solicited) advice: “I wouldn’t want to starve to death.” “We don’t let babies starve to death in this country.” “Putting in a feeding tubes is an easy procedure.”

But we are not talking about a starving child living in a country where food is not available and that’s why they’re starving. When I worked for a relief organization I met women whose children had died from malnutrition, diarrhea, typhoid, war-related violence, meningitis, malaria, botched abortions, fevers and the flu. In Ronan’s case it’s not an issue of a growling stomach, a bloated belly. It’s an issue of whether or not he will be alive in the world – reacting to it, aware of it, in it in any significant way at all.

A feeding tube may extend life Ronan’s life by six months, possibly longer, but this paves the way to other, more serious interventions that Rick and I will not consider because all the while Ronan’s brain is fading, fading, fading, and then it is gone.

We were handed this competing worldview from the hospice doctor about our son’s “life limiting” illness: “When the body can no longer feed itself, sometimes it is uncomfortable to provide nourishment. It’s the body’s way of shutting down.”

“It is not cruel?” I asked.

“It is not,” he said, and then, knowing I needed to hear it, he repeated, “it is absolutely not. At each point along this journey we need to ask, ‘what will this lead to? What is most humane?’”

Were the Canadian doctors who refused to perform a procedure that has no possibility of leading to Baby Joseph’s recovery passing judgment on the value of his brief life as the Priests for Life insist? No, they were passing judgment on the quality of his life, not its value. Nobody is debating whether or not Baby Joseph’s life was valuable – to his parents and to the world. But the controversy surrounding this single baby gives rise to difficult questions that all of us, parents or otherwise, work hard to avoid considering: What standards are we willing to use in order to judge the quality of any particular life? What kind of life am I willing to subject my baby to? Children on respirators eventually die of pneumonia or infection; biology makes the ultimate decision, and it is a retrojection of meaning and purpose to call this God’s will. To say that God will determine the length of Joseph’s life is ludicrous and a clever mask for right-leaning Christian apologetics. According to this logic, those who don’t have access to extreme medical interventions would conveniently have a God who decided to end life more quickly?

Father Pavone claims that this is “not just about one baby, it’s really about us all.” Absolutely. Is Baby Joseph’s life valuable? Yes. But is it worth living? I would argue no. Were the Canadian doctors correct to withdraw life-prolonging care? Yes. Was it their ultimate decision to make? No. As a mother I am charged with making impossible decisions about my child’s right to life, and I argue that it is his right to live as fully as possible, in the world, with at least some of his faculties intact, and that it is my burden and my right to determine when his quality of life has been irretrievably compromised. When my son’s brain is devastated and his body destroyed by this disease, to refuse to prolong his life through medical intervention says nothing about how valuable he is to me, or how impossible it will be to quantify his loss. The specific life of Baby Joseph raises culture-wide issues not about the obvious intrinsic value of life, but about what constitutes its quality, what makes it worth living, and, most importantly, who has the right to make choices – the hospital, the courts, the family, an activist priest? – for a baby who cannot speak for him or herself. Would I make the choices Baby Joseph’s parents made? Unequivocally no. As his parents, did they have the right to make that choice on his behalf? Undeniably yes.





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Who cradles a dying baby at her heart
sees expanding galaxies glow in little eyes
standing mute on stage in our open salon
so angels sing in trees on a river shore.
I have just gone through this on the other end and will be interested to see if, and how, your perspective changes on the flip side. What is keenly important is that you are aware you are your child's only voice and advocate. You will face a cacophony of opinion. Be informed, be intuitive, and love this child as much as you can while you can.
Oh, this is so well written and passionate. I totally agree with you. That is why Hospice is so wonderful and we are lucky to have that alternative to traditional medicine. When the time comes there are ways to think about and treat death that are real and loving. Any death. I was a hospice volunteer and learned so much from them. Thank you for writing this.
I am in agreement with you, quality of life is better than quantity. I struggle with this question regarding my son on a daily basis and have done so for half a decade. Hugs to you.
An impairment of vision occurs when we love, thank goodness, but when attempting to make decisions involving life and not life, the impairment has the potential to make it impossible to render the decision that would be the most loving one. I believe we will, one day, impanel people to make this choice for those that can no longer speak for themselves.
You are a brave and generous mother. Though I only work with adults, I see so many families making life extending decisions for terminally ill loved ones. Most of the time I am sure they believe they are making the decisions in the best interest of the patient, but I fear the decisions are unconsciously selfish ones. If a patient makes the decision to have painful futile treatments, that is one thing. If others make those decisions, they suffer the emotional pain, but must not realize the physical demands on the patient. And the result, the patient still has a terminal illness.
I often want to have vocabulary classes with families. They appear not to grasp the meaning of the words terminal and futile. With the older patient, families seem to forget that we will all die, they work in their mind,s to deny the possibility. With a child, that is of course another level of emotional pain and stress. A parent who makes a decision in the best interest of their child's potential suffering rather than their own emotional needs is brave, generous and most of all a wonderful parent.
You have done a wonderful thing sharing your story, I hope it helps all who read it. I hope it also helps you.
I do not know the technical terms or details of what the government dictates to us about this topic. I'm sure I would be shocked. I do know that my Church specifies that we are not obliged to use "extraordinary" means to keep someone alive. Now, what is considered "extraordinary," I do not know. With the advancement of medicine and technology, who knows for sure. I found this quote of yours,"a culture determined to deny death to the point of grasping at any methods that might prolong “life,” without an in-depth exploration..." interesting. Why? I think our culture is a culture of death and not of life. With the abortion rate as high as it is and the throw away of our elderly society, I don't think we value life. It's also a culture of legal terms and technicalities that are invented to complicate us all!
I feel for the suffering and agony you and your family must experience every day until your little one meets his Creator.
Emily, I just tried to paste a link here to send you the extraordinary blog I receive via email. Then I realized that you wrote it! You are Ronan's mom! I have to say that if I've had a tough day I can't always read your entries. But I try to because they are brave and beautiful. I admire your strength in writing your way through personal agony. In your writing I find that I learn a lot about living. Love to you and your sweet boy.
Thank you for this wise and reasonable voice. The natural progression of life and death...yes.
What a heart wrenching and difficult place to be, rendering your voice of reason and sensitivity all the more powerful. Thank you for sharing your view as a mother of a child with Tay Sachs. Like Kathy, I look forward to learning more from you as you speak from experience. LSD's comment expresses my feelings well. I can tell you from personal months of having experience that feeding tubes are unpleasant. I hated them. But they were a worthwhile price to pay for what they helped me reclaim. Should there have been nothing to reclaim and a future of increasing suffering, why on earth would anyone guarantee that progression toward it in the absence of a specific personal goal to fulfill? I think that says more about our own fears and discomfort with death then it does about our love for another. Wishing you and your child much shared, rich, love in the precious opportunity of the time you have left together.
your words tear at my heart. the hardest decision i made was to turn off cait's life support; i was strong at the time because i was only thinking of what was best for her, not me, not my husband, not her brother.

there are days i would give anything to go back in time to un-make the decision. but that would be for me, for my husband, for her brother. after 5 years she'd had enough. my own selfish needs would have kept her here til i died so i wouldn't have to lose her. (r)
Ever since I started reading your story, your family has been in my heart and in my thoughts.
Ever since I started reading your story, your family has been in my heart and in my thoughts.
Years ago when I was in the medical field I had the pleasure of taking care of an older lady who was returning home from having chemo treatments. To make a long story short she looked at me, being 25 at the time, and said "there are worse things than dying". I remember her to this day.

In Canada the parents knew what was going on and had a plan to deal with it. It was the government and doctors who wanted to over ride their decision. That I objected to. Now if they were clueless, that would have been a different story.

As for you, I'm sorry you are having to go through this. While it won't be easy, and you will be told everything from both sides, I'm a believer in that in your heart, as a parent, you will know when it's time.

Good luck.
I cannot imagine a worse fate than losing a child, and I'm so sorry that this is an inevitability in your future. I applaud your honesty and ongoing courage in doing what is best for your child. The day that we allow government and religious leaders to decide those matters that only parents know for sure is a sad day indeed.