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Ethics

It took 32 days to decide what to do with my son’s body. On grief, ethics, and death.

My eldest son, the first-born of a set of extremely premature triplets, died a few minutes after he was born. Defying the odds I remained pregnant with my other two boys for 24 days.

After holding him for some time in the delivery room, the same room where I myself had delivered hundred of babies and passed them on to families beaming with tears of joy, I was asked about his body.

His body? His body. Oh, his body.

How do you process that as a parent?

How do you process that when you have been a parent for all of three minutes?

Stronger, braver people than I, people forged of some unbreakable substance might be able to process and make arrangements (such an odd term, I mean one arranges flowers), although I suspect most parents in that terrible situation are like I was, bereft, adrift, and drowning in a river of lament.

I decided that I could not decide. I could not face removing my son’s body from the hospital until his brothers were born. The only thing I knew to be right was to keep my boys together in some way until they were all born. It was completely illogical, but there is no logic in loss or despair. I also knew my risks of delivering my other two boys before they could survive was very high and how could I make those kind of arrangements more than once. In rapid succession. Could anyone ever be strong enough to do that?

In the end, keeping his 1 lb. body in the morgue affected someone pushing papers who needed her desk cleared before vacation. One week after he was born and died some woman called my hospital room and in the most brusk, impersonal voice possible informed me that I must make a decision. Now. “We can’t keep his body forever, you know.” Eight words I will never, ever forget.

“But it won’t be forever,” I said. “Just a few weeks if I’m lucky.”

But no, in some twist right out of DIckens or Hardy I was told he would be sent to a communal, state burial site in 48 hours if I offered no alternative. That was the law.

I was still pregnant, still a few weeks from real viability, and thought the stress would quite literally doom us all. Fortunately, one phone call to my secretary, a few words barely intelligible between sobs, got her on the case and very important people intervened. After all, is keeping a tiny dead body in a morgue refrigerator long enough for a tragic pregnancy to come to fruition too much to ask? To one person it was.

Since I first heard of the Jahi McMath tragedy my thoughts have been with her family and have lingered more than usual on that terrible time for me. I understand the idea of not being able to let go. Not being able to process. Not being able to accept. I weep for them.

I understand people need time with a body before they can let go. If I’d known that July how I would feel today I would have asked for Aidan to be ventilated long enough so I could have held him just once while he was still warm. A chest moving, even artificially, knowing there was no hope of more would be a better memory than what I have.

I can’t understand someone else’s grieving, no one can. No one can tell you how to say goodbye, especially under such tragic circumstances. When death comes in such a horrific and unexpected way, in a hospital of all places, it might take longer to grieve and many parents might never be able to accept the tragedy or forgive themselves, no matter how misplaced the blame. Casually spoken cruel words from someone who “means well,” especially in a hospital, can also affect you in ways you never thought possible.

If no one had come to my rescue in the hospital I most certainly would have called a lawyer. I felt it was my right to keep my son with me while I was still hospitalized. It is easy to understand how a family drowning in a sea of despair might question the judgement of the specialists at the very hospital they most certainly blame for their daughter’s death. I can see how they would reach for any kind of life-preserver, especially if they felt pressured to let go. Wanting a specialist from another hospital to determine if their daughter is dead or might be, hope against hope, in a vegetative state or coma is completely understandable and really, should be standard practice in these situations.

But what I don’t understand is how a lawyer could take the clear medical facts, that someone is tragically dead and twist it into court orders and false hope under the guise of family rights. Not being able to accept that someone has died and needing more time to let go or needing an independent verification of death is very different from stoking a mistaken belief that death has not occurred. Intimating that a tracheostomy, a feeding tube, and transfer to another facility holds some kind of promise for life in this situation isn’t just unethical, it’s cruel.

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Discussion

22 thoughts on “It took 32 days to decide what to do with my son’s body. On grief, ethics, and death.

  1. As usual, you have an astounding view of the world from your personal and professional background. Thank you for sharing something so special in the hope that it will make a difference in some peoples’ cruelty and seemingly total lack of compassion.

    Posted by Barbara Bubar | January 11, 2014, 12:35 pm
  2. Jen, I always look forward to your posts. Your writing causes me to think. Often times we think we know all the answers when we don’t even know many questions. I am sure that I am not the only one who has followed this heart breaking story, I want to thank you for once again making me think about things that I may not have considered.

    Posted by rekster | January 11, 2014, 12:54 pm
  3. I too, look forward to your posts. I hope your other children are doing well. You give hope to me that there is a balance in the doctors world. Thanks.

    Posted by eric dillon | January 11, 2014, 1:23 pm
  4. I am astounded that anybody in a hospital could be so crass to a grieving parent. It really defies belief. It’s so far away form the humbling care shown by clinical staff, such as I witnessed from the ITU nurses when my sister died. I hope you make a formal complaint – everybody who works in a hospital should have at least minimal understanding of how to deal sensitively with the families of the dead and dying, it is a core skill surely?

    Posted by Guy Chapman | January 11, 2014, 2:50 pm
    • A friend of mine had open-heart surgery (bypass) at age 80 in a hospital in Denver. One of the ICU nurses told her that patients her age shouldn’t be eligible for such procedures because it is unnatural and against “God’s will.” Callous, unfeeling people are everywhere, including in hospitals.

      Posted by Connie Boyd | January 13, 2014, 9:03 am
  5. Thank you for sharing your experience and perspective on this difficult subject. I’ve been following this story with increasing dismay. While I think that Jahi’s family is pushing the limit of distrust and wishful thinking, you’ve made a very good point, that families need time to process such a shock. Our society has pushed death into the background, with a special industry to handle all the details. I think even the medical community is more comfortable with just signing forms and handing the body off to those specialists. We really don’t know how to handle people who need more time.

    Posted by marlenedotterer | January 11, 2014, 3:47 pm
  6. A friend of mine lost all three of her triplets, all boys. A few months later she got a letter from her insurance company “congratulating” her on her recent delivery. I wrote the return letter she needed to write but couldn’t; no matter where my writing takes me, it will always remain one of the best things I’ve written, because I didn’t tell them to go f*ck themselves, not even once, though they’d certainly earned that response.

    Posted by Jeni | January 11, 2014, 5:55 pm
  7. Thank you for sharing your story.

    Posted by Dr. Mom | January 12, 2014, 7:10 am
  8. Geez, Doc. Thank you for sharing. I can only imagine how hard it would be to make those kinds of decisions. It bothers me a lot when people who have not been in that position get all irrational and start off their opinions with “If that were me…”

    Thanks again.

    Posted by Ren | January 12, 2014, 7:42 am
  9. thank you for sharing your story.

    Posted by missj | January 12, 2014, 6:26 pm
  10. Please accept my sincerest sympathies on the death of your firstborn son. It is always a tragedy to lose a child, but to be treated in the way that you were by a callous question or demand like you were is unthinkable and in my opinion, totally uncalled for. Thanks to those who advocated for you in your time of grief. I hope that your other babies are doing well, and you come to peace someday. My preyers are with you.
    Nurse Mom

    Posted by Mary Schroder | January 13, 2014, 8:48 am
  11. My deepest sympathy in the loss of your son, Aidan. I hope that you continued to carry your pregnancy to viability and are raising two of your three sons. I also hope that this happened years ago, before the medical profession was more enlightened than we are today at least in the hospitals where I have have worked. We are able to tell parents who have lost an infant that the baby will remain in the hospital until the mother is well and released to home (no matter how long that takes or under what circumstances). My role is support parents in whatever ways I can, to make a sorrow filled experience less painful if at all possible. I can’t imagine why a tiny infant in the morgue would be a problem for anyone or what purpose was served by forcing you to make “arrangements” before you were ready to do so.

    Posted by Barbara | January 13, 2014, 10:41 am
  12. As a physician and father of triplets that are now 24-years-old, I am very sorry for the loss of your child. I hope your other children are doing well!

    Posted by Robert Luedecke | January 14, 2014, 11:09 am
  13. i used to work in a childbirth center ( labour, delivery, nursery, post partum ). 1 night, a mom presented with impending birth, although before viability, & before the obstetrician could arrive. very quietly, in dim light, her child was born, wrapped, & offered to her to hold immediately- this was an impulse i had, no procedure was written as to how to handle something like this. although brief, the baby & mom were together, aside from the weeks they had together before the birth-

    Posted by jackie | January 14, 2014, 2:07 pm
  14. I can most certainly relate to your story as what will be 17 years ago this January 24th, my little daughter, Megan was born at a small community hospital. After 12 hours of life, she stopped breathing & for some reason, it was not handled effectively, she incurred grave brain damage and was subsequently resuscitated and placed on a ventilator and transferred to a large teaching hospital. For 12 days, some doctors gave my now ex-husband false hope even though she had no reflexes and what was called a “burst-supression EEG”, as a nurse and her mother, I will never forget that haunting phrase! Finally, after many conversations w/ medical personnel and a second opinion from the neighboring large teaching hospital, my Megan was removed from her life support and we held her until she died again. I am not so sure that the way I went through this is really what you would have wanted as at the time I remember wanting to jump out the window, we were on a very high floor, and die right along with her. Slowly, she gasped for air, each agonal breath ripping my heart out piece by piece. I remember a priest in the elevator at the hospital saying to me, don’t worry dear you’ll have another one, as if children are puppies and you can just go to the pound and pick one out. Guess what, I never did “have another one”…. My sorrow is real and palpable still, it does stand on the side lines at times but, like a player at the ready, comes back into the game of my life at a second’s notice. My brother, at 49 and 1/2 just had his first child, a son, and I sobbed like a baby when I held him but, I feel so blessed to once again have a little one in our family. Life is a series of blessings and mishaps and how we respond to them lights the way of our existence. I thank you for your life story, so similar to mine, and I do pray that your other children are healthy.

    Posted by Michelle Fedirko | January 14, 2014, 2:24 pm
  15. Dear Jen, my great condolences for your loss and your anguish, and great hopes for the well-being of your newborn twins. I, too, lost a child at that developmental stage, after a car accident. This happened decades ago, and even though I had been rushed to the teaching medical center for the state’s medical college, I was told that there was no possibility that my preemie could survive, and that no effort would be made to save her. Because I did have some advance warning, I had the time to beg my parents (my husband was useless) to contact clergy and arrange for burial. My baby was actually born alive–she moved and wiggled briefly, but did not breathe spontaneously. (If she had, the hospital would then have been obligated to take her to the NICU) So, she died in my bed–which, frankly, was more comfortable than a delivery room–and immediately was whisked away, and released to our rabbi. She was buried before I left the hospital. It was a year before I could go to the cemetary to see the grave of my first-born, but I did. In later years I, did take my later-born children to her grave,so that they would know that they did have an elder sister. What I did NOT do was create a shrine, or have memorials every year, or refer to her as if she were a living child, or enter into what-if’s.about her life, or invoke her memory to my later children. She has not been forgotten–obviously–in the nearly 38 years since her death, but her loss has not been allowed to shadow the love and joy of her siblings. You will ache and sorrow for a while, and that’s okay. You will be furious with the medical establishment that couldn’t save your baby. You will even sometimes feel guilty about being cheerful and joyful and enjoying your other children. You will be fearful that disaster will befall your twins. (Note that your boys are TWINS, not 2/3 of triplets!) Those feelings and fears will pass, and you WILL laugh and smile again.
    The L-rd bless you and keep you and yours, and know that there are many things in this world that we do not understand and cannot explain in our present state of knowledge.

    Posted by Robin Taylor | January 19, 2014, 4:51 pm
  16. Jen, I just re-read your article. I’m glad you did NOT have your baby ventilated to simulate life that wasn’t there. You would have regretted that, and it would have created great psychological pain and trauma to you. There are many ways to show respect for life, and yes, acknowledging that it has ended is one of them.

    Posted by Robin Taylor | January 19, 2014, 5:21 pm
  17. I’m glad a VIP stepped in to help you. It’s unfortunate that it took such effort during a difficult time. Thanks for your story.

    Posted by dafyddkw | January 31, 2014, 1:01 pm

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