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prematurity

Mother of 3, parent of 2. Reflections on the saddest sorority.

Today is my eldest son’s birthday. It is also the anniversary of his death.

It is a complicated story. I had triplets and then my membranes broke at 22 1/2 weeks. My first son’s death was foretold before his first breath. A real life fairy tale curse.

I knew I had no magic to break the spell. After all I am an OB/GYN and when membranes rupture so prematurely delivery is almost guaranteed by 48 hours. I needed at least 10 days. However, I am also human so by day 3 of the pas de deux between delivery and death hope began to root. Maybe I would be in that very lucky minority who hangs on for a week or even two? Maybe I would take all three home? I resented this hope because my training told me it was a lie and yet I couldn’t stop myself. Turns out hope was a better analgesic than anything science had to offer although it gives one a hell of a withdrawal. Everything has a price.

By the end of the third day I could almost see the possibility of success, like turning the dial on a radio and passing what seemed like a station if you strained really hard and listened with the ear of faith. Bias is a bitch. Then it all vanished in seconds. I was a parent and then I was not. My son lived three minutes and then I was left as alone as a human can be.

Subtraction is the worst kind of maternity math.

Everyone who came into my room wanted to know what had happened. I guess I did too, but less in a practical way (I mean I was there) and more in a why me kind of way. Over and over again I had to recount the most painful moment of my life, the story of how three became two, to visitors who ignored the no visitors sign. To medical professionals who couldn’t be bothered to read my chart or if they had they didn’t understand it. Read the fucking chart or ask my doctors I wanted to say, but my brain wasn’t working right and I was trying not to get upset and rupture the next set of membranes.

The worst was the woman from the Ministry of Miseries who insisted that keeping my son’s 1 lb. body in the morgue was some kind an imposition and if I didn’t figure out what to do with it before she went on vacation off he would go to a pauper’s grave. I just wanted him in the same building until I delivered, I had some odd notion that I needed to keep my boys physically close for as long as possible, but she was determined to make me the protagonist of a short story about the horrors of neonatal death co-authored by Thomas Hardy and Charles Dickens.

There was so much badness. partly because it was a medical emergency and partly because some people were thoughtless or horrible or both and also because for the short time Aidan lived people were slamming needles and things into me so I couldn’t see him or touch him while he lived. The memories of my first-born are simply the things that were done to me to keep my other two alive. That is just so messed up there is no other way to say it.

Dealing with Aidan’s body almost killed me. If I hadn’t had my other two boys when I picked up his ashes I could have seen myself just walking into traffic with the urn. I don’t know if I would have done it, but people need to know that is how bad it can be. Maybe it was just that bad for me. Maybe not. Every time I read about a new state law forcing arrangements for fetal remains I feel this scab break. I feel the pain of these women I will never meet. Leave them alone I want to scream. Man’s inhumanity to woman runs deep.

There was kindness too. My secretary who stepped in to ward off horrible people with horrible paper work. The neonatal nurses who paid silent homage to Aidan by naming my boys triplet B and C when they were born at 26 weeks. Another administrator who stormed down to the blood bank when my boys were born and needed immediate transfusions because she was a match.

I have a photo, the kind where they dress your dead baby up to not look like a dead baby or at least they do their best. The photo arrived weeks later. It’s ghastly. Maybe I am just too much of a realist but I just don’t want that image as my memory. I do have the little outfit they dressed him in and that is something special. I feel the wool on my finger tips and there is little speck of his blood and that tells me he was real. I truly have nothing else tangible.

People knit those little outfits. That is a great kindness. Someone also did their best with the photos and the developing and such and so years later you realize there was a lot of behind the scenes kindness and that helps.

Sometimes it’s all good and you only see two children in photos instead of two and a space. Sometimes you run your fingers through two heads of hair as you are all snuggled on the couch and you feel two different textures, but sometimes your hands also search for the feel of the hair that isn’t there. Would it be like one, the other, or entirely different?

Questions with no possible answer are hard and they never stop. I am used to quieting my own voice, but unfortunately the innocent questions of others do continually take you by surprise.

“How old are your boys,” nameless person asks.

“Thirteen,” I say.

“Twins!?”

Do I tell the truth and run the gauntlet of questions or swallow the fire and say twins? Even on their birthday, now such a cause for celebration as they were the boys who almost did not live, there is no break. Especially on their birthday there is no break.

“Twins!” the person taking the order at the bakery would say. Now I just bake the cakes.

Even years later you can’t really talk about it. Trust me, nothing sucks the life out of a room faster than telling people you have a dead baby. Or had a dead baby. What is the correct terminology? It probably doesn’t matter. Or does it? I feel bad that I don’t know. So you join the saddest sorority. It’s not that you seek each other out, but knowing someone who has lost as I have and can still draw breath is a sort of comfort. I suppose it is like knowing that someone else has colonized the most inhospitable planet in the universe so at least you know it can be done.

 

Discussion

48 thoughts on “Mother of 3, parent of 2. Reflections on the saddest sorority.

  1. Thank you for sharing. Your honesty and courage makes a difference

    Posted by Tara Johnston | July 7, 2017, 6:51 pm
  2. I’m so sorry.

    Posted by dawnk777 | July 7, 2017, 6:52 pm
  3. Peace be with you in your loss … And joy be with you and your living sons. Bittersweet. ❤

    Posted by elizabetcetera | July 7, 2017, 7:11 pm
  4. I’m so sorry Dr. G.

    Posted by Diane | July 7, 2017, 7:11 pm
  5. Beautifully written. I hope some people will learn something from your pain. He will live on in your memory and so don’t feel you have to stop remembering or speaking of Aidan.

    Posted by Robin | July 7, 2017, 7:12 pm
  6. I’m so sorry for the loss of your baby and the thoughtless, unkind people. Sharing such a personal story will resonate with so many other women who have lost babies. This seems like an issue where women need to support one another more than we do.

    Posted by ZenHeathen | July 7, 2017, 7:55 pm
  7. Such a powerful, important story — especially coming from you with our experience and deep insight into women’s lives. I appreciate your telling this, it helped me understand what this loss means and how long it means. Thank you.

    Posted by Jan Wilberg | July 7, 2017, 7:58 pm
  8. Heartfelt thanks, Jen. ❣️

    Posted by Patricia | July 7, 2017, 8:12 pm
  9. Dr. Gunther thank you for sharing your story… Our heart goes out to you

    Thank you for all the hard and dedicated work you send us about the modern day charlatans…..

    I think the Kardashians will be next in the perfume and body cleansing business…. Anything for a buck….

    There is a sucker born every minute..

    Thank you

    g.

    Thank you and best regards.

    George Lyons

    Posted by George Lyons | July 7, 2017, 8:36 pm
  10. Beautifully told.

    Posted by Paul Kingsley | July 7, 2017, 8:45 pm
  11. Jen – I’m so sorry for your loss. Every day is precious with your boys. God’s way of making us understand the trials of our patients.

    Posted by Connie Nasello | July 7, 2017, 8:56 pm
  12. You are remembered, Aidan.

    Posted by Alexandra Hanson-Harding | July 7, 2017, 9:18 pm
  13. It’ is so telling of the bleak, agonising horror experienced in your situation, that English doesn’t even have a word to describe a mother who outlives her child(ten). It’s almost as if by not naming it, we can pretend that it isn’t real.

    You are a wonderful woman, and your strength is obvious. You are sharing Aidan’s story, that of a tiny boy who may not have lived long but who, through you, is making an impact in this world.

    Thank you for sharing the painful details of Aidan’s short life with us. Thank you for representing your fellow mothers, and for refusing to hide your grief in the shadows, so that people can carry on pretending that this doesn’t happen.

    For as long as your words here exist, Aidan will always be remembered by everyone touched by his story.

    Posted by Boostick | July 7, 2017, 10:01 pm
  14. I’m so sorry. My son died 2 summers ago when he was 23 months old. People can be so rude and not even realize it. They ask prying questions that aren’t even appropriate in polite conversation. They want to know every detail of it and that’s just wrong. And yes, being part of this awful sorority really sucks!

    Posted by Laura G. | July 8, 2017, 3:35 am
  15. What a moving story. I had 2 miscarriages before having my son so I understand how thoughtless and hurtful people can be. I love my son more than life but I sometimes wonder what his siblings would have been.

    Posted by kathylcsw | July 8, 2017, 5:28 am
  16. I’m so sad for your loss, and so horrified and angry for the way you were treated. It is stories like yours that remind me how important it is to be human first and a doctor second, and that drive me to teach this to my students and residents. I grieve for your loss. I hope you find comfort in knowing that your bravery in sharing can inspire some of us to try to make the next generation better.

    Posted by drgaellon | July 8, 2017, 6:32 am
  17. Even now, when my daughter would be 30 years old, I still stumble when people ask how many children I have. In my heart, I have two beautiful, strong, and exceptional daughters. But only one of them…the 28 year old…walks this earth with me still. That’s a lot to drop on someone in a casual setting. So I say one…and pray that my eldest daughter who waits for me on the other side will forgive me for a lifetime of slights.

    A fellow member sorority that no woman wants to join.

    Posted by Reesa Nicholson | July 8, 2017, 10:39 am
  18. Thank you, Dr. Jen, for sharing this most personal and horrible of experiences. May it help other mothers in the same tragic circumstances.

    Posted by bri65 | July 8, 2017, 4:24 pm
  19. I want to say something erudite and wise. All I have is pain for you and your sisters. I cannot imagine the sense of loss. I wish you peace.

    Posted by Matt | July 8, 2017, 5:42 pm
  20. Beautiful and bittersweet. I can fully picture you running your fingers through their hair, wondering if Aidan’s would be the same or different…and I’m wondering, too. You did an amazing job of sharing your thoughts and emotions. I’m so sorry you have this story to tell💕

    Posted by Jami Carder | July 8, 2017, 6:14 pm
  21. I was a mother of two beautiful and healthy children. We desperately wanted a third. This was is 1976. We had one miscarriage. Then a full term pregnancy which ended in a still born birth. I was never allowed to see that baby. He was whisked out of the delivery room wrapped in what looked like a napkin. A full term 7lb. 14 oz. baby that I never saw, never touched, never held, but never forgot. Emotional recovery was very hard and explaining to my two older children was very hard. Our baby was circumcised even though he was dead, so he could be buried in our cemetery – all which happened with hours of his natural dellivery, because he had to be buried by sundown that day. There is a gravestone on that baby’s grave. He was real. That was 41 years ago and I have never forgotten anything that happened that day, because those memories were the only memories to have made his presence real for me. You love what you have created and what you carried and what you delivered, whether you ever got to touch or see. You never ever forget. And the memories of that day will be with me forever. The memories are my gift.

    Posted by Barb Yablon | July 9, 2017, 8:05 am
  22. I’m so sorry, for you and all your sorority sisters. Peace…

    Posted by Rick | July 9, 2017, 1:23 pm
  23. Thank you. ❤

    Posted by Maggie Metcalf | July 9, 2017, 2:48 pm
  24. I’m sorry for you and your families loss. The hardest thing for you all. My daughter in law carried twins, she knew there was a problem with one early on. We have one amazing grandaughter, but as we keep reminding ourselves, we have two grandchildren.

    Posted by patc44 | July 9, 2017, 11:35 pm
  25. HOlding you in Spirit!

    Posted by marlene | July 10, 2017, 1:37 am
  26. Condolences

    Posted by KristenfromMA | July 10, 2017, 3:04 pm
  27. My condolences for all of you. My own children’s twins only survived long enough to form their little pockets, then were absorbed. (The pockets were visible at the confirmation ultra sounds at 6 weeks), but it was so early and we only knew because it was IVF. Your losses were so much more serious. Mostly, I’m just wistful.
    Mom, however, probably understood very well. Her first was stillborn at 8 months, I was born at 7 months. My sister was baby C after her co-trips were stillborn. They had probably been dead a long time, since she was 9 months and over 7 pounds. Gramma said it took quite a while to convince her my sister was alive. I remember when she miscarried my brother’s co-trips.

    Posted by Demodocus | July 11, 2017, 8:49 am
  28. I’m sorry for your loss. My stillborn baby’s birthday is coming up next month. It wasn’t just you.

    Posted by Rebecca | July 12, 2017, 9:55 am
  29. A very well written and brutally honest account of losing a son, so thank you for sharing. I might, if you don’t mind, be tempted to ask if you had any advice to those who have friends or acquaintances who have suffered this, or intrauterine demise and how you approach them? With as much thoughtfulness and empathy as you can is my takeaway.

    Posted by Chet Morrison | July 14, 2017, 7:49 am
  30. no words, lots of empathy and sympathy.

    Posted by Holly | July 14, 2017, 1:07 pm
  31. Dear Jen,
    I am crying here in front of my screen. My second son was stillborn at 39 weeks. He would have been 12 this year. You never forget, and the pain of treason when you chose not to mention the dead child because you can’t trust yourself to explain without breaking down… People don’t get it. Lucky them.
    I am mother of 4, parent to 3. It’s always good to meet a sister.
    Take care

    Posted by Lucy | July 14, 2017, 10:31 pm
  32. Thinking of you and all three boys.

    Posted by Lisa R. | July 18, 2017, 4:37 pm
  33. Thank you for sharing this. I’m currently awaiting the birth of “Baby A”, knowing that Baby B will be stillborn. You named so many of the questions and fears and emotions I’ve been experiencing in the weeks since we discovered her heart had stopped while his kept beating. Thank you for letting me know I’m not completely alone.

    Posted by Robin | July 26, 2017, 12:06 am
  34. My mom had a stillbirth at 9 months when she was 18 and never was able to carry to term again ( many, many miscarriages). The doctor knew something was wrong the day before and had her come to the hospital that night without telling her why. But, she had a foreboding and stopped by the drugstore to buy a baby brush and comb to reassure herself. Years later, my parents adopted first me and then my sibling. When I was an adult, my mother told me she was galvanized when the state agency told them my birth date. My birthday was her baby’s due date ( the stillbirth happened a week before that).

    Posted by marie | July 27, 2017, 10:26 am
  35. Dr. Gunter, would you please submit this as an opinion piece to the New York Times? It is deserving of a wide readership. Thank you for sharing, and may you and your family be surrounded by light and love.

    Posted by Bett L Butler | July 29, 2017, 11:27 am
  36. I agree with Bett. This is a beautiful, poetically-written, heartbreaking piece. Thank you so much for sharing it. I’m in tears at my screen and so very sorry for your loss.

    Posted by Kim | July 29, 2017, 12:58 pm
  37. Thank you so much for sharing your very personal story, and for putting into words some of what I felt when our son was stillborn at 26 weeks, almost 6 years ago. As I waited in my hospital bed for the induction to progress, I had a strong certain feeling that if I could have swapped my life for his, so that he could have had a chance to live, I would have without a second’s hesitation.

    Today we are the incredibly grateful and fortunate parents to an almost six month old daughter, who is here thanks to the miracle of modern IVF and the kindness and generosity of a gestational carrier. Truly such a gift and miracle she is.

    My sincerest condolences on your loss of Aiden.

    Posted by Mother of 2 Parent of 1 | July 29, 2017, 11:28 pm
  38. *HUGS* thank you for sharing your story and i’m sorry you went through this pain. your deep compassion and willingness to do more than the minimum for your patients is surely related to your own experience. i love that you write with careful well-researched rationality and also a beautiful connection to the human feelings behind a medical issue.

    Posted by Nancy H (@reddressgnome) | August 3, 2017, 8:08 am
  39. Hello Jen thanks for all you do. Neonatologist here, glad that the NICU nurses called your babies triplets. I don’t know how long ago Aidan was born, but they do have something called a Cuddle Cot now. It is basically a bassinet with a cooling system so that families who have lost babies can keep them in the room with them as long as they need or want to. I don’t know if that could mean weeks but it would have given you more time certainly.
    Thanks for advocating for all women, mothers and babies. We need you! Thinking of you.

    Posted by Catherine | August 3, 2017, 8:19 am
  40. When my baby died my husband wanted to go and see her in the morgue. I did not (I can’t explain it. I didn’t need to see her dead, whereas he needed to keep seeing her). However, I went to support him. In her little basket or box – I can’t remember what it looked like – they had put two toys next to her. Toys that were not hers. They were toys that they kept in the morgue for dead babies. Toys for dead babies. I am not a person who ever freaks out, but I freaked out then, insisting that those toys were not hers and they needed to take them away. I couldn’t go back to the morgue again and my husband could not forgive me for refusing to go with him. I’ve never been able to speak about the dead baby toys. Once I tried, but my throat closed up. This is the first time I’ve told anyone about it.

    Posted by Wanda | August 8, 2017, 6:10 am
  41. Thank you for this. Before my parents met, i had two half-sibs. One died in the NICU, the other at the age of 2. I can’t imagine how painful it was for my mother, who, when i asked “Mommy, who’s that other baby in this photo?” always told the truth.

    Posted by The_L1985 | August 11, 2017, 10:22 am
  42. Jen, I am so very sorry for your loss. This is not a club tht anyone should have to join, but unfortunately, there are way too many members. The loss of a child is the worst pain that a parent can bare. 11/1 will be the 5th anniversary of losing our Jesse. And every day feels just like the one before. The holes in our souls and hearts will never be mended. How can they be. We aren’t whole anymore. We are broken.

    Posted by Genny Gochenour | August 16, 2017, 1:57 pm
  43. Life is this big, rocky, complicated story and truth be told, people don’t wanna hear any of it and if they do, it’s just to distract them from their own misery. I love the joyful request for truth, honesty and stories that need to be told, honored and explored. Bring all of it on…

    Posted by wordactress | October 25, 2017, 9:42 pm
  44. I know, I went through IVF after many years of education, becoming a doctor, trying to start a family at 39. I got pregnant the first try on IVF after years of infertiltiy! It was a girl! We were so excited until they didn’t get her out on time. She died in-utero at 42 weeks. “Stillborn” Why did they let me go past-term with an IVF baby at 39 yrs old? I had developed a leak and lost my fluid over several days–I called the doctor and he said it was urine. He could have saved her, could’ve tested me, he insisted upon inducing me 5 days later, I begged for him to do it right away, he didn’t and she died the night before he was to induce her. She was perfect 9 lbs 2 oz, 22 ” my beautiful daughter. Dead. We were sent out the back door of the hospital without a wheelchair the next day! Every staff member asked where my baby was!!!! Why didn’t they know??? They couldn’t wait to get rid of me, their failure. Its been 18 years. I will never be the same. I went on nearly age 41 and had my miracle IVF boy (after being given a 10% chance) who is now a healthy, happy, wonderful 17 yr old. God Bless you Dr. Gunter! I don’t know how many kids to say I have either. Often times I will say “two” and talk about my son, when they ask about my daughter I say “shes not with us, but waiting for me in spirit”. I feel like crap when I say I have one child. Leaving with an urn instead of a child is beyond anything anyone can ever describe. I still talk about her, I don’t care what people think–but I never want to scare a pregnant woman, I just tell them to monitor their baby carefully and go in to the ER if they suspect anything wrong! Mom’s intuition–we often know or suspect something wrong, even though having you first baby is like having an alien in your body.

    Posted by Dr. Jennifer Watters | November 4, 2017, 3:04 pm
  45. Thank you for articulating your pain. My sincere sympathy for the empty place in your life.

    Posted by Del Margolis | November 16, 2017, 7:44 pm
  46. I am mother of three with 2 living as well. My middle son, Ian, was stillborn at 33 weeks. You’ve hit the nail on the head here. Thank you.

    Posted by Stephanie | November 17, 2017, 1:39 am

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