Stillborn, but Still Born: Our Story

At 2:07 a.m. on Aug. 21, 2015, our son, Luke Wyatt, was stillborn at 37 weeks gestational age. Less than 24 hours earlier, at the doctor’s office, when I was trying to comprehend why the techs couldn’t pick up a heartbeat on the monitors, or what the doctor meant when she looked at the ultrasound and said the heart wasn’t beating, I heard the words I will never forget, the words I never thought I would hear: “I’m afraid it means that the baby had died.”

We were so close to the finish line. We should have been preparing to bring our son home from the hospital. Putting the last touches on his nursery. Instead, we were planning his funeral, planning for him to come home in a very different way, making all sorts of choices a parent should never have to make.

It had been a seemingly “normal” pregnancy, and the doctors could find no obvious cause for his “fetal demise” (one of the coldest phrases in medical terminology). The perinatal specialist who reviewed our ultrasound said ours is the most difficult kind of consult he has to make. No pre-eclampsia. No gestational diabetes. No drugs, no alcohol, no smoking. Measuring normal—large, even—at his 32-week ultrasound, with no obvious defects. Luke is our second child. Our first, Zoe, was born in 2013; we didn’t have any issues with her pregnancy either and she’s a “normal” kid.

About two months after Luke’s death, we received the results of the autopsy: massive perivillous fibrin deposition/chronic histiocitic intervillositis. Basically, for some reason not understood by science, the placenta didn’t perform its normal job of making the baby invisible to my immune system, which attacked, sending immune cells into the villi, or “fingers,” of the placenta. Under attack, the villi were unable to perform their function of preventing clots from forming in the placenta, and clotting material, or fibrin, built up to such a degree around the fingers, in the intervillous space, that the placenta essentially died. We later met with a placental pathologist to learn more about the condition and treatment; my writeup of his excellent descriptions and explanations is here.

The disorder has a high risk of recurrence in future pregnancies and can also get worse with each one. The spectrum of conditions to which the disorder is related are thought to be rare and as such are poorly understood. There are no consistent treatment protocols, and the efficacy of treatment is not well documented.

In March 2017, after a long and stressful but otherwise uneventful pregnancy (and following a miscarriage in April 2016 that was determined to be unrelated to MPFD), I gave birth to our beautiful second son, Wyatt Roland. You can read about our treatment plan here.

If you found my blog because you, too, suffer from this “monster” of a disease, as a fellow sufferer calls it, please feel free to reach out to me at lukesmom0821@gmail.com. I don’t promise to have a lot of answers, but I have done a lot of reading on the subject and can provide some—and also hopefully steer you in the right direction for more. Most of the information I have found online about MPFD/CHI/maternal floor infarction came from technical journals and is aimed at medical professionals with PhDs. I hope that this blog can provide a layperson-focused alternative to help the actual families who have been afflicted with this curse.

Zack and I are private people. But I decided to share parts of our journey to help family and friends understand what we’re going through, and in hopes of possibly helping others on this same hellish path, this nightmare world I call Planet I Delivered a Dead Baby. If you live on that planet, I am so, so sorry. This planet sucks. It sucks the joy out of just about everything. Just when you think you’re going to make it out alive, it sucks you back in. We’re stuck here. There’s no getting off at the next stop. So we might as well make the most of it. Take my hand, and we can make the journey together.

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7 thoughts on “Stillborn, but Still Born: Our Story

  1. I am so so so sorry to hear about your loss. We lost our son at 14 weeks on May 14 of this year. This planet sucks. I started writing to just try to get over the void every day. Thanks for giving my current space a name.

    Liked by 1 person

  2. I am so so sorry for the loss of Luke, it breaks my heart that anyone has to feel this terrible loss. Although our circumstances are different, I lost my son William in October 2014 when he was born prematurely at 27 weeks for no obvious reason. He died 8 days later. I’m still trying to learn how you’re meant to live with this loss. I wish you and your family much love.

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    • Cath – I’m so sorry about William; I just checked out your blog and it broke my heart. I’m trying to figure that out too; not sure if I’m getting anywhere. Thanks for reaching out – we baby loss moms are a small community but at least we have each other to lean on.

      Liked by 1 person

      • Thank you so much for taking the time to read it, as you can tell I’m very new to blogging but I’m already finding having somewhere just to be completely honest really helpful. Knowing others are going through the same thing is comforting and saddening in equal measure – what shame we have to ‘meet’ like this but thank you for being there. X

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  3. I am so deeply sorry for the loss of your beautiful baby boy Luke, I can’t begin to imagine what you went through and are still going through. I also have MPFD, it went undiagnosed until my placenta was sent away for testing, my little boy Joshua was born at full term 3 days late and was ok thankfully, he has hypoplastic left toes I’m assuming this is to do with the condition but that’s a drop in the ocean compared to what could have happened.

    If you or any other Mothers would like ti ask any questions or even have a chat and share infro awareness please dont hesitate to contact me..

    Shanellmcleod@hotmail.co.uk or add me on Facebook my user name is ‘shanellmcleod’

    Xxx

    Liked by 1 person

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