Parallels between the babyloss and Down Syndrome Communities

This was her first visit in the office since we converted to electronic medical records. Even though I always review a patients medical history when they come in, I pay extra attention when it’s someone’s first visit since the transition. As I went over her family history I saw listed in the “son- Down Syndrome.” I don’t think I knew this about her. Perhaps I did but it hadn’t meant anything particularly special at the time.

She admitted it had been a long time since she had been in for an exam- over two years and I gave my typical reassurance- “it’s ok, you’re hear now. We’ll get you all caught up.” Before we started the exam, she asked me “what’s new with you?”

“A lot actually…”

“Did I hear you had a baby?”

“Yes. And actually she had Down Syndrome.” I saw her face perk up a bit. “but she died shortly after birth.”

“Oh, I’m so sorry, “ she said. Her words were simple and genuine. I went on to tell her about how we knew our child would have Down Syndrome and we chose to continue the pregnancy. I told her about the low fluid and what it meant for the baby’s kidneys and lungs, how the prognosis was so uncertain.

“We had no idea if she would live or die…”

“Oh my, you have been through so much! What a year that must have been!” I really appreciated her words, because I felt like I had been through so much- the uncertainty, the hope, the letdown and the grief that followed. Sometimes I wonder how I got through it all.

As I went through her exam, we continued to talk. I asked her about her son and learned he was 16 years old and low functioning- non-verbal, but a very sweet boy. She told me stories of their trip to Disney World and his school experience. She told me about her pregnancy with him and the surprise birth diagnosis.

“It’s such a treat to talk about him. Usually when people hear he has Down Syndrome, they think of it as a bad thing and avoid the topic.”

I marveled at the parallel. We continued to talk about the similarities between raising a child with Down Syndrome and being a babyloss mom. The avoidance of the topic, the unhelpful platitudes we receive, the entrance into a very exclusive club you never wanted to be in.   The visit went well beyond the 15 minute slot allotted, but it was worth it. She needed it- and so did I.

At the end of the visit, she asked after another midwife who used to work in the practice. I told her about the new job she had, how well she’s doing and how we still sometimes see each other. She had seen that midwife for years before I inherited her as a patient when my colleague left. “I used to look forward to coming for my annuals, because enjoyed the time I spent with my old midwife so much,” she told me. “But now I get to look forward to seeing you.”

Have you found someone in a different community outside the babyloss world who has similar struggles?

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8 thoughts on “Parallels between the babyloss and Down Syndrome Communities

  1. What a lovely conversation you and the patient had. It sounds like it had a lot of value to you both. I’ve also found a bond with people outside of the babyloss community who have had similar struggles, like you say the platitudes, avoiding the subject, and all the rest of it. It’s good to have that bond, that resonance, but I also think it’s sad that it too often can take similar experiences to get that genuine empathy we all need xx

    • yes- it was totally good for both of us. I totally had that moment of “she kinda understands” when she told me it was nice to talk about her son, how she rarely gets a chance to do that. we know that well, dont we?

  2. What a lovely interaction! It sounds like it was a very worthwhile conversation for both of you.
    I think that anyone who has gone through a tremendous struggle can relate to someone else going through a struggle, even if they are not the same type of struggle. We become united through the new way we thinking and see the world.

    • yes- there are any people who struggles so different from mine, but I can see those struggles and sort of “get it.” SOmetimes I find myself comparing, but on my best days I find myself being compassionate.

  3. AWW so happy for the both of you to be able to have a conversation openly. I once talked to my good friend about my struggles and found parallels between my experience and her experience of losing her mother. So we were in the end both felt empathy towards each other.

    • I found that too- a work colleague took a minute and vented on how fair it was to lose her mother at a young age. It felt good for her to be able to vent about the unfairness of life and good for me to be able to relate and validate.

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