Grey Areas

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Part of the shame (for me, at least) of TFMR is that my daughter’s diagnosis wasn’t terminal – she could easily live with modern medical intervention. Granted, she could have easily died from one of the numerous surgeries she would have needed, but she wasn’t destined to die minutes after birth.

Some NTD’s are terminal. Spina bifida isn’t. Myelomeningocele isn’t.

I remember when I first started researching myelomeningocele and termination for medical reasons, and I was so angry – if I had to make this decision, why couldn’t she have had a terminal diagnosis to make things just a smidgen easier? Please don’t misunderstand me – I don’t think that TFMR with a fatal dx is easy – I just think it’s easier for observers to focus on the prevention aspect. With a fatal dx, it’s not a matter of if, it’s a matter of when.

I see when people discuss termination for trisomy 21 (DS), they are quick to elaborate all of the secondary complications that were present and are likely to show up. I do the same.

It’s one thing to gamble with my own life, but I was gambling with my daughter’s life.

It’s also one thing for the state of Texas to say “It’s morally acceptable for you to terminate your pregnancy after 20 week as long as you have a fatal dx, but we don’t recognize pain, quality of life, or the logical consequences of bringing an unhealthy baby to term.”

I’ve heard many women say that they felt they didn’t have a choice when it came to TFMR, but I think for me, the scary thing is that I did have a choice. In theory, I could have selfishly CTT, but I chose not to. I wonder if women say that to distance themselves from “elective” abortion. I don’t know. I wonder if I would have felt differently if I had received a fatal dx.

I’m just feeling a little sorry for myself today. I’m going a little crazy – my period was really weird – light and didn’t last very long, so I’ve tricked myself into thinking that I’m pregnant.

I know.

Pregnant and taking Clomid. Don’t bother telling me not to Google it – I already have. It’s so bad that I took a pregnancy test today. I’m CD 14 for crying out loud! It’s negative, of course, but then the doubts come in. What if all the pregnancy tests are defective? I went out last week with a friend who IS pregnant, and I seriously considered asking her to POAS to calibrate the test for me.

What

The

Hell

?

I know. I know. It’s craziness. But unless you’ve been this desperate, don’t judge.

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5 thoughts on “Grey Areas

  1. I won’t tell you not to test anymore, since I know it’s too late for that. But seriously, consider not doing it at all anymore. Saved me a million cries. I hear you on the termination front. That grey area is the problem. It’s only grey to you. To everyone else, it’s black or white. They don’t understand because they haven’t been there.

  2. The grey are IS a hard area.

    One thing that I can think of that is worse than a grey or black area is an unknown. The women who have such rare poor prenatal diagnoses or the unidentified fetal development problems that don’t have a name — this has to be so lonely and worse if you can compare diagnoses and loss. These women don’t have many resources on line, they cannot tell others that their baby had XYZ disorder or if there’s a name, there’s only four cases in the world. I cannot imagine how isolating that would be.

    And then there would be the doubters … the people that said to those women, “What if the diagnosis wasn’t that bad?” or “What if the testing was wrong and your baby really is going to be OK?”

    At least with a grey diagnosis there is a definitive diagnosis and community in knowing that you aren’t alone with experiencing this.

    However, I get it that with a grey diagnosis you don’t feel like you can be open when discussing the diagnosis because of the perceived images of people with that diagnosis since many people do live with non-fatal NTDs. Of course Ds is another of these grey diagnoses.

    But it always comes down to what was the best decision for your little one, you, and your family based on individual values, circumstances and resources — not on what others who won’t be raising a child facing multiple surgeries and quality of life issues thinks.

    • That’s one thing I try to explain to people when i discuss TFMR – that I was one of the lucky ones! That I was able to get a diagnosis THAT DAY and not have to wait weeks (or longer) to get a diagnosis (if any can be given).

      People call what we did a heartbreaking choice, but I still don’t feel like I had much of a choice: I wasn’t going to let my daughter suffer.

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