Why Not Palliative Care for Grace Instead?

To discuss this topic, I'm going to bring up a story.

I was notified of an update on my Facebook page from Judie Brown, who wrote this note. Judie includes:

"Utz complains that, because of a Missouri state law, her insurance did not cover the cost of aborting her daughter. She writes that getting the abortion can be costly since Planned Parenthood does not offer abortion when the health of the baby is the reason for the abortion. In addition, she complains that, had she waited two days longer for her abortion, she would have had to go out of state for it.

In other words, Utz is using the very sad abortion-death of her daughter to sound the alarm and warn readers that the act of abortion must be protected by law. Sadly, she does not recognize that her preborn daughter was worth every ounce of suffering she and her husband might experience simply because they loved her unconditionally and looked forward to seeing her, if only briefly."

First, Judie, thank you for taking the time to write your note. You noted that you feel so strongly about it it's hard for you to not come off as harsh or cruel, and I thank you for your effort – you are obviously coming from a place of strong moral objection to abortion (I assume for any reason) and I respect your position, and know you're far from alone in it.

Before I share my perspective, I do want to clarify two things –

  • You misunderstood the Planned Parenthood coverage. I did not complain that Planned Parenthood doesn't offer abortion when the health of the baby is reason for the abortion. They indeed do. 
  • You cite a page that says babies feel pain at 22 weeks (20 plus the two weeks before fertilization), which Grace wasn't yet. There is a lot of research that supports that fetuses don't feel pain until the third trimester (28 weeks). This is the information every single one of our medical professionals independently gave us; it is not an isolated number.  However, even if she'd been later when we discovered this, we'd still have wanted to explore the option because the pain would have been less than she'd have felt at full term, and she wouldn't have just undergone the trauma of delivery.

Now for my perspective: 

Judie, you say "Sadly, she does not recognize that her preborn daughter was worth every ounce of suffering she and her husband might experience simply because they loved her unconditionally and looked forward to seeing her, if only briefly." While I respect that you feel this way, your feelings don't make them fact.

I can assure you that my husband and I loved Grace immensely. When we learned about her diagnosis and how little time we had to make a decision, we were shellshocked. We considered continuing to carry her, and also delivering her then so we could see and hold her. But we didn't pursue any of these options precisely because Grace was 100% in mind:

We were told by now five independent medical professionals that Grace would have 100% not lived, and there was a good chance she would have been stillborn. So her options for demise were:

  1. Have the pressure and weight of my body slowly crush her to death, and be stillborn.
  2. Put her through the trauma of delivery, to then discover with full consciousness and a fully developed nervous system, that she couldn't breathe and didn't have functioning kidneys, and be put immediately on life support or allowed to pass away. 
  3. Have us terminate the pregnancy via cutting her umbilical cord at 21 weeks 5 days in the warmth and comfort of my womb, before her nervous system and consciousness had developed further. 

All of these options sounded terrible because they were. But hating the options didn't allow us to not make a choice. So we made the best choice we could with our daughter, each other and our Higher Power in mind. We believed that her passing in the warmth and love of my body was the best route forward. People debate whether having her umbilical cord cut before she passed was humane, but I feel strongly it was the MOST humane out of terrible options. You may not feel that way, and I respect that, but it doesn't make it less true from our perspective, and I hope you can consider ours.

A lot of your post is about the options for palliative care for newborns that have disease. You noted that "At Alexandra’s House, Grace and her parents might have experienced something quite different and may have felt a sense of closure and peace if Grace had died a natural death." I have not done extensive research on Alexandra's House, but I'm including a link here for people who feel the way you do. I want them to have a choice in handling this terrible situation in the way that feels best to them as much as I want for us to be able to make the choice that's best for us. 

There is one final misconception I want to clear up: my husband and I feel a sense of closure and peace – you are incorrect to assume we do not. We had terrible options presented to us about our incredibly loved baby girl. But we did our very best with the information we had and feel 100% at peace with the decision we made. Sad about Grace's fatal illness and the options present to us, and never getting to watch her grow up? Absolutely. Upset that the legal process made it unnecessarily cruel? Yes. Comforted that Grace suffered as little as possible because of the choice we made? 100%.

It may not have been the choice you'd have made, and I respect that, and want to include Alexandra's House for people like you who are faced with such terrible options and wouldn't make the choice we did. But it's incorrect and inappropriate to assign how you'd feel about it to how we feel about it and assume your opinion is fact. It simply isn't. 


Have any questions? Comments? Want to continue discussing? Please comment, and remember, only kind, respectful, comments will be welcomed. Let's be curious instead of judgmental. 

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