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Tuesday, January 08, 2008

Darci Klein Talks About To Full Term

Darci is holding an online discussion at the Bean Bag Chairs Behind the Couch (one of our two online chat room) Wednesday night at 8 p.m. (American EST). Everyone is welcome to join along and ask questions--even if you haven't yet read her book, To Full Term.

Because she rocks and because she cares, Darci Klein agreed to sit down and talk to us about her book To Full Term and the boatload of research she did on pregnancy loss and preterm labour as a fellow stirrup queen. Her book is sort of like the most detailed Operation Heads Up entry in the world all the while addressing the emotional side of loss and pregnancy after loss.

Darci's first child was born prematurely and spent seven weeks in the NICU. She then had two miscarriages and delivered twins at 20 weeks gestation. When she became pregnant again, she was armed with a ton of research that she completed as a layperson. Through self-assertiveness, good doctors, and a lot of luck, Darci brought her son, who is the focus of this book, to full term.

It is a story with a happy ending. While all the precautions and tests in the world are not enough sometimes, it is the flip side that worries Darci--the lack of knowledge that comes from not running simple tests and blood work until too many pregnancies have been lost. Darci advocates for testing and precautionary measures taken after certain types of pregnancy loss. The main purpose of the book is not only to provide the reader with a breadth of knowledge about loss and preterm labour--the book covers not only the emotional side, but how loss affects marriage, family, and home life--but to give readers enough knowledge to press their doctors for certain tests and procedures.

I sat down...well, okay, this is the online life so I sent Darci some questions and she sent back answers...but can we pretend that we sat down at two barstools in the Virtual Lushary? Here's what Darci had to say about her book and preventing pregnancy loss:

Melissa: At what point did you realize that you should write a book? When did you begin writing it--in your head or on paper? When you were pregnant with Sam? After the delivery?

Darci: I decided to write the book when I realized how many women out there had stories just like mine, and how many others might be spared membership to the club if I shared what I've learned. The book started when Sam had just turned one. I finally had a little bit of spare time, so I signed up for a writing workshop called 'Moms Who Write.' We were 8 suburban Boston moms who met on Saturdays to share anything we'd written- short stories, essays, chapters, whatever. I wrote the first chapter of the book as an assignment. When the rest of the group read my piece, they began sharing their own stories of loss. Some cried. We all spoke supportively to each other. That's when I knew I needed to write the book.

Melissa: Was it difficult for you to write about it, even knowing that the story had a happy ending?

Darci: It was difficult, but ultimately cathartic. There were weeks when I stumbled around muttering to myself. When it was done, my head was quiet.

Melissa: At a few points in the book, you discuss how pregnancy loss can strain a marriage. Was it cathartic or helpful to have your husband read your point-of-view in the book? What advice could you give others going through pregnancy loss right now in regards to protecting a marriage and getting support from a spouse?

Darci: Hmmm....my husband wouldn't read it for some time. When he did, I only had the first half written- when things were the most tense between us. That was really no place to stop reading. He was clearly upset. But you know what? He was great about it. He said he had a much better understanding of the cumulative effect of all of this- years of loss and recovery, when I often felt isolated in my grief, and shaky about my confidence in myself. He was incredibly supportive, and that's really all I ever needed from him- to know he really understood. So yes, it was cathartic for both of us to read.

In terms of advice when struggling through infertility or pregnancy loss, it's critical that couples understand how the experience has affected them and their partner. Don't assume you know what's in your partner's head- or even your own without a truthful self-evaluation. And please don't just shrug it off and go back to your normal routine. You'll only temporarily push down the grief and disappointment and anguish of this, forcing it to seep out like little doses of poison.

See a therapist, or a rabbi or clergyman. Someone who can help you both sort through this. Tell each other what you're experiencing, and realize that there's no one right way to respond to loss. In my case, my husband didn't really show his grief for long- and I assumed it wasn't there. Big mistake. I should have asked, not judged. We could have avoided a lot of resentment.

Melissa: What advice can you give women about explaining pregnancy loss to children? How did you broach the topic with your daughter and what did you learn from that experience?

Darci: If they're old enough to realize you were pregnant, you need to tell them about the loss in age appropriate terms, encourage them to talk about it with you, and address their fears.

Maddie was four when we lost the twins. I was twenty weeks, and we had told told her about them. It was so painful that I considered saying nothing to her, but a therapist told me that at four, she knew there was a loss, and if I didn't give her an explanation for it, she'd create one in her own mind- possibly a scary, scarring one. We did tell her about the loss, and she cried with an anguish I never knew possible for a child to feel. She then continued to ask me, almost daily for months, 'why did the babies die.' After a year had passed, she asked less frequently. It was hard, but this is what she needed to work through it.

Melissa:
You focus a lot on your particular thrombophilia--Leiden V. Was the tight focus an editorial decision or simply a case of "writing what you know" (since it was, after all, your story)? Does a lot of the same information apply to other inherited thrombophilia?

Darci:
I focused on Factor V Leiden because it was relevant to me, and what I know best. Also, it affects so many women- about 6% of the population- and the evidence linking Factor V Leiden to recurrent loss seems exceptionally strong. To date, seven inherited thrombophilias- gene mutations thought to cause abnormal blood clotting- have been identified. Studies have shown that women who carry these mutations have more losses that women who don't carry them, but the strength of the association varies by mutation. In the case of Factor V Leiden, every study I've looked at consistently shows that women with this specific mutation are more likely to have losses. With other mutations, the data seems less consistent. Still, some doctors will treat when any of these mutations are present, other treat only specific mutations, and some doctors will treat none of them. These decisions usually occur with no input from the women who have to live the outcomes of these medical decisions. I think that should change. Women should have a voice in their own health care.

And by the way, these mutations can be diagnosed with a blood test. Nothing major. And current medical guidelines do not require doctors to treat any of these mutations.
Melissa: There are a bunch of bloggers currently on bedrest due to preterm labour. What can others do to support from afar? What advice can you give them about getting through those long, lonely, frustrating weeks?

Darci: I've mixed emotions about that. I'm sorry they're on bedrest, but hey! they have possibility! In terms of support, ask them what would help. Keep in mind that bedrest means you can't do anything. No laundry, no cooking, no going out- except for those raucous medical visits. Bedrest is lonely and frustrating, and made me feel totally helpless. The biggest help for me was my friend Mary who came for a visit (and smuggled in real coffee) once a week. I also appreciated friends who called every week to chat, sent their favorite book, or sent food/yummies. Neighbors also organized meals for us- BIG yeah!- and often called to include Maddie on their family outings.

One last note...I think this specific infertility community is incredible. Let's just say it...this experience absolutely sucks. I spent decades trying to preserve my barren state, only to bag the daily pills and discover that this wasn't so easy after all. You need a great deal of information and humor to get through this intact. Kudos to each of you for mixing resources with attitude to keep women informed and sane.

Darci is a wealth of information, empathy, and advice. Come pick her brain at the Bean Bag Chairs Behind the Couch on Wednesday, January 9th at 8 p.m. Everyone is welcome to join along--whether you've experienced loss, are currently pregnant, or simply want to know how to be a good friend when the worst happens.

2 comments:

Barb said...

What a wonderful interview with great responses!!! I fully agree with you Darci. Thanks for putting this out there!

nutmeg96 said...

"I spent decades trying to preserve my barren state, only to bag the daily pills and discover that this wasn't so easy after all."

Wow, that hits the nail on the head. Great post/interview.