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You've probably explored many, if not all, of these options already. I'd recommend reading ahead just the way I recommend planning ahead. Remember, the more information you can get ahead of time, the less likely you are to be surprised.

Other Moms

Other mothers who have experienced or are experiencing the same kind of diagnosis will be your best resource. If you want to be put in contact with other moms, please email me at and I'll try to find you a pen-pal. I only swap email addresses with full consent of both parties.


A side note: almost all the books about birth defects will assume you instantly terminated the pregnancy, or are at the very least in the car driving to a facility which will terminate your pregnancy. They have titles like A Time To Decide and although they give lip service to carrying the baby to term, it's either patronizing or outright hostile. The book the genetic counselor gave us (and she warned us of this) featured about 25 testimonials from people who had aborted their babies for various reasons, with an assortment of stories for each different way you can end a pregnancy. That same book gave only one from a couple who had carried to term. I find that disparity disgusting. If women are supposed to choose, then let them make informed choices.

A second side note: the majority of these books are written toward the mother. Certainly there's pretension of appeal to literate fathers, but the majority of times the authors will refer to "you and your husband" and will also include a couple of pages about "how dads grieve".

I've provided links to's pages for these books, but the majority of them are better ordered from Compassion Books or from SHARE. I like SHARE best, and they didn't pay me to say that. If you dislike ordering online, SHARE can be contacted at (800) 821-2893 or by writing The National SHARE Office, 300 Capitol Drive, St. Charles MO 63301-2893. If you order the SHARE magazine, make sure they don't charge shipping for that when they ship your books, as they figure out the shipping charges based on the total cost of the order.

When A Baby Dies, Rana Limbo & Sara Wheeler. I borrowed this book from my midwives' lending library two days after the diagnosis, and I devoured it. This is an excellent book. In many respects, I modelled this website after I remembered of that book's structure. They discuss everything from how to hold and photograph your dead baby (and why it's okay to) to the swirl of terrible and wrenching emotions, to funeral planning, to how your doctor ought to treat you, and so on. This book, like most infant loss books, assumes your baby is already dead, but the vast majority of the emotions they describe actually occurred in me on the heels of the diagnosis shock. I found it very pertinent.

When Hello Means Goodbye, Pat Schwiebert & Paul Kirk. Perinatal Loss, or available through the SHARE print catalog. About $5. This is a guide for parents whose baby has already died, but it's very good, very thorough. It includes the analysis of two directors of a perinatal loss program, stories of bereaved parents, and some parents' poetry. It's very gentle, and it urges you to really parent your baby for as long as possible. I read it twice: once in March after the diagnosis, and once in July after Emily died. Both times, I cried like crazy, but it was a good cry. Highly recommended book.

Still To Be Born, Pat Schwiebert & Paul Kirk. Availability and pricing as above. This is a guide for bereaved parents who may have been bereaved already for some time, and are making decisions about possible children in the future. I recommend reading this a few months prior to any plans for conception--so if you're planning on conceiving in your first postpartum cycle, read this while you're pregnant. They raise many pertinent issues and discuss why a subsequent pregnancy won't be a picnic. Like the previous volume, this book contains recollections and poetry from bereaved parents.

Both these books can be ordered from:
Perinatal Loss
2116 NE 18th Avenue
Portland, OR 97212
(503) 284-7426

The Birth Book, William and Martha Sears. Little, Brown & Co. About $12. It seems silly to recommend a non-bereavement book here, but your baby has to be born. Many women feel that their babies' systems will be the least compromised by a non-medicated birth, which might theoretically make the difference between a live birth and a still birth. An unmedicated mother is also more likely to be clear-headed and able to remember more details. I credit this book with my being able to have a non-medicated delivery for Emily. The Sears are very partial to non-intervention unless medically necessary, so they give quite a bit of information which can help you make the best choices for yourself and your baby at the time of the birth.

Empty Arms, Sherokee Isle. Wintergreen Press. The author is one of the perinatal-loss gurus. Herself a bereaved mother three times, she talks you through many of the emotional aspects of what you can be feeling in the early months. She has some good insights.

When A Baby Dies, Nancy Kohner and Alix Henley. You'll notice that many of the infant-loss titles repeat themselves. There are at least four books called "Pregnancy After A Loss," for example. At any rate, this is another broad-survey book like the first When A Baby Dies, only it's more British in flavour. While I found it helpful, it wasn't as much as the first one I read.

Sometimes Miracles Hide, Bruce Carroll. Howard Publishing. $15. This book came with the CD of Bruce Carroll's song of the same title. I haven't had the courage to put it in the CD player yet, but I'd heard it on the radio years ago. The song was about a couple who had a baby with Down's syndrome. They describe the baby as a hidden miracle, imperfections and all. This book compiles the many letters Carroll received in response to the song. Lots of short, riveting testimonials.

Bittersweet...hellogoodbye, Sister Jane Marie Lamb. This is a resource for funeral planning, available through SHARE. I have not used it, but I've heard it highly recommended.

Waiting With Gabriel: A Story of Cherishing A Baby's Brief Life, by Amy Kuebelbeck. Loyola Press. The story of a family coping with a diagnosis of Hypoplastic Left Heart Syndrome. You can read a review of the book.

Books For Children

Nana Upstairs, Nana Downstairs, Tomie DePaola. A gentle story to introduce the reality of death to children.

Lifetimes. Everything has a birth and death, and this book explains that living is what happens in between.

Sadie and the Snowman. When Sadie's snowman starts to melt, she finds a way to keep a part of him with her always.

Support Groups

When you contact SHARE, they will send you a list of support groups in your area. There is something comforting about meeting other bereaved parents. As someone on one of my internet groups said, there's nothing like being hugged by another bereaved mother. It's a hug of total understanding. Ask your local hospitals, your OB office, or your local churches who sponsors one. Frequently these groups offer newsletters, so even if you don't feel up to seeing folks face-to-face, you can get support that way. Many groups will allow you to sit and listen if you don't feel you're able to share your story yet. If you break down crying, I assure you that won't be the first time it's happened in the group. Ask if you can attend meetings in advance of your baby's death, just to learn more about what to expect.

My experience: one of the local infant-loss groups (not one recommended by SHARE) sent me a few newsletters which I found profoundly offensive. I angsted about it for a while before writing them and requesting to be removed from their list. It's okay if you decide a certain group is providing support in a manner you find counterproductive. If they genuinely want you to feel better, they'll understand your departure; and if they don't, then you didn't want to be there anyhow.

Web Sites

These are where you'll find personal stories and photos of babies with your baby's defect. Sometimes the personal web pages aren't very accurate when it comes to factual content, though, so make sure you double-check with bonafide medical sites as well.

A word of caution: there are sites online which publish photos of the most grotesquely deformed babies they can find. I don't know why some people think that's entertainment, other than they're pitiful people themselves. The first photo I saw of an anencephalic came from one of these. After I had seen photos of loved babies rather than clinical photos, I was able to return to that site and take a better look, and I realized that baby had far more problems than just the anencephaly. The search engines often turn up those sites with titles like "Anencephaly Photo," so if your search turns up a site that's just photos and no text, avoid it. It's probably just entertainment for fourth-graders (who also think boogers are cool.)

One of the best ways I found of locating good anencephaly sites was through links from other good pages. Other parents are unlikely to steer you wrong. If you can find a web ring dealing with your baby's problem, that may be a good place to start.

Many of the memorial pages I've seen have been dedicated to induced preterm babies. If you think that would get you angry, perhaps finding a pro-life infant-loss webring might serve you better, at least for now.

Internet Clubs, Mailing Lists

If you're looking for an internet club, you may want to try one on Yahoo. It's relatively easy to become a Yahoo member, and it's free. Mailing lists are similar, only the correspondence arrives in your mailbox, and you don't need to bring up your browser. These groups often become quite close-knit, so don't be surprised if after your baby's death, you get condolence cards from addresses you don't recognize at all. Particularly if your baby's condition is rare, the internet may be the only way to meet others who have suffered the same.