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 [email protected]
and I'll try to find you a pen-pal. I only swap email addresses
with full consent of both parties.
Books
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 Amazon.com'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.
