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INFANT
LOSS/MISCARRIAGE SITES
- A
Mother's Grief. A place for grieving mothers to come together
and talk about the loss of their baby. This site offers various means
of support. We have a Chat Room, Message Board, Memorial Wall, Poems
& Quotes, Keepsake Store, Our Story page and much more. This is
a huge website with great resources!
- A
Trisomy 18 Journey, Abigail Grace Wilsford. Story of a baby
diagnosed with Trisomy 18 before birth who was carried to term and lived
5 days. Includes grief resources and memorial ideas.
- Across
the Miles: Women's Journeys through miscarriage, stillbirth,
and infant loss. This is a developing site dedicated to the stories
of women who have suffered miscarriage, stillbirth and infant loss.
Add your own story!
- Always
Loved ~ Never Forgotten ~ Forever Missed~. Is actually a "Yahoo
Group" that has recently added a newsletter For Grieving Parents.The
Newsletters come out every Sunday Evening with Greiving or Memorial
sites/links, Poems, and anything else that the members and visitors
send in. The home website for the group is http://home.comcast.net/~alnf1
.
- American
SIDS Institute includes information on research, a memory page,
links to other SIDS sites and bereavement services.
- Angel
Babies - Forever Loved is a site that includes several items
of interest including several articles of interest to parents who are
grieving. Includes a memorial page.
- Angel
Babies in Heaven, Pregnancy Loss Memorials Offers hand painted
stepping stone baby loss memorials as special
keepsakes for bereaving parents. Site also offers parental support and
their own personal story of their stillborn daughter.
- Angel
Teddy Bears Foundation. the Foundation's purpose is to deliver
teddy bears to hospitals which are in turn given to parents of stillborn
children, miscarriages and neonatal loss. Along with these teddy bears
is is a card containing a sympathy
message and the website address.
- Angel
Whispers. Angel Whispers offers a variety of services for coping
with baby loss such as E-mail Support, Monthly Support Group Meeting,
Subsequent Pregnancy Support Group Meeting, a Quarterly Newsletter and
a Resource Library among other things.
- A
Heartbreaking Choice. For parents who have interrupted a wanted
pregnancy following poor prenatal diagnosis. Includes resource list,
remembrance garden, poetry, other educational information. You can also
register to be included in their chatroom. Also includes over 40 local
support groups for parents who have interrupted a pregnancy.
- Angel
Whispers. A non-profit group for families who have lost a baby
during pregnancy or shortly after birth, as well as those who are expecting
again. We provide email support, a quarterly e-newsletter, care
packages, birth certificates and support groups.
- Arizona
Sudden Infant Death Foundation has lots of information for
anyone seeking more information on SIDS. Includes resources for both
families and professionals, an on-line version of their newsletter,
a Memorial Page, and merchandise. A Spanish version of the site is also
available under "additional information."
- Baby
Angel Pics. The BabyAngelPics Project has been created to donate
photo retouching resources to the parents and families of a stillborn
baby. Through this free service, our skilled digital artists work with
a digital copy of your original, eliminating medical equipment, removing
unsightly marks and even replacing the background if desired. Mothers
can scan their photos and upload them to us or have a participating
retail partner scan them and upload them to us.
- Babyloss
Information, support, forums, stories and dedications for women and
their partners who have experienced the devastating loss of a baby.
- Bears
for Bereaved Mommies. In addition to the valuable information
and resources, find out about how you can participate in the bears for
mommies program in your area as well as the "ribbon campaign".
- Bereaved
Families of Ontario updated regularly, and includes over 300
links to other web sites on the topic of dealing with all types of grief.
And, it's frequently updated!
- Bereaved
Parents of the USA lists chapter locations and info, information
for the newly bereaved, and now has all of their newsletters online
back to the fall of 1999.
- Bonnie
Babes Foundation: A nonprofit organization in Australia providing
counseling services and training.
- Born
Angels is a site for grieving parents who have lost a baby at
any stage of their pregnancy; ectopic pregnancy, miscarriage, or stillbirth...and
for their family and friends.
- Born
Still offers email support, poetry , links, and free greeting
cards.
- Born
Too Soon is a marvelous site especially for women who have lost
a baby during pregnancy or birth at any time of their pregnancy. The
site discusses in depth the emotional side of pregnancy loss and there
are special pages for still birth, ending a pregnancy due to abnormalities,
children and giref and a page for relatives/friends on helping someone
with pregnancy loss. Also offers free remembrance certificates for anyone
who contacts my site and pages for dedications.
- Branden's
Page. A lovely memorial site by the parents of Branden Lee who
was stillborn on July 9, 1996 at 33 weeks gestation.
-
Carrying To Term Pages is an online how-to guide for carrying
a pregnancy to term after diagnosis of a condition fatal to the baby.
The site includes birth plans for terminally ill babies, memorial ideas,
funeral planning, and emotional support.
- The
Center for Infant & Child Loss works with Maryland families
and communities facing the sudden unexpected death of their infant or
child as they learn to live with their loss. The Center is committed
to increasing the understanding of Sudden Infant Death Syndrome (SIDS)
and other child deaths, risk reduction practices, grief, and compassionate
intervention.
- Center
for Loss in Multiple Births (CLIMB) now has a web page introducing
their services. You can e-mail them to receive a free copy of their
newsletter.
- Centering
Corporation is one of the largest distributors of all grief
materials, including infant loss. They now offer their catalog of materials
online.
- Children
Are A Gift Foundation. This wonderful website tells you about
the work of this foundation in Texas USA. If nothing else, take a virtual
photo tour of the fantastic and impressive Children's Park that they
developed to remember infants. We are most impressed!
- Compassion
Books, 7036 State Hwy. 80 South, Burnsville, NC 28714; 828-675-5909;
toll free 1-800-970-4220. Over 400 resources to help children and adults
through serious illness, death, loss, grief and bereavement. Print catalog
available by request.
- Compassionate
Friends provides locations of all of their 575 chapters in the
U.S. and links to at least 29 different chapter homepages.
- Coping
with the Emotional Aspects of Pregnancy Loss An excellent primary
guide for parents who have recently experienced the death of a child
through miscarriage, stillbirth or other perinatal loss.
- Ectopic
Pregnancy A compassionate information resource compiling facts,
stories, poetry and other items of interest to those who have experienced
an ectopic pregnancy.
- Elizabeth
A. Pector, M.D. has set up a page of poetry and prose focusing
on multiple birth loss. From here you can also connect to her multiple
birth loss resources page.
- Glory
Babies... of the Children are a Gift Foundation offers personal
stories, articles, a newletter, prayers, poems, memorials, resources
& links.
- HAND
(Helping After Neontal Death) Founded in 1981 to help parents,
their families and their healthcare providers cope with the loss of
a baby before, during, or after birth. It is aa resource network of
parents, professionals, and supportive volunteers that offers a variety
of services throughout Northern California and the Central Valley.
- H.A.N.D.
(Houston's Aid in Neonatal Death). A parent run support group
in the greater Houston area serving the needs of parents experiencing
infant or pregnancy loss through miscarriage, stillbirth, or neonatal
death anytime through early infancy. Writings, resources, links and
information on support meetings in the Houstan area.
- HAND
of the Peninsula. This web site by a local chapter of HAND (Helping
After Neonatal Death) offers information on their resources, their programs,
their support groups. Includes "telephone crisis" support.
- Hannah's
Prayer, Christian emphasis, including infertility or the loss
of a child at any time from conception through early infancy. Info on
their network of local care/support chapters through the US, "live
chat" room, and a penpal connection area. They also have a newsletter,
Hannah To Hannah.
- Haven
of Hope and Healing, Inc. is a nonprofit, organization committed
to providing mental, emotional, spiritual, and educational support to
those who have experienced the loss of a baby through miscarriage, stillbirth
or infant death. We are a nondenominational organization that helps
parents, their families and their healthcare providers cope with the
loss of a baby before, during, or after birth.
- H.E.A.R.T.S.
(Helping Empty Arms Recover Through Sharing) is a Baby Loss
Support Program for anyone who has been touched by the loss of a baby
during Pregnancy or shortly after Birth. One-to-One Support, Group Meetings,
Resource Library, Monthly Newsletter, Website and a Pregnancy After
Loss Group. Created in 1996 by two mothers who discovered a lack of
support in their own community after the losses of their precious babies.
Located in Sherwood Park, Alberta, Canada but open to all.
- Heavenly
Angels helps bereaved parents all over the world by offering
a safe Haven to share the loss of their angels. They believe in programs
suitable for each different bereaved parent, activities that continue
a healthy grieving process, and Memorials like online Memorials along
with actual Memorial Quilts.
- Heavenly
Angels In Need. A woman's personal ministry as led to a help
site with all kinds of way for you to help. Of special note are her
free patterns for knitting, crochet, sewing to make things like burial
gowns, blankets, etc.
- Heaven's
Lullaby. At Heaven's Lullaby you can find information about
different types of pregnancy and infant loss, and free memorial pages
for your little one. Includes info on Ectopic Pregnancy, Miscarriage,
Stillbirth, Abortion, Prematurity , SIDS and Anencephaly.
- Honored
Babies for those who have experienced miscarriage, stillbirth,
neonatal death, and/or pregnancy termination. You'll find an online
Memorial, Support Email Lists (separate lists for Mothers and Grandmothers),
a comprehensive Resource Center, and Keepsakes.
- Infants
Rememberd In Silence, Inc. is dedicated to offering support,
education and resources to parents, families, friends and professionals
on the death of a child in early pregnancy (miscarriage, ectopic pregnancy,
molar pregnancy, etc) or from stillbirth, premature birth, neo-natal
death, birth defects, sudden infant death syndrome (SIDS), illness,
accidents, and all other types of infant & early childhood death.
- LaBelle
Dame. After experiencing the loss of her second child. this
jeweler designed pendants and a bracelent for mothers to remember their
angel babies.
- Lilly's
Rose Garden is a memorial book to remember little angels.
- Little
Ones Lost includes information on miscarriage, stillbirth, ectopic
pregnancy and infertility. Includes chat and guestbook as well as links
section.
- Loss
in a Multiple Pregnancy: Information and Support is the homepage
of Lynne Schulz, Co-ordinator of the Murraylands Lutheran Stillborn
Infant Support Service in Murray Bridge, South Australia. You will find
a dedication page for multiples, sharing pages, poetry, research papers,
and links.
- M.E.N.D.,
support with a Christian emphasis for those families whose baby has
died, or a subsequent pregnancy after a loss. Links to Bereaved Family
Web Pages, other resources, and info about their newsletter and program.
- M.I.S.S.
(Mothers In Support and Sympathy) is a grass roots organization
dedicated to supporting parents one to one after the death of an infant
or young child. Referrals to peer contacts and ancillary organizations
offered. List of Do's and Don'ts to help bereaved parents, and a listing
of groups and resources in Arizona.
- Maitland
Support Group Miscarriage-Stillbirth & Neo-Natal
Deaths in NSW - Australia presents this website Personal Story with
resources, Candle of Light Room, Listen to Me, Recommended Reading,
Coping with Holidays & Anniversaries
Organization& Internet Support, Wall Of Hope, Understanding Grief,
and Resolutions for Bereaved Parents.
- Maternal
Grief page of obgyn.net is devoted to comfort the sorrow of
hearts grieving the loss of babies through infertility, miscarriage,
stillbirth, neonatal death, and sudden infant death, and to offer ongoing
support.
- Mending
Broken Hearts is an easy to navigate site for bereaved families
and caregivers.Includes a guest journal, poetry, articles to help you
understand grief, and an angel baby photo album.
- Miscarriage
& Infant Loss Memorial Book. An online version of St Pauls
Tintagel Miscarriage Support Group's Memorial Book, which is kept at
the Catholic Church Tintagel Cornwall. Anyone of any religion can put
names of babies and families in the book.They hold an annual mass for
all babies who die during pregnancy and up to 1 year old and their families.
Any name put in the online book will also be registered in the printed
book.
- Miscarriage
Association of the United Kingdom offers information (including
several leaflets for sale), support services, information on upcoming
events and links
- Miscarriage
Information Page gives basic information for anyone who has
suffered a miscarriage.
- Miscarriage
Support and Information Resources. An attractive and rich source
of information for those looking for assistance after a miscarriage.
- Miscarriage
Support Groups in NZ Tips for coping with miscarriage, contact
information for Miscarriage Support Groups in New Zealand, links to
other Internet resources and access to our online support forum soc.support.pregnancy.loss.
- Missing
Grace, a personal web page, but so much more, with information
on medical issues, proactive prenatal care, how to cope, etc.
- Missing
Grace Organization (Grieve Restore Arise Commemorate Educate)
The Missing GRACE Organization serves to help families on their journey
through pregnancy and infant loss, infertility and adoption. We provide
support and resources to aid individuals as they Grieve, Restore, Arise,
Commemorate and Educate. Further, we commit to make available educational
opportunities that will help bring about awareness and prevention of
stillbirth. Missing GRACE support resources include: Membership with
quarterly newsletter and monthly conference calls, active support group
meetings, online support, annual conferences, information about
stillbirth prevention and awareness, education courses for medical professionals
and prenatal care classes for moms during a subsequent pregnancy after
loss, Crisis Care for Couples in the hours and days after a baby has
died, photo retouching, GRACE Memory Albums and up-to-date listings
of national and international resources. We also offer a keynote
speaker, drama team and dance group that can be commissioned for events
such as conferences and seminars with a focus on pregnancy/infant loss
and infertility.
- Multiple
Birth Prenatal Education & Bereavement Support. This Web
Site offers information regarding multiple births. It includes pregnancy
and post-natal information and, from the point of view of new parents,
it attempts to address some of your questions and concerns. Although
a joyous time, there are sometimes risks in multiple births. Hence this
Web Site also offers bereavement support for parents who have lost one,
more or all of their multiple birth children during pregnancy or in
infancy.
- My
Forever Child. Artisan handcrafted and personalized jewelry
and keepsakes to comfort those touched by the loss of a Child
- My
Parents Are Survivors an online support group with total support
from all over the world. This is in honor of
the Parents who have lost a child. Includes great information for all
members of the family, as well as a very large Remembrance Section.
- National
SIDS and Infant Death Program Support Center is creating a nationwide
network for private and public organizations, committed to ameliorating
SIDS and reducing infant mortality.
- National
SIDS/Infant Death Resource Center (NSRC) provides information
services and technical assistance on SIDS. If you have Acrobat Reader
you can also download The Death of a Child, The Grief of the Parents:
A Lifetime Journey.
- National
Stillbirth Society. Includes membership information, volunteer
opportunities, legislative initiatives, state director info, and more.
- Now
I Lay Me Down To Sleep. A hugely important resource of dozens
photographers around the United States who provide photographic services
for parents experiencing an infant loss, (as early as 20 weeks gestation).
At your request, they will have a professional photographer come to
your hospital location for a private and sensitive photography session.
You will be provided with a DVD of your baby set to a meaningful melody
and the CD file of all photographs taken that you can personally reproduce
up to a 5X7 size. (Please note: Each photographers offer varies location
to location. Check listing photographer for what he/she can provide.)
- Operation
Angel: A Miscarriage and Child Loss Ministry includes ideas
on how you can memorialize your baby, poetry, links, and info on how
you can participate in their Memorial projects.
- Our
Hearts Will Go On is a web site established by a group of parents
who have experienced miscarriage and stillbirth. Site includes stories
and pictures of their babies, poetry, list of suggested reading materials,
and links.
- Over
the Rainbow Online, Pregnancy and Infant Loss Support Articles
and information, interactive support groups, virtual memorial quilt,
poetry and ideas for memorialization.
- Pain,
Heartache and Hope Website by the author of a book by the same
title, where real men and women coping with miscarriage, infertility,
stillbirth, and losing a child after birth share their stories. Site
includes a Memorial Page and samples of stories from the book. Also
a link to an email support group.
- Parent
Soup offers discussion boards as well as weekly live chats on
almost every pregnancy and parenting issue you could imagine. Includes
sites for abortion loss, miscarriage, and stillbirth among its huge
offerings.
- Parents
of Multiples Forever a unique site providing support and resources
for parents who experience the loss of one or some of their multiple
birth children, either during pregnancy or anytime after birth, including
childhood.
- Perinatal
Berievement Services Of Ontario. PBSO provides a variety of
unique support services that have been tailored specifically to meet
the special needs of perinatally bereaved families. The organization
has also grown to include developing and implementing educational training
seminars for health care professionals, caregivers, clergy and funeral
directors on how to best support these families.
- Perinatal
Loss--Grief Watch offers a full line of products and
gift items, from urns to albums, many of which are handcrafted to make
them all the more special as remembrances.
- Preemie
Patterns. What a great site to link up with crocheted, knit
and sewing patterns for preemie burial pouches and burial gowns. Use
the patterns to create these much desired items for your local hospital
as a support or as a memorial to your own angel.
- Pregnancy
After Miscarriage News, links, chat, and support for those who
are pregnant after having had a miscarriage.
- Pregnancy
After Perinatal Loss. The site for at least 2 research projecdts
(one web based and one interview based) conducted by the Universtiy
of Louisville Health Sciences Center School of Nursing.
- Pregnancy
and Infant Loss Network (an extension of the SIDS Network, Inc.)
has a home page which includes guest book, information, and info on
joining a Pregnancy and Infant Loss discussion group, and a SIDS discussion
group.
- Pregnancy
Loss site is the personal mission of one parent who experienced
pregnancy loss. The site offers: information on Miscarriage, Common
Questions, The D&C Procedure, Natural vs. D&C, as well as sections
on Your Emotions, Poems, Remembering Baby, Trying Again, Gifts And Keepsakes
and Resources And Websites
- Pregnancy
Loss Resources. Includes important local resources for those
living in the Bay Area California area, as well as a good information
sheet on the kinds of things to think about in the hours, days and weeks
that follow a loss.
- Quilt
of Memories. Add your child to this memorial site.
- RainbowMaker
is a "Healing Center" founded after the loss of their first-born
son Daniel Ethan. Includes helpful articles, angel pins, book reviews,
and much more.
- Rainbows
Down Under - A Trisomy 18 & 13 Resource. A site from Australia
which includes info, information on sharing info, links, a Trisomy Listserv,
a Trisom 13, Trisomy 14, Trisomy 18 message boards, and much more.
- Remembering
Our Babies. Site devoted to promoting "Pregnancy
and Infant Loss Remembrance Day". Tells you how you can get
involved in making your country, your state, your community, your household
involved in this important remembrance event. See if YOUR state has
agreed to proclaim Remembrance Day... make sure you click to "sign
the petition."
- Rich
Remembrances. The "Forever Young Child Memorial" is an
engraving of the footprints of your child, and he has a special one
for those whose child has died (click on "Child Memorial"
on his page). The footprints are engraved in brass and are made from
a photocopy of the footprints that a hospital often provides.
- SANDS
(SO) (Stillbirth And Neonatal Death Support). Site on the SANDS
resources in South Australia. SANDS is a self-help support group comprised
of parents who have experienced the death of a baby through miscarriage,
stillbirth, or shortly after birth. This site includes book reviews,
several issues of their newsletter, events, info on the different reactions
between men and women, and a checklist for friends and relatives.
- SANDS
(TAS) (Stillbirth And Neonatal Death Support). Site on the SANDS
resources in Tasmania Australia. SANDS is a self-help support group
comprised of parents who have experienced the death of a baby through
miscarriage, stillbirth, or shortly after birth.
- SANDS
(VIC) (Stillbirth And Neonatal Death Support). Site on the SANDS
resources in Victoria Australia. SANDS is a self-help support group
comprised of parents who have experienced the death of a baby through
miscarriage, stillbirth, or shortly after birth.
- SANDS
(W.A.) (Stillbirth And Neonatal Death Support) of Western Australia.
Includes a lot of information, including a section for fathers, poetry,
articles from their newsletter, and information on their support meetings.
- SHARE
Atlanta has developed a very nice site of resources, stories
of sharing, a memorial garden, links and "Ways to Help Heal."
Also includes info on Atlanta-area events of interest. Make sure you
check out their section on "Descriptions of Medical Information"--it
is EXCELLENT!
- SHARE's
National Office is online with information on the valuable services
they offer caregivers and parents whose child has died. Site includes
list of upcoming conferences, links, and resources (books, etc.) that
Share offers.
- Sharing
Parents of Sacramento is an infant loss support group located
in Northern California, affiliated with Share. Includes their newsletter
online, as well as an events calendar and information on their services.
- SIDS
Families Support for grieving families who have lost a child
to SIDS. Includes postcards, chat room, message board, poetry, advice
and suggestions.
- SIDS
Network offers support to those who have been touched by SIDS,
links, and a mailing list. The site has really expanded to include an
entire series of FAQs as well as an extensive table of contents.
- SIDS
of PENNSYLVANIA contains information regarding support, education
and research. It also addresses the "Cribs for Kids" campaign,
which has been credited with the drop in infant mortality rates in southwestern
Pennsylvania, through the donation of over 2,500 new cribs, mattresses
and educational materials to low-income families in the Pittsburgh area.
- SIDS
- The Smallest Angels Memorial Wall lists hundreds of babies
who died from SIDS and invites other SIDS parents to do likewise.
- Silent
Grief. This is a website that is promoting 2 books and an audio
cd... but most important there is a very large number of articles, stories,
and a chat board with over 1000 members.
- Stepping
Stones offers Christian based support, encouragement and information
for couples facing infertility or pregnancy loss.
- Still
Born And Still Loved is a small yahoo group for all mothers
who have lost a baby due to stillbirth.
- Stillborn
but Welcome, The Short Life of Paul Michael, by Jörg and
Mary Barth.
- Still
Fathers. A support site for fathers who have experienced the
loss of their children. It includes background information, a meeting
schedule for those in the Seattle area, essays, and they have just started
a new message board.
- Storknet's
Pregnancy/Infant Loss Cubby. A special site of information and
support for those who have experienced infant loss. Currently moderated
by grief author Maribeth Doerr.
- Sudden
Infant Death Syndrome (SIDS) Alliance! a national, non-profit,
voluntary health organization dedicated to the support of SIDS families,
education and research. See the latest research and news regarding SIDS,
as well as events in the US focusing on the issue.
- The
Tears Foundation helps needy families in Pierce County, Washington
state USA, with the cost of their baby's funeral expenses.
- Tom
Golden's Page on Crisis, Grief and Healing, a web site focusing
on Men and Women's Differing Grieving Styles. An incredible list of
links!
- Touching
Souls, Healing with Bereavement Photography. Learn about this
amazing project (and hopefully someday a book) by photographer Todd
Hochberg. Go to "See" section to witness some of this amazing
photographic work.
- TX
Moms of Tiny Angels is a fairly new Texas organization providing
education, emotional and educational support, providing "survival
kits" to parents and suggestion packets to funeral homes. Site
includes a "parents corner" with Recommended Reading, Websites,
Support Groups, Creating Memories, Parent's Wish List, and info on Getting
Through The Holidays.
- Waiting
With Love is for parents who choose to continue a pregnancy
after learning their unborn baby will die before or shortly after birth
and for parents who learn their newborn will die soon. Site includes
parent letters, resources, and sample birth plans.
- We
will hold you in Heaven Support Group is an online "Yahoo
groups" support group for anyone who has lost an angel due to SIDS/OID,
miscarriage, eptopic pregnancy, or early child death and is looking
to give and recieve support....
- Wintergreen
Press is the website of well-known perinatal loss speaker and
author Sherokee Isle. The site is still fairly new, but it promises
to hold a lot of information in the future, including "action items"
and "resources and how-tos."
- Wisconsin
Stillbirth Service Program is a large site which includes many
links, information on stillbirth, an on-line newsletter and educational
resources. Excellent.
If you find a
bad link, or one that you think I should consider to be added, please
don't hesitate to e-mail me
with the pertinent information.
PERSONAL
INFANT LOSS/MISCARRIAGE REMEMBRANCE SITES
- C.
Elizabeth Carney's personal site related to her miscarriage
and her "12 Truths". Also includes "A Mother's Prayer
/ Affirmation After Miscarriage."
- Dedication
Page to Tyler Branden Lotz is a wonderful personal site that
incorporates their own story with pictures, poetry, links, and a place
where others can leave a memorial on the Memorial Wall.
- For
the Love of Riley. Another "personal web page" that
is well worth a visit.
- Heavenly
Treasures. Here you will find a very touching story and poetry
written by Amy Michelle Wilson which tells how she and her family have
managed to survive the loss of three of their four boys, and one of
their twin girls, over a thirteen-year period of timeeach dying
just days after birth, and each death caused by an extremely rare genetic
disorder known as NKH.
- In
Loving Memory of an Angel. A lovely personal remembrance page
for Christopher Shane Chisholm.
- In
Loving Memory of Ethan Paul Miller. Personal story, poetry,
and pictures dedicated to Ethan, born 4-15-04, died 5-27-04
- In
Loving Memory of Matthew Kristopher Mosquera. Another personal
website that gives you a very good idea of how nicely a remembrance
site can be.
- Love
Never Dies -- A Tribute to Geordi is a personal site dedicated
to an 18-month old who died after surgery to correct a congenital heart
defect. Includes support information at the very bottom of the page,
including how her parents coped with her death. From this site you can
link to the "Congenital Heart Disease Ring."
- Michaela's
Hope a web site dedicated in memory of our precious angel, Michaela
Hope Bucher, and all babies with Anencephaly. A personal page telling
the story of her birth, her journey home, and her death--a short life
filled with love from her family.
- Sahara
and her friends in Heaven started as a personal site in remembrance
of Sahara Kegley, who lived only two hours. But it has turned into much
more with chat area, remembrance pages, and a list of people available
by email for those who need to talk to someone.
RELATED
TOPICS
- A
Heartbreaking Choice, for parents who have interrupted a pregnancy
after prenatal diagnosis revealed serious fetal anomalies. It includes
a listserv mailing list option.
- Abortion
- Post Abortion Stress Syndrome Support is a non judgmental
place for women who have had abortions to find support and recovery
for their loss. This is a place for healing and strives to be "politically
neutral", and so it does not allow the political issues of abortion
to enter its chat rooms.
- About.com's
Guide to Infertility is an extensive site focusing on all issues
related to infertility, including Pregnancy Loss and A Pregnancy After
Infertility or Loss.
- Aicardi
Syndrome web page. Web site for the Aicardi Syndrome Foundation
with inforamtion, stories, and links.
- Always
Loved, Never Forgotten. Newsletter/Support group for anyone
who has ever lost a child of any age.
- American
Academy for Cerebral Palsy and Developmental Medicine (AACPDM),
includes news, information on meetings, library/review lists, information
on research, and will soon be premiering their discussion group.
- American
Psychiatric Association site is primarily for its professional
members rather than for the public.
- American
Psychological Association web site includes a large section
for the public dealing with many topics of interest, including depression.
- Anencephaly
Support Foundation provides information, personal stories, and
medical articles regarding the neural tube defect of anencephaly.
- APERT
Syndrome. Information site.
- Ask
NOAH About: Pregnancy and Childbirth Problems & Risks. If
you can't find it on this list you have a rare question indeed! I counted
over 300 categories/links on their list!
- At
Health, Inc. includes excellent brief overviews of such mental
health issues as bereavement, depression, stress and anxiety. Also includes
names of mental health professionals around the United States who deal
with such issues.
- BabySteps
is a a resource canter for parents and children who have lost a child
or sibling of any age, and also provide a place of comfort. Sometimes
I have trouble loading the front page, but once inside you will find
a Sharing Room (one for kids, one for adults, and one for professionals),
a brand new remembrance section (for children of any age), and a wonderful
section with short reviews of over 65 books related to grief and loss
of a child. (Note: if all else fails and you can't get through the main
door, try
http://www.babysteps.com/rrmainframe.html, which is the resource
page.)
- Birth
Defects Research for Children. Provide comprehensive fact sheets
about birth defects, as well as other information. Also provide parent
matching opportunities and information resources, including books and
links or participate in the National Birth Defect Registry.
- Bruderhof
Grief Companion. Everyone grieves differently. But no one needs
to carry grief alone. Whatever loss you are grieving, here you can share
your loss with others, and find material that other grieving people
have found helpful and comforting. Grieving takes time. Take time to
grieve.
- Bryan's
Kidney Page A page about pre-birth kidney failure and options
other than termination. This page is a personal story but it is so much
more with an incredible amount of important links for all kinds of special
needs.
- Cerebral
Palsy. A wonderful overview of cerebral palsy in an article
titled "When Your Child Has Cerebral Palsy" on the KidsHealth.org
website.
- CHARGE
association (or syndrome) is an acronym referring to children with a
specific pattern of birth defects. The acronym is: "C" for
coloboma, "H" for heart defects, "A" for atresia
choanae, "R" for retardation of growth and development, "G"
for genitourinary problems, and "E" for ear abnormalities.
Information site.
- Cherubs
is the official site of The Association of Congenital Diaphragmatic
Hernia Research, Advocacy, and Support. Extensive site. Lots of information.
Fun graphics. Bulletin boards and program information. Information also
available in Spanish, French, Portugues, Italian, and German.
- Children's
Disability List of Lists is a current, annotated list of mailing
lists for families of children with disabilities and special needs...and
there are hundreds covered!
- Cleft
Palate Foundation. American Cleft Palate-Craniofacial Association/Cleft
Palate Foundation site. Information sides for both parents and for caregivers/health
professionals. Also a site in Spanish.
- Complications
and Medical Problems in Pregnancy. Over 50 different categories
to choose from all the way from "Caffeine can cause miscarriage"
to "Fibroid tumours" to "I want a baby but I'm epileptic".
Check it out...
- Complications
of Pregnancy. Quite extensive pregnancy site of Robin Elise
Weiss, Childbirth Educator (and who has had seven pregnancy losses)
which includes this section on pregnancy complications.
- Crouzon
Support Network. An organization for individuals and families
who are dealing with Crouzon Syndrome and other cariofacial anomalies.
- Cystic
Fibrosis Foundation, Offers extensive information and referrals
to local chapters, support groups, medical information and a newsletter.
- Depression
After Delivery, Inc. is a national nonprofit organization that
provides support for women with postpartum depression.
- Dougy
Center, The National Center for Grieving Children and Families,
provides support and training locally (Portland OR), nationally and
internationally to individuals and organizations seeking to assist children
and teens in grief.
- Down's
Syndrome: For Parents Includes questions and answers, reading
list, stories, a forum, web rings and list of resources.
- Ectopic
Pregnancy Trust. Find out about the symptoms of an ectopic pregnancy
and how they happen and read our answers to your most frequently asked
questions. Read about chlamydia trachomatis, our diagnosis guidelines
and our recommended books and other websites.
- Emergency
Child Birth. (Steps to Take In an Emergency Child Birth Situation).
Here are some of the basics in a step by step format on what to do in
various emergency birth situations... when not to transport a mother;
what do do if the baby is delivering; what to do with the placenta;
should you cut the cord?. Also talks about what to do in post and pre
delivery emergencies such as multiple birth, umbilical cord accidents;
wedged shoulders, breech birth; and excessive bleeding.
- Empty
Arms UK. This site is for women dealing with Endometriosis and
Infertility. It is designed as a means of support, encouragement. Includes
information, forums, guestbook, articles, stories, links and web rings.
- Esophageal
Atresia Index. The purpose of the web site is to provide information
to the families of babies suffering from
Esophageal Atresia and Tracheoesophageal Fistula, as well as to health
care providers who would like to review their treatment.
- Family
Village is a "global community of disability-related resources."
- Fertile
Thoughts is a site focusing on infertility, surrogacy, pregnancy
and adoption.
- Fernside
is a beautiful site for grieving children and their families: "we
know that the grieving child has the capacity to rebuild, so we gently
encourage sharing of stories, feelings and memories with trusted friends,
honoring each one's search for a new beginning." Includes a kids
area, grownup area, and resources.
- Fetal
Alcohol Syndrome. Some straight talk facts about Fetal Alcohol
Syndrome--dispelling the myths.
- fetal-surgery.com
Information regarding fetal surgery for spina bifida.
- Fetal
Treatment Center at UCSF Children's Hospital is a world
leader in diagnosing and treating birth defects, using advanced
therapies including fetal surgery. They have an extensive website including
information on prenatal
diagnosis.
- Genetic
Alliance includes a Directory of National Genetic Voluntary
Organizations (list of over 300 support groups).
- God's
Little Ones. This artist creates incredibly lifelike dolls for
people to remember their babies. The dolls range in gestational age
from 6 weeks to full-term. The artist is a mother of a miscarried baby
born at 8 weeks gestation, and preemie twins born 8 weeks early. The
portrait dolls on this site were all made at the request of the parents
of these real children. A couple warnings: first the site may be very
slow to download as it is full of pictures and graphics. Secondly, this
site is decidedly pro-life. And, thirdly, the images are very real and
life-like (made from resin) and may be very intense for persons who
have lost their infants through miscarriage or stillbirth.
- Good
Grief Rituals gives support for parents with poor prenatal diagnosis
prior to birth and after-support. Poetry, personal stories, remembrances,
support groups are just a few areas in this site.
- Grief
Net. A "general" grief site which includes: library;
bulletin board; resource center; links to emergency services and a shopping
mall.
- Grief
Resources. A site which offers the general grief resources
of several companies. The video / audio offerings look especially promising,
and there are cards as well as several book/booklets on specific grief
topics.
- Group
B Strep Association
- HER
Foundation is a non-profit organization dedicated to hyperemesis
gravidarum (HG) research and education and to those suffering from HG
or those who have survived it.
- HGSurvivor.org
is a website that is dedicated to women and families who are suffering,
or have survived, Hyperemesis Gravidarum (HG). HG is a severe form of
dibilitating morning sickness that occurs in approximately 2% of all
pregnacies.
- High
Risk Situations and Complications in Pregnancy. A sub-section
of the OnLineBirthCenter, there are links here to many kinds of high
risk situations including: Screening & Testing; Violence & Sexual
Abuse; HIV and AIDS; Group B Strep; Preeclampsia; Drugs, Alcohol, and
Pregnancy; C-Section and VBAC, etc.
- Hoping
Skills Company. Lots of sympathy gifts to help children and
adults cope with grief and loss.
- IVF.com
Endometriosis Homepage. A wealth of information on infertily,
in vitro fertilization, endometriosis. Includes chatline, guestbook,
FAQs, bookstore.
- INCIID
The International Council on Infertility Information Dissemination.
If you are seeking information on infertility, this is a great place
to start since it is the largest (they claim over 4 million hits per
month). Includes fact sheets, several bulletin boards, links, and a
directory of physicians, therapists and attorneys. Includes experts
who are online at specified times to answer consumer inquiries.
- Infertility
Blues. A Mind/Body Approach to Help Women Cope with Infertility
and Enhance Fertility.
- Infertility
Home on the Net is a couple's guide to overcoming infertility.
- Internet
Resources for Special Children. A "links" site which
connects you via internet to sites from autistic spectrum disorders
to rare disorders such as prader-willi syndrome, schizencephaly, and
everything inbetween: blind & visually impaired; brain injuries;
congnitive disorders; communication disorders; deaf & hearing impaired;
diseases such as diabetes and conditions such as cleft lip; learning
disabilities such as ADD and dyslexia; musculoskeletal disorders such
as dwarfism; to neurological disorders such as cerebral palsy and epilepsy;
many others.
- Journey
of the Hearts, a Healing Place in Cyberspace is an all-encompassing
site focused on general grief. It's sections on loss, coping, and on
how to help someone else who is grieving are well worth a visit to the
site. It also has a very extensive resource section on medical information
links on a huge range of topics.
- Julia's
Journey with Spina Bifida. Includes personal stories, information,
and links on Spina Bifida and Hydrocephalus.
- Labor
of Love Pregnancy and Parenting Search Engine is a search engine
devoted specifically to pregnancy-related issues and includes links
for High Risk, Loss Support and Miscarriage among many others. Includes
large book lists on topics of interest and information articles, i.e.
ectopic pregnancy.
- The
Langer-Giedion Syndrome Association supports families affected
by the Trichorhinophalangeal Syndromes (I, II, & III) and works
with medical specialists to promote research. This website includes
a discussion board and article abstracts in addition to links.
- Lifelike
Sculptures. Jennifer makes original, one of a kind baby sculptures.
She take custom orders for sculptures of babies based on photos and
centered on a celebration/honoring of babies before and after birth.
She began sculpting after losing quintuplets, born at 23 weeks gestation,
so her heart is definitely in what she does. The sculptures are not
inexpensive, but seems more than reasonable for the incredible works
of art that she produces.
- Living
With Heart is for people who are working to put their lives
back together after the chaos of trauma; who want to move past the grief
trauma causes and rebuild a life of meaning and joy. This is a
place for people to come together to find hope and encouragement, to
share knowledge and wisdom, and to learn.
- Living
with Trisomy 13. This site focuses on bringing the families
of beautiful Trisomy 13 ( Patau Syndrome) children together. Sharing
their stories of living and growing in love in the challenges of raising
a Trisomy 13 child. It is our wish that the photos will bring great
HOPE, Support and inspire those visiting the site.
- Loss
On-Line Support is an ezine published monthly by Koto Press,
who also publishes several loss books. The have the loss ezine issues
available for you to peruse. And, if you click on the "Mrs. Duck
Project" you will be treated to the story in a Flash version and
in an html version as well as learn how to become a participant in the
Mrs. Duck Project.
- Male
Infertility MDs. A index site to help you find a male infertility
specialist closest to you. Also includes some basic info on maile infertility.
- March
of Dimes Birth Defects Foundation, Offers information, referrals
and education on many prenatal, pregnancy and child related issues to
improve the health of babies by preventing birth defects and infant
mortality. Local chapters throughout the country.
- Monoamniotic
Monochorionic Support Site. The web site for expectant
and experienced parents of monoamniotic twins, formed by experienced
and expectant parents reaching out to each other to help support each
other through the difficult times. Includes great explation of monoamniotic
twins, as well as lots of links to important medical as well as lots
of support sites.
- Multiple
Birth Prenatal Education & Bereavement Support. This Web
Site offers information regarding multiple births. It includes pregnancy
and post-natal information and, from the point of view of new parents,
it attempts to address some of your questions and concerns. Although
a joyous time, there are sometimes risks in multiple births. Hence this
Web Site also offers bereavement support for parents who have lost one,
more or all of their multiple birth children during pregnancy or in
infancy.
- Multiple
Birth Resources Updates, information on video education and
on MBR classes.
- MUMS
National Parent-to-Parent Network is a non-profit support organization
for families of children with rare disorders or medical conditions and
also for service providers who assist these families. Parents are matched
or sent a list of other parents whose children have the same or similar
diagnosis ($5.00). MUMS' database has over 18,000 families registered
from 54 countries and represents over 3000 rare or not so rare disorders
or medical conditions.
- National
Adoption Center A non-profit organization whose mission is to
expand adoption opportunities throughout the United States for children
with special needs and those from minority cultures.
- National
Adoption Information Clearinghouse, a federally-funded one-stop
resources for information on all aspects of adoption.
- National
Information Center for Children and Youth With Disabilities
is an information clearinghouse that provides information on disabilities
and disability-related issues. Children and youth with disabilities
are a special focus.
- National
Institute for Trauma and Loss in Children (TLC) Parents Trauma Resource
Center. TLC's Parents Trauma Resource Center is an excellent
site for parents and caregivers to easily find detailed information
about grief and trauma as well as ways to help themselves and their
children.
- OB
Focus. Well here is a site that every hospital should consider
building. Devoted to prenatal diagnosis, management of medical complications
of pregnancy and management of complicated pregnancy they have built
a most incredible site of information and helpful tools to pregnant
parents. Includes everything from naming and birthstones all the way
to explanations of blighted ovum, placenta accreta, RH disease, etc.,
etc. Wonderful work San Gabriel Valley Perinatal!!
- Parent
Soup offers discussion boards as well as weekly live chats on
almost every pregnancy and parenting issue you could imagine. Includes
sites for abortion loss, miscarriage, and stillbirth among its huge
offerings.
- Paternity
Angel. Someone HAS done an entire (and complete) website for
MEN and pregnancy! If your significant other is pregnant you have got
to bookmark this page!
- Polycystic
Ovarian Syndrome Association. The website for the POSA, a a
national nonprofit organization operated by women with Polycystic Ovary
Syndrome. Includes information on the syndrome, a quiz help narrow in
on symptoms, email lists/chats/discussion boards, and info on regional
and national coferences regarding POS.
- Potter's
Syndrome. A website devoted to Potter's Syndrome (renal agenesis),
one of several serious or fatal kidney abnormalities. In Potter's (or
Potter) syndrome the baby's kidneys do not develop in the first few
weeks of life in the womb. They have an online support fourm is http://forums.delphiforums.com/potterssyndrome/start
- PPD
Support Group. Includes information, stories, forum, chat group,
support info, contact information, and online support for those suffering
from postpartum mood disorders.
- Preeclampsia
Foundation. A non profit organization dedicated to funding research,
raising public awareness, and providing support and education for those
whose lives have been touched by preeclampsia and other hypertensive
disorders of pregnancy.
- Pre-eclampsia
site. Information about Pre-eclampsia, Eclampsia and HELLP Syndrome.
This is a very personal site, with many true stories, pregnancy diaries,
special babies, a very supportive email discussion group and much more
including memorials for losses due to pre-eclampsia, eclampsia or HELLP
Syndrome as well as the stories of those babies who have beaten these
conditions. Site based in the United Kingdom
- Pregnancy
and Asthma. If you are pregnant and have asthma, this is an
important site. Includes why it is important to control asthma during
pregnancy and asthma treatments during pregnancy. Also has a FAQ.
- The
Pregnancy Institute, Inc., is a non-profit organization created
to study normal pregnancies. It is designed to promote the likelihood
of healthier pregnancies resulting in well monitored, full-term live
births. Has strong emphasis on Umbilical Cord accidents and currently
has at least 5 Case Studies going on.
- PregnancyMD
is a site which offers both free advice as well as paid fee services
for those who are struggling with issues of infertility. Includes fact
sheets, support groups, links page, a list of worldwide fertility centers,
and free newsletter.
- Problems
During Pregnancy. WOW--what a wonderful resource of the Medybiz.com
website! Talks about the most common problems such as itching and backaches,
all the way to such special issues as ectopic pregnancy, gestational
diabetes, to placenta previa.
- Rachel's
Vineyard. Site is for any person who struggles with emotional
and spiritual pain of past abortion(s). Offers information, training
and publications, and sponsors what we feel are weekend workshops around
the United States (we counted 40 state locations) and 7 other countries.
- Ramah
is a nonprofit site ministering to those suffering from Post-Abortion
Syndrome (PAS). This site is not position neutral (it is pro-life),
but it is a valuable site for those who who are looking for support
and resources in an effort to restore shattered lives.
- Safe
Haven is a place for healing from the trauma of abortion. Although
the site says that they are not going to debate legality, morality or
the religious ethics of abortion, please be aware that this site is
definitely leaning to the pro-life side. However, having said that,
it is an excellent site offering information on Post-Abortion Syndrome,
provides crisis pregnancy information, offers a moderated bulletin board,
and includes a section for men.
- Save
Babies Through Screening Foundation is a national nonprofit
public charity run by volunteers. Its mission is to improve the lives
of babies by working to prevent disabilities and early death resulting
from disorders detectable through newborn screening.
- Shattered
Dreams. For mums and dads in the UK that have been affected
by Pre-eclampsia/Eclampsia/HELLP Syndrome, what ever the outcome. Includes
all the latest reasearch and also a link to the UK Support group that
has chat rooms twice a week.
- Sidelines
is a network of support groups around the US for women with complicated
and "high-risk" pregnancies.
- Skyler's
Site. A personal web page to remember Skyler, who was born with
down syndrome and a heart defect and who died of pulmonary hypertension
at 20 months.
- SOFT.
S.O.F.T. (Support Organization for Trisomy 18, 13 and Related Disorders)
is a nonprofit volunteer organization offering support for parents who
have had a child with a chromesome disorder (such as Trisomy), and education
to familes and professionals interested in the care of these children
- SPALS
(Subsequent Pregnancy After Loss Support) is an email-based
discussion group providing self-help support for subsequent pregnancy
after a loss.
- Stepping
Stones offers Christian based support, encouragement and information
for couples facing infertility or pregnancy loss.
- Survivors
of Abortion is a MSN community support group for those who have
had an abortion. There are 12 different message boards to read as well
as members story, a chat room (at specific times) and other sections
including those for rape victims, for men. and grandparents. Email registration
necessary to access some sections.
- Sympatico
- This may take a little bit to follow because the site is so incredibly
extensive. But it is well worth the effort as you can look through reviews
of sites of hundreds of health topics, including premature delivery,
miscarriage, stillbirth, SIDS, and probably most every other medical
topic you may want. A hugely important site!
- Tapestry
Books commercial site on adoption and infertility with hundreds
of available titles and resources.
- TAR
Syndrome, Alex`s website. A personal website help meant to help
anyone confronted with TAR's Syndrome and at the same time find support
for webowner's own son.
- Treacher
Collins Syndrome. The wonderful personal reflections and yet
highly informative web site on Treacher Collins Syndrome, a genetic
craniofacial birth defect.
- Triplet
Connection is a nonprofit network of caring and sharing for
multiple-birth families. They provide information to families expecting
triplets, quadruplets or more as well as encouragement, resources and
networking opportunities for families who are parents of larger multiples.
Includes a chat room, topics of interest, links, products, and information
on their convention, among other things.
- Trisomy
18 Support Foundation, Families Caring for Families, is a support
group for parents pregnant with, parenting, or grieving the loss of
a child with trisomy 18.
- Turner's
Syndrome. This extensive link provides exhaustive resources
and information on Turner's Syndrome.
- Twinless
Twins gives support to those who suffer from the loss of companionship
of their twin through death, estrangement or in-utero loss.
- Ultrasound
and other Prenatal Diagnostic Tests. Site of R. Harold Holbrook
Jr. M.D, Division of Maternal-Fetal Medicine, Stanford U. School of
Medicine. Includes info on Ultrasound, Genetic Amniocentesis, Percutaneous
Umbilical Blood Sampling (PUBS), Chorionic Villus Sampling (CVS), Expanded
- Alphafetoprotein Screening test (X-AFP), Link to Group B Strep Guidelines
from CDC, Rh Disease in pregnancy , Choroid plexus cysts, Ashkenazi
Jewish Genetic Diseases, and Cystic Fibrosis Screening Information.
- Uterine
Fibroids. A single information page with a good overview of
description and treatment of uterine fibroids.
- Warning
Signs Of Possible Problems In Pregnancy. A short list of warning
signs that signify you should contact your physcian immediately.
- Willowgreen.com.
Especially check out their free e-cards for "grief" and for
"transition"! They are absolutely wonderful.... Also includes
readings on grief, illness, and transition.
- Women's
Surgery Group. Providing extensive information on a host of
women's issues, including endometriosis, infertility, extopic pregnancy,
fibroids, adhesions, ovarian cysts and tumors, etc.
- Zellweger
Baby Support Network. If your child has been diagnosed with
Zellweger Syndrome, they want to help you. This disorder is rare, but
you are not alone. Site includes information as well as message boards.
If you find a bad
link, or one that you think I should consider to be added, please don't
hesitate to e-mail me with
the pertinent information. |