More.
Stillbirth is defined as the death of the fetus any time after the 20th to 24th week of pregnancy, and occurs approximately once for every 115 births. Full-term stillbirths, like Katie's, occur about once in every thousand births. Full-term stillbirth, in which case the baby would have been viable outside the uterus, is also known as Sudden Antenatal Death Syndrome (SADS). Often, there is no official cause of death, though now many medical professionals are looking more closely at the umbilical cord as a culprit. It can attach improperly into the placenta, or in the wrong spot entirely. It may have too few blood vessels, which can impair the amount of blood the baby gets, which presents further complications if the cord is compressed, even a wee bit. The cord can twist and twist without actually wrapping around the baby, preventing proper flow. It can also get tied in a knot, wrap around the baby's neck, or foot, or get pinched in some other problematic way.

There are organizations that research the causes of full-term stillbirths, a form of death not well-undestood, in the hopes of finding remedies. For instance, SIDS (Sudden Infant Death Syndrome) cases dropped significantly when researchers discovered that putting baby to sleep on her back was safer than letting her sleep on her belly. The SADS researchers are hoping to find a similar link. These groups hope to simply make more people aware of stillbirth, which should be helpful, too.

I'm not convinced that the term "stillbirth" evokes the correct emotions for most people, which makes it difficult for me to say out loud to someone, "My daughter was stillborn." I don't want people to think of her as "just a fetus" or a miscarriage. My daughter was loved, fully-gestated, viable, and she died pointlessly. We changed our whole lives for her. I gave birth to her. My milk came in, despite the proximity of my breasts to my broken heart.

We know that there will be good times ahead, but our hearts will always bear this wound. We will never stop wondering what she would have been like now.

Because the term is not well-understood, parents are issued fetal death certificates, and often left to try to make sense of the anguish, despair, guilt, and grief on their own by family and communities, who, without a proper frame of reference, don't quite comprehend. The organizations who provide advocacy for parents in this terrible situation, as well as awareness for everyone else, deserve so much praise.

Unfortunately, despite our best efforts, babies continue to die, leaving their parents and other family members in shock and pain. Because infant death is a sad reality, some organizations' work focuses on solely on comforting parents during this bleak time, by providing bereavement kits, free photographic services, flowers, mementos, books, and so forth. These tools help parents learn to accept their new circumstances, and incorporate the loss into their lives.

It's been a year since we lost Katie, and we miss her every day, and will continue to miss her. We still struggle with why this happened. There is no reason for perfectly good babies to die. We've had some good help along the way that we'd like to share with you, in case you'd like to make a donation in Katie's name, or would like to get involved, or simply want to learn more.

MISS Foundation (Mothers in Sympathy and Support)
www.missfoundation.org
PO Box 5333
Peoria, Arizona 85385
The MISS Foundation is a nonprofit, international organization which provides support to grieving families, empowerment through community volunteerism opportunities, public policy and legislative education, and programs to reduce infant and toddler death through research and education.

A Small Victory
www.asmallvictory.org
A Small Victory is a non-profit organization offering support to newly bereaved parents by providing "Loss Kits" which will gently guide them in creating memories to last a lifetime.

March of Dimes
www.marchofdimes.com
Their mission is to improve the health of babies by preventing birth defects, premature birth, and infant mortality. They carry out this mission through research, community services, education and advocacy to save babies' lives.

National Stillbirth Society
www.stillnomore.org
This parent-led group promotes greater stillbirth awareness, research and reform. It is an activist organization, fighting to overcome the inertia of traditional practices and to challenge those medical care providers who routinely accept stillbirth as an unfortunate but unavoidable outcome of pregnancy in a small percentage of cases.

There are endless ways you can help, on your own.

Does your state issue only a Certificate of Fetal Death upon stillbirth? Or is the optional Certificate of Birth Resulting in Stillbirth offered? Check out www.missingangelsbill.org/stchart.html and contact your governor if your state only offers fetal death certificates. New Jersey offers a birth certificate for stillborn babies, and we sent away for ours. We can't say that it made us feel better about what happened to us, but it acknowledges that Catherine was a person, was loved, and that Chrissy birthed her. We have met people in other states where only the fetal death certificate is issued, and they are demoralized and frustrated to not have this small bit of dignity. In the last year, several states opted to start issuing birth certificates for stilborn babies, notably California, Arizona, and South Dakota. A grandmother of a stillborn baby girl is almost entirely responsible for the new legislation in South Dakota. It only takes a few minutes to email your governor.

Are you artistic? You can offer to touch up photos of deceased babies for their parents, or make softer, more loving paintings or sketches from the photos. Many hospital nurses take photos of deceased children for their parents, but if you're a photographer, think about donating your time to do this work instead: it may be emotionally difficult, but certainly, you'll be able to do a better job than most staff members at hospitals, and will help create loving memories for parents.

Handy with needlecrafts? You can knit blankets or caps, or sew outfits for stillborn or terminally ill babies. Other ideas: you can help offset the cost of renting home monitoring equipment for women who get pregnant after their loss, and want some reassurance.

Most importantly, if you know someone who has lost an infant -- particularly at term -- please remember that the mother did in fact give birth, and that she is going through all of the hormonal shifts that a mother of living baby goes through, only she has a broken heart, and might be in shock, on top of having an aching body. Do not ask her what she needs, or ever say, "Call me if you need anything." She needs her baby; failing that, she needs anything you can give, without having to ask. Go to her house and bring a meal. Do the dishes. Throw in a load of laundry. Make sure the pets are fed, the litter box is cleaned, the mail is being read. Contact the companies where she had a baby registry, so she does not receive (like we did) the "Let us help you throw your baby's first birthday party" literature, and everything else throughout the year. Brush her hair, do her nails. Hug her, let her know you care, and let her cry. And, please, ask her about her baby. So many people are afraid of upsetting the parents and don't bring up the baby. The baby has been their whole life for nine months, and the parents have been robbed of their dreams, and to not talk about the baby fosters a sense of isolation.

Check out the websites above for more ideas.


Back to Remembering Katie.
Please take a few minutes to view Katie's memorial, a wonderful outpouring of love from her friends and family.