Every year, 26,000 babies are stillborn in America. In 2003, one of them was my son.

Sunday, October 31, 2010

Day of the Dead

It's the last day of my 31 days of posting for stillbirth awareness. I am both relieved and torn: some days I feel as if I dwell in this land of broken hearts far too much, while on others I simply acknowledge that this is my life. Or part of it, anyway.

Today is also All Saint's Day, tomorrow is the Day of the Dead. I don't know much about the Day of the Dead, but it seems a fitting time to end my month of blogging. I follow no rituals for this day, or tomorrow, other than tonight's trick-or-treating, handing out candy to little goblins, princesses, and skeletons. But I remember the ones I miss, who are no longer here, who have changed me.

I don't have an altar for Ben, though sometimes I wish I did. Other days I think no, it would be too much for me.

Nor do I have a place to go, to pay homage to him, to sit by his grave and offer him food and drink, candles and light. What is left of him is in my bedroom, in a wooden box sealed shut.

We have it all wrong here in America: bury the dead or scatter their ashes and do our best to forget. How do you forget the child you carried inside you, who kicked you and hiccuped and kept you awake at night, then slipped from your body silently, never to take a breath?

Yes, I want an altar, a gravestone, an offering. A way to honor one of the loves of my life.

Saturday, October 30, 2010

Stillbirth--We Need to Know More

I've said it before and I'll say it again: we don't know enough about why stillbirth occurs, and how to cut down the numbers. People are speaking up about the lack of research, the dismissal of our grief, trying to make a difference.

Kate Greenwood, a research fellow at Seton Hall's Center for Health & Pharmaceutical Law & Policy, posted on the Seton Hall Health Reform Watch blog about this very issue. Here's an excerpt of what she says; here's the link to the full post.

"While the ubiquitous pink ribbons (and pink everything else) ensure that everyone knows that October is Breast Cancer Awareness Month, less well known is that it is also Pregnancy and Infant Loss Awareness Month[1], proclaimed so by President Ronald Reagan in 1988.  As I wrote last October, about 1 in every 160 deliveries in this country ends in a stillbirth, and all too frequently no one can say why.  Stillbirth is a “largely unstudied …  problem in obstetrics.”

Encouragingly, the work of the physicians and scientists participating in the National Institute of Health’s Stillbirth Collaborative Research Network (SCRN) is beginning to bear fruit.  The August 2010 issue of the journal Obstetrics & Gynecology included an important article in which the SCRN investigators presented their “standardized method to assign probable and possible causes of death of stillbirths based on information routinely collected during prenatal care and the clinical evaluation of fetal death.”  Rigorously defining and more accurately determining causes of fetal death will both facilitate research and have useful clinical implications.  As the authors note, “[a]ccurately assigning a cause of fetal death is critically important for counseling grieving families.”

Friday, October 29, 2010

Poetry for the Grieving

The Five Stages of Grief

The night I lost you
someone pointed me towards
the Five Stages of Grief.
Go that way, they said,
it's easy, like learning to climb
stairs after the amputation.
And so I climbed.
Denial was first.
I sat down at breakfast
carefully setting the table
for two. I passed you the toast -
you sat there. I passed
you the paper - you hid behind it.
Anger seemed more familiar.
I burned the toast, snatched
the paper and read the headlines myself.
But they mentioned your departure,
and so I moved on to
Bargaining. What can I exchange
for you? The silence
after storms? My typing fingers?
Before I could decide, Depression
came puffing up, a poor relation
its suitcase tied together
with string. In the suitcase
were bandages for the eyes
and bottles of sleep. I slid
all the way down the stairs
feeling nothing.
And all the time Hope
flashed on and off
in defective neon.
Hope was a signpost pointing
straight in the air.
Hope was my uncle's middle name,
he died of it.
After a year I am still climbing,
though my feet slip
on your stone face.
The treeline
has long since disappeared;
green is a color
I have forgotten.
But now I see what I am climbing
towards: Acceptance
written in capital letters,
a special headline:
its name is in lights.
I struggle on,
waving and shouting.
Below, my whole life spreads its surf,
all the landscapes I've ever known
or dreamed of. Below
a fish jumps; the pulse
in your neck.
Acceptance: I finally reached it.
But something is wrong.
Grief is a circular staircase.
I have lost you.

              --Linda Pastan

Thursday, October 28, 2010

A Letter to Family and Friends: What Not to Say after a Stillbirth

*I've written on this topic before, but it's an important one, so I'm doing it again in the hope that families and friends of couples who have a stillbirth will find it and educate themselves on what not to say to those who have suffered a loss.

Dear Family and Friends,

     Please don't tell me that my baby's death was for the best. I miss that child more than I could ever say, and the death of a much loved, much wanted child is never for the best.
     Please don't tell me I have an angel watching over me. I don't want an angel, I want my son. If I have living children, please, please don't say, "Well, at least you have your other child(ren)." Children aren't interchangeable, and though I know how lucky I am--and I am so very grateful for those children--my heart is permanently broken because my new baby is gone. You wouldn't tell me, if a sibling died but I still have living brothers and sisters, "Oh well, you still have your other siblings." Would you? People are not interchangeable.
     Please don't tell me I can always have another. You don't know that, for sure. Another pregnancy may not be possible for me, and even if it is, another child will never take away the hole in my heart left by this baby's passing.
     Please, don't tell me my child died "for a reason." What possible reason could he had died for? There is no reason on earth that could make his death feel better for me, ever. Babies aren't supposed to die.
     If you don't know what to say, simply say "I'm sorry. I'm thinking of you and I hate that this happened."Don't be frightened of my tears, and don't think that if I cry you have brought up the sorrow--it is always there, and I am most likely crying every day. I need to cry. It's part of my healing. Allow me that.
     I will never get over this. I will survive the intense sorrow and pain, but I will carry my child's death with me all my life. Every Mother's Day, every Father's Day, the holidays, the anniversaries and birthdays not shared will hurt. Please remember them, and remember my child. Speak his name. Saying my child's name is one of the greatest gifts you could give me, for I don't want him to be forgotten.
     I am not going to be the same person you knew before. Respect that. In the first year, I will not want to attend baby showers, see babies, see pregnant women, will not return to life "as normal." Give me time and space to return to the world as I am able.
     Let me know that you are thinking of me, with phone calls, cards, even e-mails. Understand I may not feel up to replying but I appreciate knowing I have not been forgotten.
     There is no timeline for grief, no magic day when I will be "over it." Please don't tell me to move on; I need time to look to the future, but how much time I do not know.
     Remember this: my child was real; I held him in my arms, took his pictures, kissed his head. I will miss him every day of my life.

Wednesday, October 27, 2010

U.S. News & World Report - Stillbirth Can Be Devastating, Unpredictable

Despite the rather obvious title of the article, I'm still impressed that U.S. News & World Report posted an article about stillbirth on their website.

The article references Dr. Alexander Heazell (mentioned in a post two weeks ago, Words from a Doctor About Stillbirth), who lost his first child, Jack, to stillbirth at 26 weeks.

The article states this:

"What is known is that stillbirths that occur before 32 weeks tend to result from different causes than those that occur later in pregnancy, said Dr. Alan Fleischman, medical director for the March of Dimes Foundation.

Factors that contribute to stillbirths earlier than 32 weeks are often similar to those that raise the risk of premature birth: smoking, alcohol use, obesity, clotting or metabolic problems and kidney or liver disease in the mother, Fleischman said.

During the final weeks of pregnancy, stillbirth is often due to a catastrophic problem with the placenta or the umbilical cord, including placental abruption, when the placenta sheers off the uterine wall, leaving the baby without oxygen and nutrients.

Little can be done to prevent these types of stillbirths, Fleischman said. But some obstetricians recommend mothers "count kicks" at the same time every day to monitor how often the fetus moves. If movement drops off noticeably, mothers should seek medical attention in the hopes of delivering a baby in distress before it's too late."

Even if I had gone into labor with Ben before he died, that knot in his umbilical cord would probably have killed him. He may have already experienced oxygen deprivation because of that knot, meaning brain damage. I will never know. So far as anyone could tell, he was normal, perfect. Even with vast quantities of research into umbilical cord knots, nothing may have saved him. Perhaps nothing would have changed his outcome, but I dearly wish I could change the outcome for someone else.

Tuesday, October 26, 2010

After a Stillbirth: How Did Your Marriage Survive?

I'm working on an article on couple communication after a stillbirth for Babies Remembered magazine. It's hard to look back on the two years after Ben died and remember how ineffectively my husband and I communicated. We were both so lost in our grief and unsure how to help each other. Too tired, too worn, sometimes, to even begin to think of helping the other. I'm not proud of that time, not at all.

I stopped speaking to him, other than to say those things truly necessary. I didn't talk to him about how I felt, ask him how he felt: I simply tried to keep moving, to find the future, to stop hurting. I only wanted to stop hurting. Little did I know that by not talking to him, I was making the hurt worse for both of us.

I referenced this study a few months ago, which stated that couples who experience a miscarriage have a 22% higher risk of breaking up over a 15-year period, while those who experienced a stillbirth had a 40% higher risk of breaking up. My reaction to it was: no kidding. But when someone told us something similar 7 years ago, neither one of us believed Ben's death would harm our marriage.

We were so wrong. We've repaired the damage now, but it took a long, long time. Some days the trouble rears its ugly head, the same things we experienced then, and we are thrust back into those dark days of being unable to communicate, if only for a few hours. It's damn hard work, fixing a broken marriage, healing a broken heart.

I wish I had fully realized that men and women grieve differently, I wish I had fully acknowledged that my husband and I were going to go about mourning Ben differently. That his way was not wrong, any more than my way was right. I wish I'd known to keep talking to him, I wish I'd been able to let him break down when he needed to.

Looking back, what do you wish you had known about keeping your partnership intact?

Monday, October 25, 2010

No Psychological Risk in Children Born After a Stillbirth

This study on children (and their mothers) born after a stillbirth, is from July 2009 (hmm...am I a little behind? Yes.), but it's still interesting.

When I was pregnant with James, I (and my husband) was terrified that, among many other things, we would view the new baby as a replacement, or that we wouldn't be able to love him as much as we loved Ben, that my anxiety during the pregnancy would have a negative effect on him.

None of that came true: James is his own, unique individual, happy-go-lucky, sweet, funny, and one of the loves of my life. I can't imagine not having him here.

So I was interested in reading about this study, from The Journal of Child Psychology and Psychiatry, of mothers who experience a stillbirth and go on to have another child. It states that "There is no evidence that children next-born after stillbirth are clinically at risk compared to children of non-bereaved mothers."

But it goes on to say:

"However, the study did find evidence of less optimal mother-child interaction. Stillbirth can be a major psychological trauma to parents. Anecdotal accounts have suggested that children born subsequent to stillbirth of a sibling may be psychologically vulnerable. . . . 
The researchers found no significant between-group differences in child cognitive or health assessments, or in teacher-rated child difficulties. However, mothers in the index group reported increased child difficulties, in particular peer problems, and there were higher levels of maternal criticism of the child's actions."

I'm not sure I understand why a mother would be overly critical of her rainbow baby, but perhaps it's not for me to understand. All I know is I adore my rainbow baby, I'm no more critical of him than his sister, and that James has brought me more joy than I could have ever dreamed of after Ben died.

I know, without a doubt, just how damn lucky I am to have him. I wouldn't change him if I could and every day I say a prayer of gratitude to whatever gods there be that I have all of my children in my life.

For those of you who have had a rainbow baby, how do you feel about what this study says? Does any of it resonate with you?

Sunday, October 24, 2010

1,200 or 10,958

My husband and I started to watch a movie last night, and during the previews, an ad came on about the number of deaths each day in the U.S. due to cancer from cigarette smoking. Perhaps you've seen it.


I remarked to my husband, "That really isn't very many."

For something self-inflicted, he replied, it really is. And I suppose he's right, but you know where I'm going with this.

10,958 babies stillborn every day.

Why does no one make a commercial about that?

Saturday, October 23, 2010

Traumatic Experiences and Resiliency Study (T.E.A.R.S.)

Joanne Cacciatore, a leading advocate for stillbirth families and founder of the MISS foundation, is looking for individuals who have experienced the loss of a child, whether they be parents, grandparents, aunts, uncles, siblings, or friends, to participate in a study about resiliency.

From the T.E.A.R.S. website:

"We are a team of researchers from Arizona State University,  University of Nebraska-Lincoln, and Austin College. We are exploring the experiences of those aged 18 and older who have experienced the death of a child.  The second wave of the study will explore the experiences of those who have experienced the deaths of other significant people such as partners, parents, siblings, grandchildren, and others.

The purpose of this study is to determine the individual, familial, and societal effects of significant loss and to improve standards of care to the bereaved and a model of compassionate caregiving and intervention that fosters resiliency at every level.

You can now participate in the T.E.A.R. Study here!"

Friday, October 22, 2010

Thursday, October 21, 2010

The Grief Blog

A new-to-me resource for all who grieve the loss of anyone they love. Run by a mother-daughter team of psychotherapists, Gloria and Heidi Horsley. They have a blog, answer questions, run a weekly radio show and have all sorts of articles for dealing with the grief of losing a stillborn child, a parent, sibling, spouse, and more.

We can use all the help we can get as we travel this bumpy road.

Wednesday, October 20, 2010

Causes of Stillbirth

The causes of stillbirth are many. For some, like me, their baby will die because of a knot in the umbilical cord, or a cord wrapped around the neck.

For others, they will never know what happened, why their baby died.

If you look into it, do a Google search on stillbirth, you will find articles on an increased risk of stillbirth after IVF, after chemotherapy for childhood cancer, chromosomal abnormalities, gestation growth problems, placental abruption, on and on and on.

And as mothers, we blame ourselves. For not paying enough attention, for not knowing when our baby died, for not knowing something was wrong. But all of these things were out of our control. No blame required.

I know, without doubt, that we need to know more, have more research done, more studies, more warning signs identified. Until we have national momentum to eradicate stillbirth, we will never decrease these numbers. Until we have enough people who care, who call attention to the numbers, it will never change.

Tuesday, October 19, 2010


Sometimes, there is nothing to say, even when the grief is fresh and raw.

Some days, it is enough to sit with sorrow, let it wash over you until it smooths the rough places, much as the ocean does to the rocks and shells it pushes up on shore.

Some days, the sorrow is more of an ache, a presence, always there, but manageable, while other days it is a sharp blow to the gut causing you to double over with pain so intense you feel you might not manage it.

It can take years to process the grief, years to learn to live with it, years to realize that though it is part of you every day, not every day will be like the early months of learning to be without. The days when the sorrow was so intense it carved your insides out of your body, leaving you a hollow, aching shell collapsing inward.

It gets better, I promise you. The grief will lessen, and you will learn to keep moving despite it. You will begin to see the flowers again, notice the warmth of the sunshine on your skin. Even the guilt you feel for noticing the flowers and the sun will subside as you learn that life is still beautiful, still worth living for.

Yes, it gets better. But it will never be the same.

Monday, October 18, 2010

One Day

One day, you will wake up and realize you are still breathing, though moments before it seemed impossible.

One day, you will hear yourself laugh, then catch yourself, stopping short, gasping in sorrow. How could you laugh, after this? But laugh you will, and you will say a silent thank you to whatever gods there be, that such a thing is still possible.

One day, you will make a decision about the future of your life and know that it includes the sorrow you feel now, not that you have moved through, moved on, or gotten over it--simply that life includes all that you now know. That happiness and missing someone aren't mutually exclusive. The two can be combined, bittersweet, the knowledge of one tamping down the vitality of the other.

One day, you will realize that you have done the impossible: you have survived, simply because you are still here.

Sunday, October 17, 2010

Perhaps They are Not Stars

Perhaps they are not stars, but rather openings in heaven where the love of our lost ones pours through and shines down upon us to let us know they are happy.

      - Eskimo Proverb

Saturday, October 16, 2010

A Leave Taking*

I, who never kissed your head,
Lay these ashes in their bed;
That which I could do have done.
Now farewell, my newborn son.
     - by Yvor Winters
 *Found on the website MoreShortPoems.

Friday, October 15, 2010

Bitter and Sweet

This morning I had coffee with a friend who lost her son a year ago tomorrow. R. was stillborn at full-term, and they don't know why. My friend blames herself for his death, thinks she did too much in the last few months, didn't rest enough, didn't pay enough attention.

She is learning to live with a broken heart.

And though I can tell her it gets easier, there is only so much I can do, for until you arrive at "easier," it is only . . . hard. Some days are better, some days are worse, but one day you find you are still alive, still here, you haven't quite survived it--not so you could leave it in the past--but you are surviving it, here and now, moment by moment.

As she learns to live with her broken heart, she is trying to look forward, to believe that the child she now carries will be born, alive and healthy, in about six more weeks. I remember the terror she feels now, the guilt for having another child, the longing for both of her sons to be healthy and strong and alive. Knowing that will never be possible.

While I sat with her I thought of an acquaintance, in labor today, right now, at this very moment. Hoping that her innocence will not be shattered today, that her boy goes home, alive and well.

How hard it is, some days, being alive, knowing too much, fearing the worst, wanting the best.

For 10,958 mothers in the world, today will be the worst day of their lives. And for them, my heart is breaking even as I continue to hope for the women I know waiting to deliver their own healthy miracles.

This is life: the bitter and the sweet, sometimes so closely intermingled as to be indistinguishable one from the other. This is what it means to be alive.

Thursday, October 14, 2010

Stillbirth Outnumbers SIDS By 10 to 1

Midwifery Today has an article excerpt on their home page from Issue 74 of the journal of the same name. The article, written by Jeska Vannoy, discusses stillbirth, the lack of research into its causes, and the fact that the numbers of stillbirths are rising.

I find it so hard to accept that so little is being done to prevent and research stillbirth and its causes. Actually, I find it horrifying.

From the article:

"Unexplained stillbirth in late pregnancy is the single largest cause of perinatal death in the Western world. In the United States alone, approximately 39,000 babies of 20 weeks gestation or more died last year. Globally, 4.5 million babies never took their first breath. Sudden Antenatal Death Syndrome (SADS) has risen 20% in the last 10 years, despite "advancements" like 3-D ultrasound, increasing rates of labor induction and a rising cesarean section rate. These death tolls are estimates because stillborn babies aren't counted in any data on child death. Infant mortality rates in the US do not include stillbirth rates. Statistically, stillborn babies are not considered infants or children."

I also find it unfathomable that the 7 lb, 10 oz, 19.5" brown-haired baby boy who looked so much like my husband is not considered a real child. But I know that, for many people, Ben is simply a figment, a shadow, an almost.

But I did not feel him kick me for nine months, I did not hear his heartbeat, feel his hiccups, deliver him, to have someone tell me he was never real. I know differently. Had he not died, I would have carried him out into the world two days after his birth.

I wish the rest of the world knew that too.

Wednesday, October 13, 2010

Tuesday, October 12, 2010

Light a Candle on October 15th

Friday is Pregnancy and Infant Loss Awareness Day--sponsors encourage those who have lost an infant, or who know someone who lost an infant, to light a candle at 7:00 p.m. in their time zone to start a 24-hour wave of light.

I will be lighting a candle for Ben and Robertito, whose parents will be marking the first anniversary of his death the following day.

Who will you light a candle for?

Monday, October 11, 2010

How It Changed Me

I couldn't begin to tell you how many times I have wondered if those who knew me before Ben's death have noticed the change in me since. I wonder if that change I feel is pronounced or subtle, for though I feel the change to my very core, I know I've tried to hide it, to pretend as if I am better than I am.

For that is what I was taught to do.

And then I wonder how anyone could not notice the change in me, if they are paying the slightest bit of attention. But I also know how few of us pay attention, really, instead rushing about in displays of busy-ness that make us feel important, needed, useful. That fend off the loneliness.

Though I cannot begin to guess if anyone sees that I am different, I am.

I am older now, more weary. I have been someplace many people never go, for until you lose a child, there is no comparison, I think: no way to say, oh, my father died, so I know just how you feel. I don't think you do. You expect to lose your parents, just as you expect your children will outlive you.

Part of me died when Ben did. There has been some regrowth in that dead tissue, but mostly it is brown and hard, a scab and scar, tissue that will not heal. Never regrow. I suspect that if you sliced through my skin, near my heart, you could see that brown, mottled place inside; proof of damage done.

I am far more fearful of accidents and illnesses, of losing another child. There is almost nothing I take for granted any longer; an innocence has been lost, and I don't like it.

I am full of doubt. About God, fate, faith, what I believe. I've become a skeptic and, though I don't much like it, see no way out of uncertainty. And while I have my fair share of doubts about any kind of afterlife, I admit to jealousy of those I know and love who have died: why is it, I wonder, that they get to be with my boy now and I don't? It isn't fair.

Though maybe heaven, if it exists, doesn't work that way.

All my life, the only thing I will ever want again, is to be with Ben.

Can they see it on my face, the changes losing my son, birthing a dead child into the world, has made? I don't know. But they are there.

Sunday, October 10, 2010

Words From a Doctor about Stillbirth

Dr. Alexander Heazell, a clinical lecturer in obstetrics in the U.K., is one of us. The father of a stillborn child. And he wants the medical community, society, the world, to end the silence about stillbirth. 

In a recent edition of the British Medical Journal, Heazell writes about his son's stillbirth, noting that, in the UK, there is an average of 10 stillbirths daily, or 4,000 a year--which he points out is the number of babies one hospital might be expected to deliver in a year. He says such deaths are "under-researched and under-prioritized" because of society's reluctance to deal with stillbirth out in the open.

In an article I found on www.EmaxHealth.com, Heazell is quoted, “Thirty years ago, no one talked about cancer. Today the diagnosis and treatment of cancers is improving all the time. If parents are brave enough to speak, and doctors, midwives and policy makers courageous enough to listen to them, then the barriers to reducing the number of these deaths can be overcome. In time stillbirth, like cancer, will no longer be taboo, but a condition that’s openly debated, researched, treated, and prevented.”

Saturday, October 9, 2010

A Film About Stillbirth

I stumbled on information about a stillbirth film this week. The film, titled "Peekaboo," is in production in the UK. The production company, Big Buddha Films, bills itself as an "independent film company that focuses on making films with a strong female voice, that tackle human dilemmas, and show the vulnerabilities of human existence."

I'm not sure I can envision a film on stillbirth, and I'm not even sure I'd want to watch one. (Having lived through it is enough.) It's an interesting idea, however, and I think it might do some good to raise awareness.

Readers, what are your thoughts on a stillbirth film?

Friday, October 8, 2010

Babies Remembered

Sherokee Ilse, who is one of the foremost authorities on stillbirth advocacy in the U.S. (co-chair of the International Stillbirth Alliance, author of books and articles on stillbirth, president of Wintergreen Press, and much more) offers a (fairly new) magazine for babyloss parents, Babies Remembered.

Some of the topics she has covered include hospital support, Mother's and Father's Day, and dealing with the holidays.

The first three issues of the magazine are available on her website for free download; all issues after that are available for $12 on her site.

These are excellent resources for parents and families and another valuable tool for anyone dealing with babyloss.

Thursday, October 7, 2010

What If?

What if 5,479 teenagers died suddenly every day, for no apparent reason?

That number is half of the approximately 10,958 infants who are stillborn every day in the world. Approximately 50% of stillborn babies die without any known cause.

Do you think the world would sit up and take notice? Do you think doctors, medical researchers, governments would take action? Do you think there would be an outcry?

I do.

I also think the world would demand answers.

We are losing 10,958 infants to stillbirth every day. When, I ask you, will someone take notice and do something?

Wednesday, October 6, 2010

Stillbirth by the Numbers

If you're new to stillbirth issues, the numbers are shocking. To those of us who have traveled this road for far too long, the numbers no longer shock. They depress. They mystify--if the numbers are so high, why is there not more awareness, as there is for SIDS, for autism, for breast cancer? So here they are, the numbers of stillbirth, in black and white.

- there are 26,000 stillbirths in the U.S. each year
- there are 4 million stillbirths in the world every year
- there are 900,000 early pregnancy losses in the U.S. each year
- there are nearly 20,000 neonatal losses each year in the U.S.
- approximately 1 in 115 births will result in a stillbirth in the U.S.
- this equates to one stillbirth every 20 minutes
- in Australia, England, Wales, Northern Ireland, the rate of stillbirth is approximately 1 in every 200 births
- in Scotland the rate of stillbirth is approximately 1 in 167
- about 50-60% of stillbirths will never be explained

Tuesday, October 5, 2010

What Remains

This is what I have of Ben. A small wooden box of ashes.

A box that, at some point in their lives, and more than once, both of my living children have picked up, shaken, and asked me what's inside.

When I don't reply with an answer to their question, they normally say, "Sand?"

And I say, "Yes, something like that."

The other day James asked if we could open it, and I said no. "Why not?" he asked.

I replied, "Because everything inside would spill out."

"But you could put it back in again," he said.

How do you explain that this mysterious little box, so fun to shake and hear the "sand" inside, is what remains of the brother he will never get to know? How do you explain that his parents chose to burn the body of that brother so that, when we move from this place, we could take him with us?

I don't know.

There are so few answers to the questions that remain forever.

Monday, October 4, 2010

Searching for the Answers to Stillbirth

I came across an article written in March 2006 by journalist Suzanne Pullen of the San Francisco Chronicle and wanted to share some of it here with you. Ms. Pullen lost her son Avery in 2005 at 24 weeks.

She cites statistics I have mentioned in earlier posts and backs up my hope--the hope of stillbirth parents everywhere--that more research will be done into stillbirth. Here are a few excerpts from her article: (complete article can be accessed here)

"Searching for answers will provide little solace to many parents because so little research has been done on the causes of stillbirth -- classified by most in the medical community as the death of a fetus at or beyond 20 week's gestation. The efforts of many researchers have been stymied by the lack of standardized methods of reporting stillbirths and the collection of data from hospital to hospital, county to county, state to state. Fetal autopsies -- which are not covered by all insurance companies and have no national protocol -- are not required by law or hospital policy unless foul play is suspected."


"Stillbirth has been an extremely under-researched area," said Dr. Uma Reddy, an OB/GYN with the National Institutes of Health. "There is a huge gap in information."

Why? Why is stillbirth so under-researched? When will people understand that something needs to be done?

I spoke this morning with the husband of a friend. He and his wife lost their second child, a son, at full-term just one year ago. They don't know why he died. She is now pregnant with another son and they are, of course, terrified. Neither of them hail from the U.S.; both come from different European countries. My friend's husband, a scientist and Ph.D., told me how shocked he was at the statistics for stillbirth in this country. In their native countries cases of stillbirth are much, much lower. Why? He thinks, perhaps, medical professionals in their native countries have more awareness of the issue, pay more attention to risk factors.

Yes, it's anecdotal, but--what if he's right?

We can cut the numbers of babies stillborn every year down dramatically, if we, as a nation, only have the will.

What will it take?

Sunday, October 3, 2010

Shades of Gray

A few days ago I put up a post about the difference between stillbirth and miscarriage, after I had a friend refer to Ben's death as a miscarriage.

Several readers commented that, technically, their losses were somewhere in between a miscarriage and a stillbirth, in a strange gray area where there are no appropriate words in the vernacular to describe what they endured. Even though they had vaginal deliveries and saw and held their children. One reader's sons were born at 17 weeks gestation, within those shades of gray.

Another reader's son was born at 16 weeks gestation and took one breath. Only one.

And yet another delivered her twins in the UK, where a miscarriage is classified as a loss before 24 weeks. Her girls were delivered at 23 weeks. One of them lived, one of them died.

What can we learn from all this, you ask? I think we learn that there are few areas of black and white in this world, that we need compassion more than we need absolutes. We learn that loss takes many forms and cuts far deeper than many of us can ever know.

We learn that numbers mean almost nothing at all when faced with unfathomable grief.

Saturday, October 2, 2010

Online Advocacy for Stillbirth and SUID

I have posted this before and I will keep posting it until something happens. First Candle and the CJ Foundation for SIDS are partnering to have House bills HR3212 and S1445 implemented into national law in the U.S.

This is the Stillbirth and SUID Prevention Education and Awareness Act. This bill would "standardize investigations of stillbirth and sudden unexpected infant/childhood deaths up to age 4, create a national registry for these tragedies, track risk factors, fund public health messages and provide grief support services for families affected." (from First Candle's website)

Please go to First Candle's site and use their Online Advocacy form to write letters to members of Congress who have the ability to pass this into law and make a difference for the thousands upon thousands of parents who will experience a stillbirth in years to come.

Friday, October 1, 2010

National Pregnancy and Infant Loss Awareness Month

October is National Pregnancy and Infant Loss Awareness Month. It is overshadowed by Breast Cancer Awareness Month but, in my view (as the mother of a stillborn son and the friend, niece and daughter of breast cancer survivors--and victims), no less important.

In honor of Awareness Month, I am going to blog every day about stillbirth issues. (Although I might throw in a Wordless Wednesday photograph if I need a break from the sound of my own voice.)

I would love for my readers who have been hiding out to de-lurk, say hello, and tell me why you're here. Tell me who it is you are missing.