M.E.N.D. (Mommies Enduring Neonatal Death) is a Christian, non-profit organization that reaches out to families who have suffered the loss of a baby through miscarriage, stillbirth, or early infant death…

MEND offers support groups and services both internationally and nationally. Based in Dallas/Ft.Worth Texas, MEND was founded by Rebekah Mitchell.

International Services Include:
• Free Bi-weekly newsletter
• Online support forum
• And numerous resources provided through the MEND website.

Nation Services Include all the services listed above including:
• Local chapter peer support groups (visit links for contact information and maps.)
  • MEND Home – Dallas/Ft.Worth
  • Arkansas – Northwest
  • Georgia – Atlanta
  • Kansas – Emporia
  • Missouri – Springfield
  • Oklahoma – Tulsa
  • Texas – Houston, Hill Country, Texarkana

Please visit mend.org to see their resources, special events or to make a donation.

What do you enjoy most about MEND?

Subsequent Pregnancy After a Loss Support (SPALS) is a closed email-based, community support group that has given thousands of grieving parents a safe and compassionate forum to connect and share experiences with others who know the depths of grieving a child and the fears associated with subsequent pregnancy. Whether you have experienced “the loss of a child due to miscarriage, selective termination, stillbirth, neonatal death, sudden infant death, or accidental death,” SPALS offers an extremely active and supportive community to those currently pregnant, trying to become pregnant, or contemplating trying again after loss.

How active and supportive?

Very! Within moments of my wife posting her first email to the group there was an outpouring of support from members all over the world letting her know that we were not alone. It has been over three years since that first email and I can tell you the momentum and strength of the group hasn’t slowed a bit.

Shortly after the passing of her first child, due to severe preeclampsia and HELLP Syndrome, Sarah Grimes Founded SPALS in December 1995. Sarah is still very much a part of SPALS and is one of two list administrators.

Sarah shares her experience “The Life and Death of Haven, our Beloved Daughter.”

Conclusion

SPALS is a wonderful support group that has been a tremendous resource. Its members have helped us through some of the darkest times. There are many support groups out there, but SPALS offers an atmosphere of intimacy and privacy that is very comforting and reassuring.

Useful Links:

• SPALS Home – Subsequent Pregnancy After a Loss Support
• SPALS Faq – Frequently asked questions
• Join SPALS – Join SPALS now
• Sarah Grimes – For general enquiries and history of SPALS

Do you have a story to share about SPALS? What would you tell our readers looking to join a support group? What support groups have you found most helpful?

Here is a story I found today about an organization called Sands based in the UK who is calling on Scotland’s Government to ensure that stillbirths and neonatal deaths are recognized as a “major health issue and addressed as a matter of urgency and priority.”

Posted via web from hanamiprints’s posterous

A recent study published this week reveals that most hospitals, maternity care staff and physicians are insensitive in dealing with women experiencing pregnancy loss – probably not an unexpected finding to anyone who has lost a child through miscarriage, stillbirth or perinatal death. The study was conducted by the Association for Improvements in the Maternity Services – Ireland (AIMSI) and focused on women having miscarriages. Those surveyed reported receiving care for their miscarriage on the labor and delivery floor, right next to women at the end of a long pregnancy about to give birth to a living child, God willing. One of the respondents reported being traumatized by hearing the sounds of a busy delivery room as she was dealt the news she would lose her tiny baby to miscarriage.

Although the subject of the article centers on the mishandling of miscarriages, it brings back nightmarish memories of my own labor and delivery story – the silent birth of my first child, Nicolas, one week after his due date. After waiting patiently for 41 weeks, convinced we were out of the “danger zone,” i.e., the first trimester (oh, how naïve I was then), we went to the hospital on February 28, 2006, excited that labor had finally started, only to be told our son had “no heartbeat.” Lying next to me in the same room were two other laboring women, hooked up to Dopplers, the strong swoosh, swoosh, swoosh of their babies’ heartbeats echoing along with my sobs. I was finally taken to a private room and given Pitocin as my labor slowed. I was told my contractions stopped because usually babies help progress labor, but in my case… I wanted to tell them Nicolas wasn’t being difficult – he was dead.

I labored for about 23 hours, thankfully much of that time lost in a fog of pain and shock. But every now and then, from another room down the hall, the sweet, mocking sound of a newborn cry and the cheers of nurses would creep into my consciousness. Every now and then I would hear that strong swoosh next door and realize my nurses didn’t even bother to put a heartbeat monitor on me. The following day, in my recovery room, a nursing assistant came in with an sunny smile on his face and told me it was time to take my prenatal vitamin. I had just given my son’s body back to the nurse for the final time and was in no mood for false cheer. As he left the room with that damn pill still in the little Dixie cup, I glimpsed just outside my door a new mom and dad with their breathing baby bundled in an infant carrier, ready to go home. I could take no more and demanded to be released. I was given a prescription for Motrin for the physical pain and two anxiety pills for the emotional trauma that lie ahead (they were concerned I would take all the pills at once, so I only got two). The pharmacist congratulated me on the birth of my baby as she handed me my prescriptions, and all I could choke out was, “thank you.” My husband pulled the car around, and I climbed in, Nicolas’ empty car seat in the back. We went home and shut the door to Nicolas’ waiting nursery.

I wonder now if my experience would have been better if I were quietly taken to a room far enough away from the “normal” labor and delivery floor so I wouldn’t have heard those Doppler heartbeats and newborn cries, so I wouldn’t have seen living babies next to my dead son. I wonder if it’s asking too much to be treated respectfully but separately from other laboring women, to be handled a bit more sensitively and to be spared those painful reminders of what I would never have with Nicolas.

Earlier this month, the Arab Emirates 7Days newspaper reported on a case involving a young Lebanese mother who was found guilty by a Dubai court of causing the death of her full-term, unborn child. The mother was driving home one day in October 2008, just four days before her scheduled Cesarean section, when she unintentionally struck the vehicle in front of her. The drivers of the vehicles sustained minor injuries, but the baby’s umbilical cord was severed in the accident.

The head of Dubai Traffic Prosecution was quoted as saying the verdict would serve to protect unborn babies: “The mother is responsible because she didn’t protect her baby. She hurt her baby when she caused the accident. We want all pregnant women to avoid driving unless it is necessary, or it is an emergency situation. They need to protect their baby and sit in the back.”

When my son died at 41 weeks of pregnancy, I suffered with terrible bouts of guilt. After all, what is a mother’s primal purpose but to protect her unborn baby? I blamed myself for not sensing something was wrong, for trusting medical providers who turned out to be negligent, for not demanding my son be delivered before his due date, for studying almost every possible pregnancy complication but velamentous cord insertion, for not seeking a second detailed ultrasound, for forgetting to take my prenatal vitamin a few times, for not questioning my midwife when she told me it was perfectly normal to stop gaining weight at 32 weeks of pregnancy, for not asking what my fundal height was at each prenatal visit as I later learned Nicolas had intrauterine growth restriction, for believing my midwife when she said I couldn’t possibly have preeclampsia despite my dangerously high blood pressure, and for hundreds of other things.

Mostly, I blamed myself for living while my infant son died.

Every mother of a child who dies struggles with tremendous guilt. And to have your child die inside you – where he is supposed to be nourished and protected – brings a guilt and a grief like no other. I cannot imagine the torment this poor Lebanese mother is experiencing to be condemned by a court of law of failing to protect her baby and causing his death. As an American, it is easy for me to say that Dubai, like many Middle Eastern countries, is inherently misogynistic and is using this tragic event as a way of pushing women into the backseat, of reneging on the few hard-won rights granted to women in their country. But for this mother who lives everyday under these rules and culture, an official condemnation – official proof of her guilt — must be an impossible thing to live with.

It has been over three years since I lost Nicolas, and on most days, I do not struggle with guilt or blame myself for his death. Although I still wish with every fiber of my being that Nicolas had lived, I understand now that I did my best for my son given the situation. None of us, including the Lebanese mother, intend for our babies to die – none of us would knowingly cause harm to our unborn children. It is a sad truth that we cannot protect our children in all situations. The unexpected and the catastrophic happen everyday, despite our best intentions. The guilt we feel when our children suffer from tragedies beyond our control is proof of the deep love and responsibility of motherhood. Guilt is part of being a mother.

Governor Sarah Palin this week signed a bill into law enabling grieving parents in Alaska to apply for and receive an official birth certificate for their much-loved and much-wanted stillborn babies. This seemingly simple bill has, once again, ignited a firestorm of controversy among opposing sides of the abortion debate. Any mother who has labored for hours, often more than a full day, or had her uterus cut open in a last ditch effort to save her baby’s life — only to bring forth a dead child — has been through enough trauma without becoming the rope in a tug-of-war between the liberal left and the conservative right.

Pro-choicers vehemently oppose any language that would grant the status of “human being” on an unborn child, regardless of gestation — four weeks or forty weeks, it doesn’t matter. Until there is no longer those few inches of mom’s flesh between child and the outside world, pro-choice advocates need that baby to be called “fetus.” It’s a slippery slope of legal jargon. Admitting that a baby who makes it to 20 weeks gestation and beyond (the medical definition of stillbirth) is an actual human being may, over time, lead to the legal definition of a fertilized egg as a human being as well — thus effectively illegalizing abortion. I read a pro-choicer’s comment today who said, “one problem: you can’t be born if you’re dead.” I imagine he was speaking metaphorically because, as a mother who went through 41 weeks of pregnancy and 23 hours of a labor, only to push out a dead son, I can assure you it is quite possible for a baby to be born after he dies. In fact, the physical process of labor and delivery — the unrelenting contractions, the uncontrollable shaking and increase in blood pressure, the utter exhaustion from pushing your baby through the birth canal, the tearing and ripping of your flesh — they are the same whether the baby is alive or dead. I have given birth twice: once to a dead baby and once to a living baby. It was the same process both times.

The pro-lifers are no better than their antagonists on this issue. Rather than sponsor this type of legislation out of a legitimate concern for grieving parents, they use it as a poorly veiled attempt to further their political agenda. They see our tragedy as a vehicle for changing the legal definition of a fetus, which would, of course, hasten their goal of illegalizing abortion. Pro-lifers are announcing Palin’s signing of this Alaska state bill into law as a “respect for the sanctity of life.” While I would never argue that my stillborn son, Nicolas, is undeserving of such a description, I can’t help but be irritated by the pro-life advocates’ choice of words — the same words they use to argue against abortion. Their announcement smacks of a political poke at pro-choice advocates, which makes their seeming support of grieving parents insincere at best.

Something as simple as a birth certificate for stillborn babies to recognize the fact that the mother still gave birth and her child was real, even if it is termed a “Certificate of Birth Resulting in Stillbirth” in an effort to pacify the temper-tantrum-throwing political left and right, should not be such a controversy. I mean, really, who but the grieving parent should care?

This fight has nothing to do with us. Take your political agenda somewhere else.

A study into the long-term consequences of the death of an infant on surviving siblings has recently been published. While the focus of the study involved infants who died in the neonatal intensive care unit (NICU), it seems the implications can also explain the affects of stillbirth, as well as the death of older babies, on living siblings. One of the most interesting findings shows that regardless of when the baby died – either before or after the surviving siblings were born – there was no change in how the living brothers and sisters dealt with the loss.

I have often wondered how Nicolas’ death will affect my living son, Christopher Nicolas, who was born three days shy of Nicolas’ first birthday in February 2007. My need to honor and celebrate Nicolas’ memory through displaying his photographs all over my home, lighting candles on important days, wearing special memorial jewelry – and simply speaking his name – has at times competed with my need to protect Christopher. My instinct tells me Christopher will be a better person for having known his brother, if only through my memories. But I worry that introducing the concept of death, and that death can happen suddenly and unexpectedly even to healthy infants and children, will be a lesson on the cruelty and unfairness of life – a lesson Christopher should not have to learn at such a young age.

I was relieved to read, at least according to this study, that creating rituals in celebration of the baby who died – sharing photographs and memorial keepsakes, participating in family traditions to honor birthdays and holidays – establishes a symbolic link between siblings and connects them in healthy ways. Surviving siblings who grow up celebrating the memory of their deceased baby brother or sister experience fewer negative consequences and feelings than those whose parents kept their grief for the baby private. Parents who try to shield their surviving children by never speaking of the baby who died ironically cause more trauma in the long term.

Death Of A Child In The Neonatal Intensive Care Unit: Long-term Consequences For Siblings
ScienceDaily (2009-04-06) — Little is known about the long-term effects of the death of a child in the neonatal intensive care unit on survivor siblings. These siblings may encounter unforeseen emotional difficulties and developmental consequences that can occur whether the siblings are born before or after the infant’s death. … > read full article

Every year around the world, more than 4.2 million babies die between 20 weeks of gestation and the first four weeks after birth. One million babies die from premature birth, while another 3.2 million are stillborn – the majority at the end of pregnancy during labor and birth. The remaining four million children who manage to survive pregnancy and labor end up dying during the first four weeks after birth. In 2006 my otherwise healthy son, Nicolas, was one of these statistics. Stillborn at 41 weeks during labor from undiagnosed velamentous cord insertion and possible vasa previa, preeclampsia and intrauterine growth restriction – all easily managed pregnancy conditions. The fact my healthy child lived and thrived for 41 weeks only to die during early labor still enrages me to this day.

Despite the magnitude of stillbirth and neonatal death, little attention is given to these most vulnerable of patients – not to the medical causes of their deaths or to the facts of their deaths and the devastation their loss brings to the families. The Global Alliance to Prevent Prematurity and Stillbirth (GAPPS), based out of Seattle, Washington, is one of the few organizations working to raise awareness, find causes, and prevent these deaths. The sobering statistics above were taken from their website. Please visit their website for more information and spread the word about this wonderful organization: http://www.gappsseattle.org/.

In the months after Nicolas died, I scoured the Internet for information: medical information on the cause of his death, statistical information on how many babies die in this way, grief information on what to expect next, and support information on how to live without my son. I became intimate with a world I never knew existed, a world of mothers, fathers, grandparents and siblings struggling with the impossible loss of a child. I spent countless nights until four in the morning reading stories of women like me – women who couldn’t sleep, couldn’t eat, couldn’t do anything but read stories of women like them. I noticed a common theme: many mothers referred to their children as “angels,” especially when their children died as infants or toddlers. Whether Christian, Buddhist, Muslim, Jewish, Atheist or Agnostic, it didn’t seem to matter.

I resisted the temptation to give Nicolas this name. I imagined myself years from now, an old woman, no living children, no grandchildren, just a curio cabinet full of winged figurines supplicating in the most uncomfortable positions. It seemed too easy, too obvious, to call my infant son an angel. Yet, I was at a loss for what else to call him. I’m not talking about his given name; I am talking about a metaphor for my dead baby that softens the shocking sound of “my dead baby.” Something that helps me cope with his unfair and unimaginable death. “Angel” has become my cushion.

I now accept and even embrace my chosen metaphor for Nicolas. Nicolas was as close to perfection as is possible. When he was first born, I was absorbed with his silent, gentle presence. I felt the hush of the sacred in the delivery room. I hesitated to touch him for fear of disturbing his purity. Nicolas did not live long enough to keep me up all night with his colic, throw his Cheerios on the carpet, play his music too loud, or put a dent in my car the first time I let him drive it. He did not live long enough to secure his place amongst the fallen ranks of humanity like the rest of us. Nicolas slipped silently into this world from a place of perfection, lingered a moment, and then slipped silently back into the dark. For me, no other word but “angel” can describe Nicolas.

I don’t own a curio cabinet or a porcelain angel – not yet.