Archives for May 2012

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Support for Home Stillbirth

Mothers of pregnancy losses make up a demographic that is largely misunderstood and as a consequence, poorly supported.

Within this demographic, are different, smaller groups.  These groups have some very important things in common, but there are very important distinctions between them as well; because pregnancy loss as an entire demographic is so poorly supported, the lines between the groups within it can be magnified when they ought not be, and they can be blurred or altogether forgotten when they shouldn’t be.

To better equip others in supporting pregnancy loss mothers, stillbirthday, through our many resources and programs, introduces you to these different groups, why they are different, and what their differing – and similar – needs are.

This article discusses home stillbirth – mothers who have given birth at home to their stillborn babies.  This group of mothers is shared among three subsets:

Planned Homebirth – Known Fatal Diagnosis/Known Stillbirth

These are mothers who learn during their pregnancies that their babies have a diagnosis that is incompatible with life, or who were planning a homebirth but at some point in pregnancy, the baby died.  These mothers choose to birth their babies at home and coordinate medical and legal aspects to do so.  The second portion of our Home Stillbirth planning article gives information to mothers and midwives on how to utilize this birthing option.  This option is under-utilized as of yet; the legal process can frustrate homebirth planning for a known stillbirth or fatal diagnosis, and so if a mother is utilizing midwifery care and planning on a homebirth, her care may be transferred to a hospital prior to, during or after the birth. To make things simpler, if a mother has hired a midwife with the intent of a planned homebirth, regardless of transfer of care, we refer to it in this article as a home stillbirth.

Unexpected Homebirth – Unexpected Stillbirth

The first portion of our Home Stillbirth article gives quick information for this emergency situation.

Planned Homebirth – Unexpected Stillbirth

This subset is arguably the most controversial and difficult to discuss among homebirth midwives and mothers, but is the one  we will address in particular length here.  First, there are some basic things to know:

Homebirth is on the Rise

US home births

The National Center for Health Statistics, part of the CDC (Centers for Disease Control and Prevention) issued a report showing that between 2004 and 2009 the number of homebirths increased  by 29%, a rise of 0.56% in 2004, to 0.72% in 2009. In 2009, a total of 29,650 homebirths were reported in the United States. While these look like big numbers, however, the overall number of American women giving birth at home is on the rise, but still low: in 2004 only 0.56% of births were at home, rising to 0.72% in 2009.

62% of these homebirths reported in 2009 occurred in the presence of midwives. 19% of home births had a certified nurse present, and 43% of home births were supervised by other types of midwives, for example, direct-entry midwives or certified professional midwives. The study reports that a mere 5% of home births had taken place in the presence of doctors, probably because the majority of them occurred without notice.  Researchers have only just began analyzing data on this topic in 1989.  The rise in homebirths is attributed to many plausible factors, including the rise in Cesarean births and mothers seeking to avoid a highly medicalized birth if it can be safely avoided.

Midwifery, and CPM in Particular (see chart below)  is also on the rise

State Regulation Chart_APRIL 2012

There are Different Kinds of Midwives

For a number of reasons, midwives in the United States vary in their expertise, their education, their credentials, their legal status and the place where they can help a mother give birth. Knowing about the different kinds of midwives can help you be an informed consumer and aid you in finding and choosing a midwife.

Because Homebirth is on the Rise – so, too, is Unexpected Home Stillbirth

Each year in the United States, approximately 26,000 mothers give birth to stillborn babies.  With homebirth on the rise, it would simply make sense that some of these numbers will begin to move into homebirth statistics.

Although Homebirth is on the Rise, it is a Small Rise, and so Support for Home Stillbirth is Scarce

Remember this from the homebirth chart above: the overall number of American women giving birth at home is on the rise, but still low: in 2004 only 0.56% of births were at home, rising to 0.72% in 2009.  Stillbirthday blazes the trail and provides support now to these mothers and midwives.

Within the ‘Planned Homebirth – Unexpected Stillbirth’ subset, there is another divide

As if these subsets are not already at horrendous disadvantages for support and care, this particular subset is divided even further.  This is, in part, what makes planning and confirmimg your homebirth decision, so important.  When you find a provider to support you during your birth – whether it is a midwife or an obstetrician – it is important to know how they will support you in the event of a stillbirth.  Here is this next divide:

Planned Homebirth – Unexpected Stillbirth – No Negligence/Unpreventable

We are down to an extremely small demographic.  This group as a whole finds a small amount of comfort in the truth that “stillbirths happen in hospitals too.”  This is also the group within pregnancy loss that we can know for certain will follow the trends of homebirth – as homebirth continues to rise, it is a certainty that this group will rise with it.  Even so, this group is still very unsupported in many important aspects of their grief (the interviews below can shed a little light on this, although it comes from a mother who had a negligent midwife).  We all would hope that any unexpected stillbirth would be in the category of “no negligence”, but this is just not the case.  As healing as the sentiment “stillbirths happen in hospitals too” may be for this group, it is strikingly offensive and glaringly minimizing to the next group of mothers, which is just one example of the differences between these groups and why understanding each of them is so very important.

Planned Homebirth – Unexpected Stillbirth – Midwife Negligence/Preventable

We have begun with a growing but small number of mothers who choose homebirth, to those who experience an unexpected stillbirth, which is also a very small but growing number, and now down to the isolated group of mothers who find fault with their midwives relating directly or indirectly to the deaths of their infants.  It is important for this number to remain low.  But because it is so low, those who find themselves in this group are therefore the least understood, and as a result, the least supported.

Stillbirthday’s Official Statement: all mothers,  and all midwives, deserve grief support, whether there is negligence involved in the stillbirth or not.

The view of one negligent midwife

Stillbirthday obtained two exclusive interviews with one mother who found negligence with her midwife, and one midwife who separately admits she might have responded differently to one of her clients, prior to the stillbirth – these two do not know each other. Both share intimate details of their experiences with us, so that we can all glean wisdom from their darkest of hours and the haunting journey to healing afterward.

Stillbirthday asks the mother: The search for physical reasons/causes.  What has that been like for you?  Did you want to find any other reason other than negligence?  Why or why not?  Have you been “satisfied” with the “cause of death”?

Mother: When she initially passed away, I figured she had some sort of incompatibility with life defect. When my midwife gave us the newborn exam paper, we noticed several inconsistencies and went to the Detective about them. I knew a “midwife” in PA who was discussing our loss and the day of the funeral, my midwife was waiting on our steps when he ran home between the burial and luncheon. She was angry that other midwives were discussing this and the possibility of her being arrested. I did get angry with her. She would show up here and beg for me to not be angry. I remember her discussing her cancer and saying God sometimes does these things and reminding me how much she loved me and our family. Then, we got the death certificate. I called the Medical Examiner and discussed it with them. That began my descent into hell. I still frequently read things hoping that maybe, just maybe, that could be it instead. I feel that, if there had been a non-preventable cause of death, it would of been easier to accept, if that makes sense.

Stillbirthday asks the midwife: The search for physical reasons/causes.  What has that been like for you?  Did you want to find any other reason other than negligence?  Why or why not?  Have you been “satisfied” with the “cause of death”?

Midwife: It is a very strange dichotomy.  I of course never wanted to have fault found against my care, but I simultaneously of course never wanted the mother to live with the thought that there was something she did or that the death of her son was somehow something she could have prevented.  I am a protector of birth.  I want to protect the mother, and the baby.  “These things just happen” seems so trite and so minimizing.  In my situation, I believe it is important to point out that days passed before the mother expressed concern in a decrease of fetal movement.  Should the mother have called me sooner?  Should I have called her?  How do we live with what happened?  How do we assimilate this?  Is there fault–real liability–involved?  In this mother’s case there just wasn’t, but that doesn’t stop me from wondering.  Even now, years later, I still wonder.  I imagine that the mother does as well.

Stillbirthday asks the mother: How did your family respond to the death of your daughter?

Mother: Our families have been great. At first, my mother in law was angry with us. My brother blamed me. But everyone has come around and are all very supportive.

Stillbirthday asks the midwife: How do your loved ones respond when you have a professional loss?

Midwife:  I was very private about my feelings regarding this mother and her experience, which has been my only encounter with stillbirth.  I only shared my feelings with a couple of close colleagues.  One sent me a card; they both offered emotional support and helped me to honestly express my feelings without having to worry about it being misinterpreted, which was something I did fear.  My family was very supportive throughout.  I knew that this wasn’t my fault, even though a part of me maybe even almost wanted it to be–it seemed like it would make better sense, if there was someone to blame.  A part of me was also angry that the mother didn’t call me sooner.  It wasn’t her fault though, either.  This was tragic, and this was her tragedy, even though it greatly impacted me as well.

Stillbirthday asks the mother: What can moms possibly expect from their loved ones, and do you have any advice for them facing family after a homebirth loss?

Mother: Expect to deal with those who were against your decision to begin with, to be angry and possibly blame you. When you are facing that, turn to people who will support you regardless, giving you a safe grieving environment.

Stillbirthday asks the mother: Did you seek legal counsel regarding your midwife’s negligence?  What is that process like?  What legal support do moms have?  Does seeking legal support help or interfere with the grieving process?

Mother: We did seek legal counsel. However, we were turned away repeatedly due to the lack of insurance our midwife had. Honestly, most mothers, depending upon type of midwife, will either have some recourse legally or none at all. If your midwife does not carry insurance, you really don’t stand a chance.

Stillbirthday asks the mother: The search for spiritual reasons/causes.  What has that been like for you?  Did you feel punished?  Did you feel rejected or ignored by God?  Did you want to retaliate against God?  How have your feelings toward God evolved?

Mother: At first, I tried finding a reason why God would allow this to happen. We prayed and prayed and prayed. I would read books on grief and all they did was infuriate me. God could not give me an answer. That was all I wanted, just an answer. Yes, I felt punished for being so cocky and confident and so self-righteous. In time, I began relying on my Christian friends to help me through this and after a bit, I wanted nothing to do with Christianity at all. I began practicing an alternative religion then just couldn’t do it anymore. Slowly, I began getting back to who I was in my faith. Is it as strong as it use to be? Not yet, but I’m working on it. I still want answers, but I don’t know if there ever will be a good enough answer. I just have to take this and use it for good, make something beautiful come out of it.

Stillbirthday asks the mother: How did you feel about yourself as a mother during the initial grief process?  Did the death of your daughter challenge your belief in yourself as a mother?  Wife?  Do you have any advice for moms facing guilt/ blaming themselves for choosing to homebirth?

Mother: I felt like I failed as a mother, totally and completely failed. However, now, I feel that I am a great mother and even if she isn’t here, I’m a great mother to her. I, actually we as a family, WE keep her memory alive. We still spoil the crap out of her. We still talk about her. As a wife, I was scared to death that my husband would resent me for the choices I made. He never has and so I haven’t had to question myself as his wife. As for advice, I am still dealing with the guilt/blame aspect of grief. I know I didn’t choose to have the midwife mess up, but I still chose her. I don’t know what it would take in order to alleviate the guilt/blame. I want other moms to know it’s normal and it’s ok to talk about.

Stillbirthday asks the midwife: How did you feel about yourself as a midwife during the initial grief process?  Did your experience with stillbirth challenge your belief in yourself as a midwife?  Do you have any advice for midwives facing guilt/ blaming themselves or the mother?

Midwife: I was very shaken.  It was emotionally demanding, trying to soothe my own soul, while loving this mother through her many questions, fears, feelings, while additionally helping her transfer her care to a hospital, and helping her prepare to meet her stillborn son.  The enormity of the task is too difficult to even put into words.  I was afraid.  I was stuck in fear, and my fear shaped the support I provided.  It shaped the support I provided for quite a few mothers after her, as well.  I became almost obsessed with ensuring that mothers really understood about fetal kick counts, and that they understand that they can call me, for anything, anytime.  What is not the norm had such an enormous impact on me that, for a time, I perceived it as the norm.  My advice is twofold: establish trusting relationships with peers and colleagues.  Have someone you can run to and say, “I am scared out of my mind.  I am horrified that this precious child is gone.  How do I really–I mean,how do I REALLY–provide what this mother needs?”  You need to be supported.  Second, talk about death (maternal and fetal).  Stillbirthday is doing an enormous thing by talking about something that is so very taboo.  The truth is, we want it to be taboo, I think.  We don’t want to talk about it.  But, we just have to.

Stillbirthday asks the mother: What were the first days like?

Mother: I remember bits and pieces, so they were pretty much a fog. I had people helping us with the house and kids, but who it was and who had which kids where, I don’t remember. I remember going to the funeral home and doing ok until the director came in the room showing us the casket our baby would be put into. Never, in a million years, do I think I would be putting my newborn baby in a casket. That wasn’t what was suppose to happen. I remember taking in the burial outfit and how kind and warm the receptionist was. That has stayed with me. She told me she could feel The Lord in the room. That next day, we got to go see our daughter and do her footprints, both of us trying to pretend that we didn’t see the autopsy scars on her body. The next day, I remember getting angry at people who were arriving early because that was our time. I remember my brother in laws mother coming and I remember thinking, “she doesn’t know me and still came”. I remember being almost carried out of the funeral home after having to say goodbye. Then I remember having to leave her in the cemetery with the director. I slept when I was drugged up. When my husband returned to work, he made sure I always had a babysitter for those first few weeks.

Stillbirthday asks the mother: Do you think that a homebirth loss has a different initial grief reaction than hospital birth?

Mother: I do and I don’t. I think it would depend upon the cause of death. Having friends with preventable hospital losses, their feelings often seem to mirror mine.

Stillbirthday asks the midwife: Do you think that a homebirth loss has a different initial grief reaction for the mother than hospital birth?

Midwife: Yes, when it is an unexpected loss, absolutely.  I believe the mother is riddled with guilt, shame, and is haunted by horror and regret.  I believe this would be especially so if the baby died during the planned homebirth, which wasn’t my experience and so I can only speculate.  In a hospital birth, there seems to be more certainty, whether this is purely illusion or not.  The highly clinical environment gives the mother the sense that everyone around her is in control and knows everything.  It offers her a certain amount of detachment from the processing, I think.  She can be told what happened, and spend her grief working on accepting that or not, whereas with an unexpected home stillbirth, she is put into a different position of being one, likely feeling like the only one, really trying to make sense of what happened.

Stillbirthday asks the mother: Were there daily reminders that a mom might not have in a hospital birth, that played into your emotional response or grief?

Mother: Yes, my home was a huge reminder. Walking into the bathroom,  I could still see the medics sitting with me as I sat in the tub. I could remember the “exam” my midwife did in my bedroom. I took pictures of the kids with their sister in the living room. I remembered the medics running to the door and taking her out of my arms to the ambulance. Everything about that house was a reminder. I ended up redoing the house afterwards and then we just moved. When I drive by that house, it’s one huge flashback.

Stillbirthday asks the mother: Did you feel professionally supported in your grief in the early days?

Mother: I did. My doctor immediately put me on medication and let me talk.

Stillbirthday asks the midwife: Did you feel professionally supported in your grief in the early days?

Midwife: As I said earlier, I felt enormous fear.  I reached out to two of my sister colleagues, and received support from them, and from my family.  I didn’t receive support from any additional sources, although now in hindsight I believe I should have utilized additional support to really help me process my fear.  If it was a situation where the mother held me accountable for the death of her son, I might have felt forced to share my experience more publicly just so I’d know what to do.

Stillbirthday asks the midwife: Did you feel that you adequately supported the mother in her grief in the early days?

Midwife: I want other midwives to know that we can’t fully support a mother in her grief.  She needs a village of caring, heartfelt souls around her.  Her physical care needs tending to, but she also needs emotional and spiritual support.  While I say this, it is equally  important not to neglect the mother.  In our fear, and our own emotions, we can dread facing the mother again or being reminded of what is already haunting us.  We need to continue to provide care, and we need to enlist the help, discernment, wisdom and love of others who are connected to the mother.  We also need to be careful not to take support away from the mother to fulfill our own needs.  I heard once of a midwife, who was at that point acting as the doula, chatting away frantically at the hospital chaplain when he was there to speak with the mother.  We would be wise to imagine how our reaching for support is interpreted by the mother, whether there is liability, raising funds for legal aid, or anything else involved, because it can quickly appear as if it is us versus them, when that is by far the last impression we want to send.  We are for the mother.

Stillbirthday asks the mother: When a mother has a home stillbirth, where does she turn for immediate postpartum care, particularly if the midwife was negligent during the birth?  Who gives a postpartum depression screening (EPDS) or follow up care for the mother?

Mother: If there is a rush to the hospital, normally the doctors/nurses will offer to check mom out. I did not receive a PPD screen and had no OB followup care. When I saw my primary care doctor, like I said he gave me meds and let me talk, but I ended up getting worse and did attempt to put my van into a tree. He just increased the medication and I threw it out.

Stillbirthday asks the mother: How did you feel about your midwife during the initial grief process?  Could you walk me through the transition – when and how did it happen – when you went from trusting your midwife to realizing that there was negligence?  What feelings did you have?

Mother: At first, I did care about her and was trying to find a reason that she died. I did run a few by her and she was pretty ok with it. However, the lies and covering her behind began very early. My daughter was born/died on Thursday and Monday morning before the funeral is when my husband contacted the detective about the newborn exam paper. Finding out she lied was a kick in the teeth. We ended up with three different copies of the exam. Then, she was constantly emailing wanting to do this or that together and wondering if we had gotten anything back from the Coroner. Once we got the death certificate, I asked for my records, which were also falsified. You can see where she crossed things out and wrote in something new. When she learned we were trying to have a peer review done, she began emailing me, only being more persistent this time. I was furious that I trusted her, she failed, yet she was trying to manipulate us into standing by her and just accepting our daughter’s death. Learning her history and knowing that deaths/injuries are still occurring makes me see red.

Stillbirthday asks the mother: What was it like when you first shared your experience with those who support homebirth – those who encouraged you in your path to homebirth?  Did you expect the reactions you received from others?

Mother: They were supportive until I began speaking out after learning that this was due to negligence. They attacked me. I didn’t know what I was talking about. Sorry my baby died, but babies die in hospitals too. I had no right to project my feelings on to others, etc. It was like Dr Jekyl/Mr Hyde, as soon as I said one word not supportive of homebirth or midwives.  I don’t think I expected anger towards me. I did nothing wrong, yet, I have born the brunt of this. I hoped my “friends” would be angry that this midwife failed us. I hoped they would want to see some sort of accountability and see this not continuing to happen. I expected support and did not receive it.

Stillbirthday asks the mother: When other mothers share about positive home births, with live babies as the outcome, how does that make you feel?

Mother: I remember having a positive homebirth with a living baby, so I was in their shoes once. I hope, I hope, they never end up in our shoes. When these are risky births, I think to myself that they got lucky. Sometimes, I do wonder why they get a living baby and I didn’t. I did everything right and lost her.

Stillbirthday asks the mother: When other mothers share about homebirth that resulted in unexpected stillbirth, and they used your midwife, and they do not find your midwife accountable, how does that make you feel?

Mother: It does make me angry. I feel that not examining the entire labor/birth and the midwife’s actions just encourages these midwives to continue on causing more babies to die. It’s a real blow to find out that others allowed a midwife to continue and supported her in the losses or other infants under their watch. Part of me, almost wants to hold the parents, that allowed my midwife to walk away from their babies deaths, accountable. I don’t understand how anyone can let someone just walk away from accountability in their role in the death of a baby. It’s inexcusable. I have tried to get the word out, but I still feel responsible each time I learn about a death or injury under my midwife’s watch.

Stillbirthday asks the mother: When other mothers share about homebirth that resulted in unexpected stillbirth, and they used another midwife (not yours), and they do not find theirrmidwife accountable, does that become a factor to you in any way?  Do you doubt her?  Does it make you wonder?  Does that become a factor in reaching out to her?

Mother: There have been a few times where I have wondered but kept my thoughts to myself and just helped the mother. I have only even encountered a few women who had blatant negligence involved, and honestly, it makes me want to hit my head into a brick wall.

Stillbirthday asks the mother: When other mothers share about hospital stillbirth, and that they find their OB at fault, how does that make you feel? Do you feel that these mothers have better support than mothers who find their homebirth midwives at fault?  Why or why not?

Mother: I can sympathize with them and I do, totally. If their OB/nurses/midwife in the hospital messed up, I want to see some accountability and I try to give them the support they need to feel free to speak out. I don’t want them silenced. Their stories and losses are just as important as mine. I do feel that they are better supported than homebirth loss mothers, though. I feel this way because the homebirth/midwifery community behaves as if midwives can do no wrong. I’ve seen them supported unconditionally, meals made for them, rallies in their support, pledges of money, etc. We get NOTHING, yet it was our baby lost.

Stillbirthday asks the midwife: When mothers share about hospital stillbirth, and that they find their OB at fault, how does that make you feel? Do you feel that these mothers have better support than mothers who find their homebirth midwives at fault?  Why or why not?

Midwife: Obviously, I certainly don’t want stillbirth to occur anywhere.  I don’t think that mothers are very well supported wherever there is a stillbirth, and whether there is liability involved or not.  I would like to think that midwifery care provides more support for these mothers than obstetrical care, but that doesn’t seem to be the case.  There seems to be consistant support in hospitals: hugs, pamphlets, chaplains, some have staff on hand just for bereavement, and this is all whether there is negligence by the OB or not.  When the death occurs under a midwife’s care, I think the guard of fear automatically goes up for the midwife, whether there is negligence involved or not.  The midwife is more intimately connected to the mother than the OB is, so the loss is more intimate.  It’s personal.  The midwife is grieving, too, and I think there is a fear of interrupting one’s grieving process to support the needs of the other.

Stillbirthday asks the mother: In what ways has your perspective changed through your years of grieving?

Mother: I used to hate all homebirth and hate all midwives. Now, I’m fine with homebirth, but only with a CNM as their educations and training are sufficient. The CPM/lay midwife education/training here is highly inadequate. There is no professional behavior in the lay midwife world, at least not as a whole. I feel that things could be so much better for mothers and babies here if standards actually existed within the community. I still get tired of the same crappy comments and wish people would truly open their eyes to see the harm they inflict upon us. I’m even more resolved to change things. These years have shown me what I am working towards and helped instill such a passion and fire within me. I want to be able to forgive myself. I want to be rid of the guilt I carry. I have mothers ask me how they can help themselves deal with that feeling and I’m clueless. My determination began with speaking out against ALL midwives and all homebirth. Now, it’s towards ensuring safety. I do NOT want other women to walk this road. I wouldn’t wish this on my own worst enemy and if I can help prevent one loss, just one, then this fight is worth it. As for expressing and utilizing my grief, I guess my anger and passion does help carry me. I also open up and expose that wound to the world. These two sometimes gets me negative attention, but at other times, it’s totally positive. The advice I have to offer to a mom when negligence was involved- You are not alone. It is OK to question things. It is ok to question the midwife’s actions. It’s ok to step out and say “My baby should not have died”. It’s ok to want accountability. Every thought/feeling you have is normal. Brace yourself for the onslaught of those who did not support your choice to begin with. Please know it is not your fault (easier said than done) and those of us in this “community” will wrap our arms around you and support you as much as you need. We won’t make you go through this alone.  We will hold your hand through this journey. I’ve learned exactly who my friends are and who they’ve always been. I’ve learned who truly cares and I once considered it a curse, but it’s a blessing. God has helped prune these people from my life in order to make room for these beautiful people. I want to see beauty come from this and what’s more beautiful than a new mother with her new LIVING baby. I want them to have what was robbed of us.

Stillbirthday asks the midwife: In what ways has your perspective changed through your years of grieving?

Midwife: I used to “trust birth”, but that has evolved and now I “respect birth”.  Pregnancy is unpredictable and statistics are actually people.  Pregnancy and birth are beautiful seasons in a woman’s life, and even the birth of a stillborn baby holds a sacred, powerful place.  I think about that little boy and his mother and am reminded that nothing on this earth is perfect, pain can permeate the most beautiful of experiences.  We need to strive with everything within us to protect life, but when it slips past one of us, we need to draw nearer together than ever before, look into each other’s tear stained eyes, and whether there is liability, guilt, or blame, we need to–each and every one of us, mothers, midwives, doctors, whomever–determine to carry on the life lost in as dignifying, respectful, and honoring a manner as possible.  We will only do this through honest confession, complete forgiveness, and in loving surrender.  

[The photo of the baby during delivery was donated by a bereaved mother who received negligent midwifery care.  The owner of the photo, the mother interviewed, and the midwife interviewed, all shared important truths, voluntarily and anonymously, and are protected under stillbirthday’s submission information, which you may view if you have any objection to the things they’ve shared.  Highlighted aspects: both the midwife and the mother feel simultaneous guilt and blame, even as their grief has evolved.  They have both come to a place of identifying their multifaceted feelings.  Both have been changed by their experiences, and seek to help others be changed through their experiences as well.  Both have felt alone, terribly isolated, in fact, and seek to ensure that others after them do not feel this isolation.  Both have a powerful testimony and I am thankful to each of them for sharing.  It is their hope, as it is mine, that you will have learned something valuable about the importance of supporting others enduring home stillbirth.]

Stillbirthday aims to provide support to everyone involved and impacted by pregnancy/infant loss.  We have resources for providers as well as support for mothers throughout this site. 

Home Stillbirth is on the rise.  Stillbirthday rises to your needs.

You are not alone.

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We Want to see You, Grayson

Heather discovered in her 16th week of pregnancy that her son, Grayson, had Anencephaly.

Her providers gave her the option to terminate the pregnancy, but she and her husband prayerfully decided to continue with the pregnancy.  Heather says,

“My husband and I, we started prayer and we knew that God knew since the beginning of time that He had us for this.” (source)

Deciding to carry to term or not is the most difficult decision a parent could possibly face for their child – regardless of how they choose.

And yet, this is not the only painful choice a parent faces, when they learn they have a baby who has Anencephaly.  Recently, Private Practice aired an episode in which a mother gave birth to an anencephalic baby, and made the decision to donate his organs, raising the question, can Anencephalic babies be organ donors?

“Theoretically they can. In practice, there are certain problems. The science of organ grafting in newly-born babies is incipient; its medium-term results are not well known, whereas its  long-term results are not known at all. The organs of an anencephalic child can only be removed if the child has been  certified dead. However, the criteria that define cerebral death cannot usually be applied to children under 7 days old.  Before cerebral death is confirmed, the organs of such children may become so damaged that they are unfit for  organ-donation. Anencephalic children do not have a rear brain but they do have a forebrain which usually functions  normally at birth. The forebrain dies slowly and other organs may die in the intervening period of time. It has been  observed that clinical cerebral death (complete absence of reactions and reflexes and absence of spontaneous breathing)  almost always occurs after the heart has begun to fail. Therefore anencephalic children would only rarely be able to  donate organs. In some countries / states, the heart valves can be removed for use in a later transplant. The problems mentioned above  are less relevant because the valves can be removed up to 8 hours after the death of the child and are frozen until a  recipient is found. “ (source)

These are both huge decisions: to carry to term, or not, and to donate organs, or not.

And yet these are not the only decisions a family faces when they learn their child has Anencephaly.

A mother can choose breastmilk donation, have special photos of the birth, incorporate special Farewell Celebrations and utilize the help of bereavement doulas, and more, all available here at stillbirthday.

Heather wanted to validate the reality of her son Grayson James, by sharing his photos with her friends on Facebook.

Anencephaly is not easy to look at.  There is visible exposure, the shape of the baby’s head is visibly incomplete.  Without wearing a newborn hat, bonnet, or wrapping, it is very apparent that Anencephaly impacts the development of the baby’s skull and brain formation.  Parents must prepare themselves to see what is missing – what these parents discover, is that they do not need to prepare themselves for everything that is not missing – they see a baby, their baby, and they fall in love with their child.  They see their child as beautiful.  And then they may want to share that with others.  Because, their child is beautiful.

Unfortunately, Heather’s photos were removed- which means they were first reported.  Heather responded to Facebook,

“Dear Facebook,  All babies are beautiful blessings.  Where do you get off saying this angel is offensive?”  (source)

Heather and her friends continued to repost Grayson’s precious photos – but then Facebook put Heather on a 24 hour ban from the site.

Photos of Grayson do not violate any of Facebook’s community standards, which you can access for yourself but consist of the following:

  • Violence and Threats
  • Self-Harm
  • Bullying and Harassment
  • Hate Speech
  • Graphic Violence
  • Nudity and Pornography
  • Identity and Privacy
  • Intellectual Property
  • Phishing and Spam

Here is a slideshow of Grayson’s photos.  If Heather, his mother, wants to honor her son by sharing the reality of his condition, his short life, his real personhood, his impact on his family, his reach into the world, than we at stillbirthday stand with this mother to help make that happen.  We will carry you, Grayson, in our hearts.

We want to see you.
[youtube http://www.youtube.com/watch?v=HJuKJHx69sE]

Show Me Heaven

Told by: Jen

Jennyfur Angel, Due June 8th, 2002, Grew Wings December 26th, 2001 Glory Michelle august 17,2009 Baby Bean, September 10th, 2010 8.3weeks Sweet Baby Cantrell Jan 21,2011 (ectopic at 5 weeks) Poppy Feb 15, 2012 (ectopic at 4 weeks) due Oct 23,2012 and 10 unnamed Angels (ranging from 4 weeks to 12 weeks) Over the past 14 years, I have held 18 precious little babies inside of me. I have been graced by 3 of them here on earth. The other 15 have grew wings and found their home above in heaven with the Lord. Out of the 15 angels I have looking down upon me, I only knew the sex of one, had named her & started preparations for her arrival. Many years ago, I contracted an STD, Chlamydia. I had it for 5 years before I had been diagnosed, so it caused a lot of damage to my uterus. September 2001, I had become pregnant, things went rather well but we knew that I would have to be careful due to the fact that I was high risk. In the following months, things continued to develop smoothly. I went to the doctor in the early weeks of December to check on the precious child growing inside of me & find out that I was having a girl. I was never so excited. As I left the doctors office & got into my car, the song ” show me heaven” was playing on the radio. The perfect song for my sweet little girl. I decided that since my daughters father was at work & could not be there for my appointment, I would go to the local flower shop & purchase him a single pink rose bud. When I saw him that night after work, I handed him the pink rose, without saying a word. He knew right away what that meant. He was getting his little girl, whom he had always dreamed of holding. We decided that we would name her Jennyfur Angel, Her father wanted her to be named after me. I called her Angel, seemed like the perfect name for my gift sent to me from heaven. We started gathering items for her right away, bibs, shirts, her first blanket, anything we thought would be prefect for her. The week before Christmas I decided to start telling my family that I was carrying a little girl inside of me, because I had began to develop a bump that was getting hard to hide. Christmas came and I went to visit with family put of town for a few days. Things were still going great with my pregnancy. The day after Christmas, I had allowed my stresses and anger to get the best of me, I walked outside to gather myself & get a breath of fresh air. Not paying attention, I slipped on a patch of ice and fell, right on my stomach. I knew right away what had happened. I felt the sharp pains in my stomach. I had felt those pains before. I was rushed to the hospital to see if there was anything they could do but it was too late… my little angel had become exactly that. MY ANGEL! She grew her wings and flew above to heaven to be there with all of my other children. 2 months later, I again became pregnant… 9 months later I had my son, Austin. Austin was a twin, but twin B grew wings 2/19/02 while i was looking at the sonogram machine the heart beat just stopped. Even though it has been 10 years since my daughter grew her wings, I only began to cope with the pain in 2008. Not a day goes by that I do not think of her, there are still times that I can feel her moving around inside of me. Now that I have my 3 beautiful living children, I know that my angels are watching over me everyday. I cannot wait for the day that I can join all of my babies in heaven. I know that they went to heaven to make preparations for my arrival, the same way I was making preparations for Jennyfur’s. 9/12/10. I suffered yet another loss. I knew deep inside that I was pregnant but I wasn’t letting it known to anyone (even my fiance) until I went to the doctor.. my appointment was scheduled for 9/20/10 …on the 12th I started feeling a lot of pain .. I knew again what that meant so I headed to the hospital & texted my fiance (who was stationed in Texas) to tell him I was headed to the doctor and that I was having a miscarriage… this came as a shock to him since he had no idea I was even pregnant. We talked about it and decided together to name our sweet child…. Baby Bean … My fiance deployed Jan 10th 2011… I found out Jan 18th,2011 that once again… we were expecting… I was more terrified than excited because I knew that I still had an IUD in and what my chances of another miscarriage were. I wanted so badly to tell him that we were pregnant but before I ever got the chance… I ended up in the hospital on Jan 20th with severe pains… well… I had all reason to be terrified… it was an ectopic pregnancy! When I did finally get to talk to him the next day I not only had to tell him that I was pregnant but I had to tell him that the baby was gone… and most recently, my fiance came home for 3 weeks in Jan 2012… we really were trying one more time to see if maybe God felt it would finally be our time to have a lil one. I Found out early Feb that I was in fact pregnant.. due Oct 23 2012. We were so excited. Feb 15, 2012 I woke up bleeding so I ran to the ER to find out… once again… Ectopic! I am crushed! Right now I am just trying to grasp the concept that again I have another precious angel. We named this sweet angel- Poppy. The pain of all my losses has been hard, especially Jennyfur and Baby Bean and Poppy but it has made me a stronger person and I cherish the time I do have with my living babies!

Meaning of Mother’s Day

{Site Creator’s note: this was shared at our Facebook page, and it got such an enormous response that I am sharing this here, exactly as it was passed on to me.}

Real Meaning of Mothers Day By:

~Kara L.C. Jones~

“… let women now leave all that may be left of home for a great and earnest day of counsel. Let them meet first, as women, to bewail and commemorate the dead…”   ~Julia Ward Howe, Bosto…n, 1870

Mothers Day certainly stinks if your child is dead. In fact all holidays usually stink, but especially Mothers and Fathers Days which seem to be just made-up, hallmark-driven, commercial entities — those especially stink. I never had the energy to delve further than hallmark to learn about Mothers Day, never knew where it came from, nor why it is still celebrated with no sense of the tradition being mentioned.
Well, this year, to my surprise, I got a history lesson. A group of women on our small island decided that they didn’t want to celebrate and contribute to the capitalistic hallmark economy this year. They wanted to protest against violence. They wanted to express their maternal feelings for ALL children of any race, nationality, religion, gender, alive or dead. And they wanted to honor the power of that expression. So here in our little piece (peace) of earth, there was a parade, a small festival-atmosphere gathering at Ober Park lawn and playground. And they were spreading the ORIGINAL MEANING OF MOTHERS DAY AS JULIA WARD HOWE WROTE ABOUT IT AND ORIGINALLY VISIONED IT!!!!!!

What???? When they told me about this endeavor, I was so intrigued that Mothers Day had a real and meaningful history. I still was not able to bring myself to march with them and celebrate with all their beautiful, living children playing while I was smarting at the heart, grieving my dead son and my motherhood lost. BUT I had a much greater appreciation for Mothers Day, for history, for taking a stand against violence and war to save the world’s children. And here’s why:
In 1870, Julia Ward Howe wrote and published a protest against the carnage and violence of the Civil War — this was a protest led by WOMEN WHO HAD LOST THEIR SONS!!!!! It was bereaved mothers who started this!!!! Hallmark is WAY OFF the mark with the way this holiday is commercialized and propagated now, BUT in the beginning, this was a day of protest, an expression of horrified grief from bereaved mothers who were parted from their sons!! Wow. Okay. That’s a different spin.

So what did Julia have to say back in 1870? You read and see for yourself:   Arise, then, women of this day! Arise all women who have hearts, whether our baptism be that of water or of fears!
Say firmly: “We will not have great questions decided by irrelevant agencies. Our husbands shall not come to us, reeking with carnage, for caresses and applause. Our sons shall not be taken from us to unlearn all that we have been able to teach them of charity, mercy and patience.

We women of one country will be too tender of those of another country to allow our sons to be trained to injure theirs. From the bosom of the devastated earth a voice goes up with our own. It says “Disarm, Disarm! The sword of murder is not the balance of justice.”
Blood does not wipe our dishonor nor violence indicate possession. As men have often forsaken the plow and the anvil at the summons of war, let women now leave all that may be left of home for a great and earnest day of counsel. Let them meet first, as women, to bewail and commemorate the dead.
Let them then solemnly take counsel with each other as to the means whereby the great human family can live in peace, each bearing after their own time the sacred impress, not of Caesar, but of God.
In the name of womanhood and of humanity, I earnestly ask that a general congress of women without limit of nationality may be appointed and held at some place deemed most convenient and at the earliest period consistent with its objects, to promote the alliance of the different nationalities, the amicable settlement of international questions, the great and general interests of peace.
Julia Ward Howe   Boston 1870

HELLO!!!!???????? Mothers Day came as an answer to Julia’s proclamation. It started as a ceremony of bereavement and then as a movement for peace and action to stop the senseless deaths of children everywhere. Our society can commercialize all they want. Because in my heart of hearts I know the real meaning of this day came from pain, loss, and grief — the same things I feel on any given Mothers Day. And from now on, when people urge me to celebrate the day, I will tell them this:

 “I’ll celebrate with you as long as you will first mourn with me. It is the combination of the two that lends itself to the true meaning of Mothers Day!”

{And a THANK YOU Marybeth Pavese O’Donnell for sharing this at stillbirthday!}

Pregnancy Loss Support Survey

Pregnancy and infant loss mothers, stillbirthday wants your feedback.

May is Pregnancy Awareness Month here in the US, and so we here at stillbirthday would like to know, what have been the best – and worst – pregnancy resources that prepared you with loss information prior to your loss (so, while you were pregnant), and/or supported you during or after your loss.  If the resources you utilized while pregnant ever broached the subject of loss, we want to know about it – and how well they measured up!

To clarify: this survey is about the pregnancy resources you’ve ever used – not pregnancy loss resources.  How well did your pregnancy resources inform you about pregnancy loss?

To participate, please let us know about any resource within the following categories:

Pregnancy Books – BEST support

  • gave accurate facts, linked to support resources

Pregnancy Books – WORST support

  • gave poor statistics and very little information

Pregnancy Blogs – BEST support

  • felt connected, author was compassionate, linked to support resources

Pregnancy Blogs – WORST support

  • didn’t address loss at all or did so in a confusing and unsupportive way

Pregnancy Facebook Pages/Groups- BEST support

  • felt connected, page owner was compassionate, linked to support resources

Pregnancy Facebook Pages/Groups – WORST support

  • didn’t address loss at all or did so in a confusing and unsupportive way

Pregnancy Websites – BEST support

  • gave accurate facts, linked to support resources

Pregnancy Websites – WORST support

  • gave poor statistics and very little information

Pregnancy/Birth Methods – BEST support

  • instructor/method gave accurate facts, linked to support resources – do NOT submit the name of your personal instructor, only the name of the birth method/class

Pregnancy/Birth Methods – WORST support

  • instructor/method gave poor statistics and very little information – do NOT submit the name of your personal instructor, only the name of the birth method/class

You can submit as many votes as you’d like, for as many categories as you’d like.  Just leave a comment below, making sure you articulate which catories your votes belong to.  At the end of the month, I will fill in the categories so we can see which pregnancy resourses have the best- or the worst – pregnancy and infant loss support!

Flowers From School

written in honor of Bereaved Mother’s Day – May 6

She would be six years old.

Her mother would be waking early in the morning, to pack her a lunch and place her items carefully in a brown paper bag, folding the top over, and placing a heart sticker on the outside of the bag.

Her mother would tuck the brown paper sack into the pink, glittery back pack.

Her mother would help her pick out blue jeans with a pretty multi-colored butterfly pattern along the seam, and a purple shirt to match.

This mother would brush her daughter’s dark brown hair and tie it in pigtails with bright green hair ties.

She would see her daughter off to school, kissing her forehead and telling her that she loves her.

After school, the little girl would come bounding up the front steps, pigtails bouncing, holding a small plastic cup with a small, budding flower in it, just for her mother, with a heart scribbled in red on the outside of the cup.

“Happy Mother’s Day!” she’d say, as her mother would open the screen door, scoop up her daughter, and hug her in thankfulness.

That night, this mother would run her daughter a bubble bath, wash her hair with strawberry shampoo, and lay out Snow White panties and Cinderella pajamas.

The mother would brush her daughter’s dark, soft hair and the two of them would giggle together over something only mothers and little girls giggle about.

After the mother finished reading her a Bible story, turned on the princess night light, and tucked her into bed, she would go to the kitchen sink to finish washing the dishes, where the new flower, sitting on the window ledge above the kitchen sink, would cause her to stop and smile.

The very first Mother’s Day gift her daughter ever brought home from school.

Instead, she goes grocery shopping, and places the bags in the back seat of her car, where a booster seat with purple flowers on it and cookie crumblies crunched into it should be.

Instead, the refridgerator door is bare and shiny where sheets of beautiful scribbly artwork should be.

Instead, three feet above the floor level, the walls are all perfectly clean, where tiny smudgy fingerprints should be.

Instead of joining MOPS, she joins a support group.

Instead of calling her daughter’s Brownie leader, she emails her bereavement mentee.

Instead of going through her daughter’s bookbag to find a worksheet with a shiny gold star, and carefully placing the worksheet in a scrapbook for her daughter to treasure and to pass down to her own children someday, she opens her tiny shoebox sized container of items saved from the day her beautiful daughter was born…the day her beautiful daughter died.

Instead of dreaming of passing down her wedding dress to her daughter, she opens the tiny ziploc bag that holds her daughter’s first blanket, and quickly, she breaths deeply, trying to capture and remember every last detail of her daughter, before tightly shutting the bag again.

Instead of teaching her daughter how to write her name, she reads her daughter’s obituary.

Instead of her daughter bringing her flowers from school…

the mother….brings flowers….to her daughter.

While she wouldn’t have quite been six yet, this article is inspired by Mary Beth and her mother, Bambi. Bambi is a stillbirthday mentor and gave permission to use this photo to contribute to honoring all loss moms who’ve been walking this path of life after loss for years.
For those mothers who’ve endured bereavement for years, stillbirthday honors you.

Forever in Our Hearts

Told by: Robin

I was walking through the cemetery near my home in Kentucky recently and saw the tombstone of a child who was born and died on the same day. There was a stuffed Valentine’s Day bear sitting beside the grave. I stopped walking and began to cry; imagining the pain and heartbreak of the parents of that baby.  My own brother is also buried in that same cemetery. I walk by his tombstone day after day and I always look over at it; even though I try not to… The tombstone is a pinkish color so it’s hard to miss. Inscribed on the stone are the words ‘Forever in our Hearts’. My mother married at a very young age. She was only fifteen. She was only sixteen when she gave birth to her first baby; a boy she named after my father ‘Donald’. Anyway, when Donnie was only a few months old, my father came home from work to find my mother napping and my brother dead. My parents were told that their baby son died of SIDS. There was no other explanation. My mother put him down for his nap and he never woke up. I can’t even begin to imagine how my mother processed such a tragic loss; especially at such a young age. I can’t imagine waking up from a nap to find my baby dead. I can’t imagine… Sadly, my parents did not even have the money to bury their dead baby; my brother I never had the chance to meet and know. My Mammaw (mother’s mother) bought a burial plot so my parents were able to bury their baby properly. (My Mammaw is buried near him now. They are in Heaven together.) As I read through so many stories of loss on this site, I have been reminded of the loss of the brother I never knew. Back when this tragedy happened, there was no internet with loss web sites like this one. There was really no help at all; no place a mother or father could turn for help with their grief and heartbreak. My mother had to internalize her pain and find a way to go on. She does not talk about Donnie but I’m sure she thinks about him and ‘remembers’ on his birthday, death day and on Mother’s Day…

Now, my mammaw, she gave birth to five children but only two survived; my mom and her older brother (who passed away about six years ago). My mammaw miscarried one baby that was so tiny, she buried the baby in a large matchbox. The baby was buried on their farm. She also gave birth to another son and daughter; Russell and Sarah. Sarah was still- born and Russell died at 18 months. I did not realize that Russell was 18 months old when he died. I thought he was born dead like Sarah. My heart broke when mom told me he was one and a half when he died. He was walking and talking… he had the flu and the doctor gave him the wrong medicine. I can’t imagine… Sarah and Russell are buried near Donnie and Mammaw. They are all in Heaven together. Mammaw has been reunited with all of her children now except for my mom.

My mammaw lost her own mother when she was just a young girl. She raised her two brothers. Her life was so difficult but you would never have known it from the way she carried herself and reached out to others, always helping others when she was in need herself. She taught first and second grade up until I was in junior high school (the mid-seventies). She gave to others when she was in need herself. That was ‘normal’ to me and what I was taught we are to do. I can remember her always saying no matter how difficult any circumstance “God takes care of His own”. She was truly a woman of God. I’m so thankful for a godly heritage that came down through my precious mammaw. I learned so much from her about God, about life and about how to love others more than myself.

The SBD® Doula provides support to families experiencing birth in any trimester and in any outcome.

Here at stillbirthday.info, you can learn about the SBD® Doula.