pregnancy_loss (1)

Sometimes, one meets people at the right time for the right reasons. On a recent vacation in Arizona, I went on a solo hike in the mountains. I usually keep to myself when I hike alone, but for some reason, as I rounded a corner and he did too, we started to talk.

We talked about hikes, and camping and canoeing in the North East, where we are both from. "He" turned out to be David Ilse, and I marvelled at meeting someone who's last name was the first name of my grandmother, and my middle name.

As he turned to leave, after we exchanged numbers because he kindly offered to lend me some camping gear, I uncharacteristically asked a personal question- what sort of work did his wife do? He answered something along the lines of she was an author, and travelled the world talking about, and training other professionals, to help parents cope with and heal from pregnancy loss.

This stopped me in my tracks. I quietly said that I had had several miscarriages. I don't really remember what was said after that, but we each went on our way. I hiked and sweated up the trail until I got to the river that was the end of the trail. I followed the river upstream, past the usual path, and rounded a corner to a scene out of an enchanted land: smoothed-out rocks forming a sort of channel, through which water flowed, and fell to form a small waterfall, which ended in a beautiful pool of clear water. No one was around, so of course I took full advantage of it and bathed in the desert pool. I was in some sort of magical place, physically and spiritually. For years, I had not even thought of the miscarriages I had. Now, in the desert, under the waterfall, I re-lived some of those experiences, and felt cleansed as the water fell over me. I lay on the sandy edge of the pool with the sun shining down on me, and I cried and I grieved for those babies I had lost.

Twenty-one years ago, I had birthed one healthy baby girl. Over the next several years, I had had four miscarriages. Doctors didn't have any explanation to me, nor had I been offered any mental health support. Those miscarriages were somehow seen as insignificant to my supposed caregivers. The full impact of those losses was somewhat blurred as I then faced my husband's diagnosis of cancer, which took precedence over anything else in our lives.

On that hot day in Arizona, so many years later, I finally said goodbye to my babies. At peace, I fell into a calm sleep for a short while.

A few days later, I had the privilege of going to the Ilse's home, and Sherokee and David welcomed me as an old friend. She told me of her personal journey, of having a miscarriage, a boy who was stillborn, and an ectopic pregnancy. She talked to me about her need to share her experiences with others, so she wrote Empty Arms in 1982. This book has been revised and reprinted numerous times, and has sold over 350,000 copies. Sherokee has since written many other books, and she travels the globe, consulting and training others, including Baby Loss Family Advisors and Baby Loss Doulas.

I talked with Sherokee, and asked her to tell me how mothers (and fathers) can cope with the loss of their baby, and how healing can eventually happen...

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Me: What was the purpose of writing Empty Arms and how is it used today?

Sherokee: After our son Brennan William died and then was birthed in a hospital the day after his due date, we made decisions with no guidance or knowledge of how to meet him, love him up, and work towards our goodbyes. Within about 5-10 minutes we gave him to the nurse and we never saw him again. We did almost everything wrong. No footprints, lock of hair, pictures, bath time, cuddling, or sharing him with our family. No one in our family ever saw him and without pictures there really was no way to show he existed. We had nothing except a short little hello.

The regrets are haunting and never really go away. It was such an incomplete experience, one that did not help our hearts heal. And then I realized we had done the same thing with our first miscarried baby. Emptiness and anguish went deep and few people understood the depth of love and heartache we felt. I named that early miscarried baby Marama, a name I had saved up for our first girl. David did not think of this baby as a girl and did not feel comfortable about naming him/her. So we agreed to disagree, allowing me to do what I needed to do. Then after our two living children were born, we had an ectopic pregnancy and I named her Byrna.

The only thing I felt I could do was bring some light to others by helping them from making the same mistakes. Otherwise, what was the purpose of their short little lives. They could not make the world a better place and create their own legacy. Only David and I could do that.

Within a month after Brennan's death, I wrote the first draft of Empty Arms as a self-help guide to empower, teach and touch parents soon after learning their little one has died or will die. I dreamed that this small book, written in a very simple, loving manner, would be given to each parent soon after hearing the devastating news. If they read even just the 'Decision-making' section right away, they could be supported to make decisions that would lead to maximizing memories and minimizing regrets. This seemed to me to be the path toward healing. I continually update the book and publish/distribute it myself through my company Wintergreen Press. And I created a support organization called BabiesRemembered.org which offers specific help, guidance, resources and literature to bereaved families and their care providers.

Me: It seems that miscarriage and other baby losses is still an underground experience, barely talked about our society. Little support is given to families after a miscarriage. How can we better understand this and what can be done?

Sherokee: Yes it is true. Sadly. While it is not easy to understand why, I have some thoughts about it and a challenge to everyone reading this.

When do prospective parents begin to bond and love their baby-to-be? At the time of a positive pregnancy test, during an ultrasound, when the baby is born? Yes, these are key times in the journey to parenthood. However, what do young children play (especially little girls) ? Mommy, daddy, and baby. They play 'house.' This is the beginning of that journey. Might it be there are many years and milestones that lead up to having a baby. Could it be that it all started in childhood? Love is already there for many who equate, "I'm pregnant!" with "We're going to have a baby."

So when those parents have a miscarriage, it is clearly the "loss of a lifetime of dreams, hopes, aspirations. A slice of their future simply vanishes overnight." (from the poem Miscarriage, by Susan Erling Martinez). They deserve support, comfort, compassion, and opportunities to make memories, share their feelings, and be allowed to grieve.

This is not like merely having a medical procedure for most parents. It is not the loss of a set of keys or even a beloved puppy. It is worse, far more significant and sadly, too often entirely misunderstood by the medical professionals caring for them and their family and community…which makes it worse and more painful. When people deny these parents the right to mourn the little lives that were to change their future so dramatically, confusion and anger abound. Parents may wonder, "Why do I feel so badly when everyone acts like it is no big deal? Is there something wrong with me?" or " Don't they care enough about me to realize that I am devastated and so very sad and empty?" The mixed messages and sense of loss definitely add to the hardship and anguish after a miscarriage for many, though not all.

With the normal reaction of shame and guilt, come feelings that our body failed this little child one. We can wonder what we did, or did not do, to cause such a tragedy. And the pressure is great from others that we should 'just try again.' As if this little, unique life can be easily replaced. Whether this was a first try or an expensive infertility treatment that resulted in the loss of their baby, no other child can replace the one who died.

What is hard about a miscarriage where there is no body to see (because the D & C or D & E procedures result in blood and tissue), is that little affirmation comes that this was a baby. Pictures are rarely taken (though they can be…sometimes there are limbs to see or some of the baby is intact) and memories, especially good ones of meeting and holding the baby, are missing. here needs to be validation that this was a real baby who was alive. Though their son or daughter died too early, parents still hold the dreams and the love in their hearts.

A mission for changing the paradigm of how we handle families who have a miscarriage has been on my heart for decades. Every time I teach professionals about how to enhance their care of families, I include miscarriage. I ask for more understanding, awareness, and genuine compassion for families experiencing miscarriage. And each time I speak to families experiencing loss I include all babies, even ectopic pregnancies and a blighted ovum. Medical definitions should not define whether love is present or not, whether this is or isn't a baby to families. Rather, we each get to give our own meaning and have our own feelings that follow loss.

My challenge to our readers: The conspiracy of silence and the conspiracy of the minimization of miscarriage needs to end. Loved babies don't come in certain sizes. Nor are they defined as special enough to be grieved by the length they were known to parents. These are sons and daughters whose lives were cut short. They will be missed. Forever.

It is past time to:
  • raise our level of consciousness and awareness about what really happens to parents emotionally and spiritually
  • affirm parenthood and the love parents hold for this baby in their hearts (no matter how small the body or short the pregnancy)
  • recognize and be gentle when parents express that this is the loss of a baby
  • learn about the dreams and plans they had for this baby and their lives going forward
  • honor these little names and memories, which can help parents in their grief journey
  • offer to sit with them and listen
  • make or buy baby and/or mommy and daddy gifts, despite the loss and because of the love
  • remember them on due dates, birthdays, holidays, and anniversaries
  • move beyond our own uncomfortableness and grow in courage and compassion as we reach out, even though it is not easy
  • believe that every life matters and speak lovingly of this child going forward
If in doubt about whether there is grief and sadness about this loss, ask. Ask them if this was a baby to them (for some it takes a while for them to view the pregnancy as a baby and a small percentage may never feel that way)? If they answer that it was a baby, then the appropriate support should be given. Here are a few ideas on what could be said to newly bereaved families, especially those experiencing a miscarriage.

"I am sad to hear about the loss of your baby. I am here for you to listen and to support you."

"While others may give you advice to get over this quickly and move on, I will not. This baby was a treasure to you. Therefore this loss is to be given great respect."

"I don't quite know how to help you, but you can count on me if you need anything."

"Please know we are sad about what has happened. Did you name your baby? If so, may we call him/her by that name?"

"You have every right to feel the way you now feel. You don't need to rationalize your reactions and grief to anyone. Your baby is worth crying for. Of course you will miss your little one! You are her/his parent and will be forever."

I think you can get the idea. Affirm, show love, speak of the child now and in the future, and do not join those who see this as a small event for the parent(s). Again, I suggest, if they define this as their baby, you can count on it being hard and it will take doing good grief work over time.

Please know that it is never too late to show concern, offer care, and a listening ear. Even if someone's miscarriage may be years and years ago. As you know, Katja, memories remain, work may need to be done, and healing can happen at any time and in any special place. Thankfully, some of your healing happened in one of our special places - near a flowing waterfall and pool on a desert hike in the Catalina Mountains. We are blessed to have met you and now honored to be a part of your babies' stories.

Me: Why are bereaved parents working so hard to raise awareness about infant death?

Sherokee: If a son or daughter dies, no matter their age or the size of their body there are many facts to consider. In most cases, that child was wanted. There were hopes and dreams along with specific plans for decorating the child's room, holidays, daycare, preschool, interactions with siblings and other relatives, updating one's home or moving, saving money for special toys, weddings, college, and so much more.

When that child dies, what is the appropriate response by the parents, the family, and their community? To recognize the love and the significance of the loss. To offer support and remember that child into the future, saying his or her name out loud. To realize that a beloved person who dies cannot be replaced by another and forgotten. To offer parents time off from work, support over the short and long run, and to promote natural grief work as a means of remembering and healing. This child is a treasure who will be held within the parents and siblings' hearts for the rest of their lives. hey did not disappear as if they were never there. Their presence is felt and honored. At least this is how it should be if people thought about how 'they' would react.

However, what happens when that child is small as in a miscarriage or early stillbirth, was not seen by others, is born still late in pregnancy or dies in the NICU before even going home? Some staff, many doctors, quite a few family members, supervisors at work, and even some churches make light of the situation - treating this loss as the loss of a trinket. This is painful for parents and confusing. How do you do healthy grieving and integration of this child into the family when the pressure is so great to forget, have another, move on?

An awareness movement is necessary to change people's beliefs and teach them to be more supportive and openly compassionate. They need to be informed about how difficult it is to live after a baby dies - literally! Many mothers talk of dying, some become destructive to themselves or their family, and yes, some do take their lives. Why not build a caring, compassionate, kind community of support rather than isolating these mothers and fathers from the help and love they deserve?

And almost more importantly, awareness is needed to create a nation-wide/world-wide outcry for research on these deaths and reduce the number of babies who die, which will reduce the heartache that tens of thousands of families face in the US each year and millions around the world. For example, people seem to be shocked when they learn that ten times more babies die from stillbirth alone than from SIDS each year--about 72 babies are born dead (stillborn) each day in the US. Yet, there is little research on causes and in fact it looks like a major birth initiative to reduce days in the NICU may inadvertently be increasing the number of babies who die around or after the due date.

I care deeply about such awareness, knowing it is vital for families of all socio-economic levels, cultures, and religions. Love and grief over the death of a child is universal, even if some customs differ.

I continue to dedicate much of my life (for almost 35 years) to support and advocate for parents, to teach and empower caregivers to reach high standards of compassionate and informed care, and to promote community conversation to reduce the number of deaths. We need a publicity awareness campaign; others and I have been looking for a few years for agency with a heart to offer pro bono services for such an important effort. There is still so much to do.

Me: I have read and heard that there is a movement in the USA to invite families to care for their own dead - including babies who are stillborn or die shortly after birth. Why is this happening?

Sherokee: To better understand this, we need to look back in time and look at other countries and cultures around the world and in the US. In most cultures, and in the early days of our country, families naturally (and personally) handled their beloved family members who died - literally. They bathed the body, cared for them, clothed or wrapped them, and lovingly buried or cremated them. In the case of children, babies in this example, having them in their home, in their cribs, in the presence of their other children is just a natural thing to do. In fact, I was just in New Zealand speaking at a Sands conference on baby loss where I met many, many parents who shared how sacred and special it was to have their babies in their homes after death - a standard custom there. Their eyes glowed with pride and love and they seemed content and at peace that they had this private time together.

For about the last half century in the USA, we unlearned that, so now it needs to be retaught to our bereaved families. They birth in hospitals and funeral homes are called to 'handle' their babies. Therefore, when (and if) it is offered to do self-transport or have the baby at home for a short while, they are sometimes aghast at the thought. If they only knew the healing that is taking place for many families who use this private time in the safety of their own home to introduce their children to their sibling in an intentional way. Some families take pictures of their family all together in the yard (sunshine and outdoors is appreciated by many parents) or in their own living room. Other parents spend hours dressing and undressing their baby, rocking her/him, telling stories and family memories, and even reading a few of the special books they had planned on sharing with a live child.

With all states but 9 allowing families to care for their own dead, this practice is now growing and should be offered as a legitimate option for each family in those 41 states. Staff and/or advocates should then be ready to help facilitate this process, which is something I consult and teach about. Knowing the law and paperwork requirements; having resources at one's fingertips, using a list/brochure of how to do this in a step-by-step manner are a few ways to assist families at this time. In fact, I have created a short brochure that can be used by hospitals.

Parents deserve to learn of all their (legal) options after their babies die. This is one that may be hard for staff to imagine, but is something they need grow more comfortable and knowledgeable about.

Me: What is the thing you believe parents need the most after their baby dies, including miscarriage?

Sherokee: Affirmation that they have the right to feel the way they feel. Recognition that this is the loss of a beloved family member, not just a sad or unfortunate event to be swept under the carpet. They need their family to honor their loss/their baby, to listen without trying to fix their pain, and to help them find resources - books, websites, FB pages, local support groups, spiritual support and more. If they can treat this as a big deal and realize it is lifelong for these parents, they will be able to be supportive over the short and long term. Reading about what parents go through and reading some of the literature about how family can help will be most informative, giving them confidence and tools to know better what to say and do. I have materials that can be helpful and there are many other resources to. In fact, in the back of my Empty Arms book there are 10 pages of helpful literature and resources.

Some of the resources I have created to help others can be found here.

Me: Please tell me about "Loss Advisors and Loss Doulas" - who they are, and what their role is.

Sherokee: Yes. This is the newest paradigm shift I am passionately promoting; it has the potential to give some control back to parents who are overwhelmed with shock and disbelief, in the early hours and to help minimize the fear they have, both of which color the decisions they make. With an advocate offering to help them navigate the waters, they can really make the time with their baby very special. In combination with well-prepared staff who have compassionate hearts, these highly trained Baby Loss Advisors™ or Loss Doulas® offer a vital service that is beginning to be sought after by communities all over.

As background: Given that parents who learn their baby has died or will die do not receive preparation for what will happen, what their choices/decisions are, an exploration of the pros, cons, and consequences (including life-long regrets), they often learn the hard way what they should have done after the experience is over. The regrets from making quick decisions in the middle of a crisis with limited ability to take in advice from medical professionals, can be immense and are frequently spoken of by grieving parents.

Therefore, one of the things most mothers and fathers seem to need right away after hearing bad news is a connection to someone who 'gets' what they are going through. Someone who has personal or professional experience in offering guidance, comfort, compassion, and even advice about what is to come, what their options are, and an understanding about how the time spent in the beginning impacts their future - including whether their grieving will be healthy or not.

These vulnerable parents should be given the chance to have this person call them (not the other way around, because it is almost impossible to call a stranger or a friend when in the middle of such a crisis). They should learn from their news giver at the clinic or hospital why having such an advocate can help and support them during this dark time.

We have created a certification program for Independent Baby Loss Family Advisors (also Baby Loss Doulas which is a certification for Birth Doulas) for these very reasons. These amazing women (all women so far, but we welcome men) offer a continuity of care that none of the professional care givers in a clinic or hospital can offer. They also act as a team member supporting the work of staff who help families birth and meet their beloved sons and daughters. Here are a few successful examples of how this service helped newly bereaved parents.

N. helped a family get pictures of their twins alive before the sister died in the NICU. She also ran out and bought more clay for handprints since they were totally out. In addition, she spent 2 hours in the cafeteria with the grandparents listening, answering questions, giving compassion, and sharing resources like written materials on Grieving Grandparents.

D. helped a miscarrying mom in specific ways including how to catch her baby in the toilet so she didn't have to deal with a decision to flush the baby down. She offered her ideas on taking beautiful pictures with a new technique called saline immersion, which thanks to Donna, we teach all of our Loss Advisor/Loss Doula students about.

S. helped a family (twice) deal with issues that became roadblocks when they were about to have a D & C after their baby had died early. Instead of giving up on their deep desire to take the remains of their baby home without it going to the lab to become lab specimens for under the microscope, S. helped them find a facility who honored their belief (personal and religious) that this was their child and they deserved to give permission (or not) to cut the little one up per the hospital's 'policies.'

S. helped TM (a mom who was reeling from the news that her son would be born a 'monster' according to the picture the doctor painted.) Rather than terminate the pregnancy TM carried her son almost to term, birthed him, named him, held him, parented him, and had a very special experience because of the birth plan that was written through guidance provided by her Baby Loss Advisor. The entire relationship was online (not even one phone conversation) and yet TM speaks of her Baby Loss Advisor as a friend and special advocate who helped change the long scary pregnancy into a very special one where she has little to no regrets.

We are so proud of all the work they do in reaching out to families as soon as they are contacted offering personalized guidance, support, and lots of love to help them navigate the turmoil following the horrific news of their baby's death. Yes, even in miscarriage.

Me: Is there any way a mother whose baby has died can help other mothers?

Sherokee: There are many, many ways. One might be through milk donation when that is possible. I encourage hospitals and our Baby Loss Advisors to offer this suggestion. Many parents want to donate their babies' organs, but rarely is this possible.

When ready, they are countless ideas such as:

Sending notes of comfort and resource sharing to parents who place a baby obituary in the paper,

Donating to the hospital for their baby loss fund -- it can help them buy books, other literature, memory boxes, mementos such as picture frames, cameras, and flash drives to give the pictures to each family when they leave the hospital. This money can help train staff, create bereavement rooms, and buy other program supplies.

Connect with people like myself to learn of specific ways to offer one's talents and energy through BabiesRemembered.org and BabyLossFamilyAdvisors.org.

Participate in studies to help learn more about bereavement support and cause/prevention research.

Seek out good organizations and FB groups like SOBBS, First Candle, Star Legacy Foundation, sand SHARE.

Learn more about or become certified to be a Baby Loss Family Advisor or Baby Loss Doula - there is a very specific way to share one's experience and learnings to help others when it most counts - in those early minutes, days, and weeks.

Please note that October is Pregnancy and Infant Loss Awareness Month throughout the world. The organization I founded started this movement in collaboration with other organizations such as SHARE and RTS and many smaller groups and lots of individuals from throughout the US back in 1986.

During this important month, individuals, groups and organizations hold events to help bring miscarriage, stillbirth, neonatal death, and SIDS/SUID to the community at large in hopes that compassion could be shown, learning about the issues for families could be shared, and prevention could become a priority instead of just accepting that 'some babies just die.'

For more information on events throughout the world there are some websites that attempt to keep track: october15th.org and october15.ca.

Image: Nathan Csonka