Article: “Lactation after Perinatal, Neonatal and Infant Loss”

Melissa Cole, IBCLC, RLC, Board Certified Lactation Consultant, recently published an article, “Lactation after Perinatal, Neonatal and Infant Loss” in Clinical Lactation 2012, Vol. 3-3.

After losing an infant, grieving mothers may still have to cope with postpartum issues, including lactation. This article reviews and addresses care options for lactation concerns after pregnancy, neonatal, or infant loss. Currently, lactation care and advice after loss varies greatly. Lactation consultants are instrumental in providing mothers with anticipatory guidance and evidence based care. Implementing system-wide training and education regarding this topic will help families receive the information they need to deal with the physiological aftermath of infant loss.

To view the article, please visit http://media.clinicallactation.org/3-3/CL3-3cole.pdf

Grief & the Holidays

Please take a moment to read our latest Sharing & Caring newsletter issue: Grief & the Holidays.

Click here to view.

Share Walk for Remembrance & Hope

The Share Walk for Remembrance & Hope was a beautiful event again this year! As over 3,000 bereaved families, friends and supporters gathered in Creve Coeur Park in St. Louis, the ceremony was perfect and the balloon release was magical.

Share Featured on St. Louis' Fox 2

Share was featured on St. Louis' Fox 2 on Friday, October 12th, to promote the annual Share Walk for Remembrance & Hope and October's Pregnancy & Infant Loss Awareness month.

http://fox2now.com/2012/10/12/share-pregnancy-and-infant-loss-support/

14 Years of Sharing

This article was written by Shannon Olson.

In the spring of 1998 we found ourselves newly married and expecting our first daughter with much anticipation.  My husband Ron and I fought together through the morning sickness that never went away, the mounting pressures of bringing a new little one home and beginning a life together that would ultimately test our strength as a couple, and be immersed in loss.

As my pregnancy progressed, so did complications.  I was sick.  I had never felt so sick before, but I was willing to do and go through anything if it meant our daughter Carol Lynn was born healthy.  In my 6th month, I was diagnosed with preeclampsia.  I fought through it and made it to my routine doctors visit on April 23, 1998.  It was the first morning I was able to get up and out of the house in two weeks, since I had been put on bed rest at home.  I was so very swollen.  None of my maternity clothes fit, and my shoes wouldn't budge on.  Ron had to work that day and just couldn't be there, so my mother went with me.  When I look back, I am so grateful that my mom was there with me.  She served as our rock, not just that day but in the coming days, months and years. 

My doctor took one look and knew that I was in trouble.  My face and body were so swollen that I was almost unrecognizable.  When they took my blood pressure, the doctor hurriedly told me that I had to have Carol Lynn that day, that if I didn't I was in grave danger.  She quickly left the room to gather the needed info to admit me.  The room was silent.  I looked at my mom with tears in my eyes.  “You have done enough, it will be fine Shannon.  It's time for this baby to come.”  My mom smiled at me.  With her words, I took a deep breath and I knew everything was going to be OK.  My doctor did one last ultrasound before sending me to the hospital.  Carol Lynn was going to be small at 32 weeks, but she looked great.  There was nothing that showed up on the ultrasounds then nor before that would signal to the doctor that she was in trouble or that she might have complications.

I was induced and surrounded by family when at 4:00am on April 24, 1998 a nurse came running and yelling into my room.  Ron bolted upright, drowsy from sleep.  My eyes hadn't even focused yet when the nurse pulled all of the wires out of the wall behind my bed and the loud sirens began to blare.  “You have to push Mrs. Olson, you have to push now!”  More nurses came running in and my doctor yelled for more help.  I did as I was told.  Ron looked terrified.  At 4:15am April 24, 1998, Carol Lynn Olson came into this world…. silent.  She wasn't breathing on her own, her heart was not beating.  They placed her in the bed next to mine, and a team of doctors and nurses worked on her for 15 minutes.  Once they had her heart beating, they rushed her out to place her on life support and to do a chest x-ray.  Mine and Ron’s families were out in the hallway when Carol Lynn was rushed out of our room in the arms of a doctor.  No one could tell them what was going on. 

I will never forget the look on the doctor's face.  He was young.  He didn't look like he was old enough to be a doctor, but he was so sweet.  He held my hand when he told Ron and I his name.  I don't know to this day what his name was, but I will always remember his face.  He told us that Carol Lynn was born with very little lung tissue.  She had all of her fingers, toes, and vital organs, but yet she would never, could never, breath on her own, and she had gone far too long without oxygen to her brain.  We had two choices.  We could either life flight her to Cardinal Glennon, however the doctor felt she would not make the flight, or we could remove her from life support and say goodbye. 

We choose to remove her from life support.  Ron and I didn't even look at each other yet we said it at the same time.  It was the right choice for us.  It was the hardest choice I have ever had to make.  The doctor gave her 20 minutes once she was removed, and told us that she would pass quickly.

I don't know who told our families.  I don't know how they were told.  But they all were there when Carol Lynn was brought back into our room for us to say goodbye.  We were given a stethoscope to listen to her heart beating.  Everyone held her and gave her the love that they could.  Twenty minutes passed, thirty minutes passed, two hours passed.  Carol Lynn's heart was still beating, and she tried to breath every few seconds.  Carol Lynn was given 20 minutes to live off of life support; she fought for two hours and thirty three minutes.  She passed away in my arms, surrounded by family and their lifetime of love.

“Oh God. I realize as a woman how lucky I am. I was there when that wonderful creature drifted into my life and I was there when she drifted out. It was the most precious moment of my life.” Steel Magnolias

I can't tell you when Cathi Lammert walked into our room, but oh how we needed her.  She made it ok to love Carol Lynn, to hold her more after she was gone.  She took a lock of hair, hand and footprints and pictures of our beautiful daughter that we have framed in our home.  Cathi was our lifeline.  Cathi saved us from the deepest, darkest time of our lives.  She saved my life.  Without her I would not be here.  I know to some that may seem like a dramatic statement.  However, when I left the hospital, when the funeral was over, when everyone else's life got back to “normal” and the silence set in, it was Cathi's voice that got me out of bed, got me though my grief, and took from my mind and heart the raw, painful need to give up. 

Ron and I attended Share meetings for about a year after losing Carol Lynn.  For me, it was a time to get out all of the things that angered me.  Meetings also gave us an opportunity to see and feel that we were not alone.  We were not social outcasts; there were others that were going through and had gone through this nightmare of losing a baby.  The couples that we met at those meetings are still some of our closest friends.  While we don't see each other nearly enough, we will always have the bond of being the “Class of 1998.”

We gradually stopped going to the parent meetings.  I think we knew that we were ready to move forward.  I know some of the parents we met continued to go for a few years after their losses.  I think just like our losses, our need for the monthly meetings was different.  We began down the road that brought us Alexander in 2000 and Lillian in 2003.  Both pregnancies were hard, and filled with bed rest, doctor's visits, medications, and ultrasounds each week. I almost lost both of them due to complications. 

After Lily was born, I felt the overwhelming need to get back to Share.  I started out volunteering in the office by helping the office staff file paperwork, stuff envelopes, do mailings etc., and then I began helping with the walk in October.  When I was asked to chair the national Share Walk for Remembrance and Hope, I felt that was my chance to help all of those other parents out there.  I could help give them another place to remember their babies.  I jumped at the chance!  With help from a close friend (who was part of the “Class of '98), we chaired the walk until 2008.  The sight of all of those balloons, the t-shirts with the footprints and all of the baby's names, the larger and larger crowd that would come each year, my time as Walk chair was so very bittersweet. 

In between kids, and walks, I also became a Share Companion.  I found that I had much more strength than I thought I had.  In the midst of training, I learned that my much-loved father in law had ended his life.  I didn't know if I could go on and be a Share Companion, but the grief that I had over losing Carol Lynn and my father in law compelled me to help others… in their memory.  Beginning the journey with parents from all walks of life, all ages, all religions, the common bond between them and I, are our losses.  Each time I walk into a hospital room, before I open the door, I speak to Carol Lynn.  I ask her for strength and understanding and to give mommy the ability, no matter what, to help the family that I am about to meet.  I know she listens.  I know she is there with me when I meet the babies and take their hand and foot prints, and take their pictures.  I know she is there when I kiss their little hands and tell them that Carol Lynn will meet them and make sure they are ok.

 In 2006, my mom passed away after a more than 20 year battle with cancer.  Again, Cathi was our twinkle light in a dark moment.  One of my mother's last wishes was that Cathi officiate her funeral.  She didn't hesitate; Cathi did an amazing job.  She remembered my mom for who she was, and she led the funeral with times of laughter, just as my mom would have wanted.  I realized as Cathi was bringing to a close the memorial of my mother, she was not only free from the cancer the she fought for so long, she was also now with her babies that she had lost so many years ago- two sets of twins, both stillborn, whom she was never able to see nor hold.  Her loss, was so very much mine.  She needed Cathi at the end of her life to bring her to her children…. Cathi is so very wonderful at that.  Share, Cathi, and the many who work and volunteer for Share help bring us to our babies.  They give us our safety net, our peace. 

After my mother passed away I began working at the national Share office as the executive administrative assistant.  I had the opportunity at that time to see Rose, Jeanna and the other office staff in their everyday quest to help families and caregivers.  It was amazing working alongside these great women.  While my time working as a staff member was brief, just 6 months, I will always cherish the memories and knowledge this gave me. 

This July, I was given the opportunity to come back as a Share companion, something I truly have missed.  Now, I not only do it in memory of Carol Lynn and my father in law, I do it for my mom. 

This past April, Carol Lynn would have turned 14.  I found myself unprepared for this milestone, and this birthday hit me hard.  There are times it seems like yesterday I held her.  I can still feel her skin, I can still smell her.  While the raw grief has been long gone for many years, at times I can still physically feel it when I hear a song, or look at her photograph or when Alex or Lily ask about her.  14 years later, I still miss Carol Lynn each and every day.  We do not visit her grave as often as we used to, but I don't think that she is there.  I feel her now as I write this; I feel her with us. 

I was asked the question “Why do you continue to stay involved with Share?” It is simple really.  Why do those who have traveled far and wide always feel at home when they arrive?  Share is my home, my place where love has been given and shared.  Share is my life boat.  Ms. Cathi and the Share staff have been there in my darkest hours; they have seen me, my family and my husband at our best and at our worst.  Share has given us hope, love, and understanding.  Share is home in my heart.  You always come home.

Capturing a Short Life Documentary

Watch the screening of the documentary "Capturing a Short Life" at the launch of the International Palliative Care Network Conference 2012 on October 1, 2012.

Sheona McDonald's documentary is a beautiful, intimate and life-affirming documentary about families with infant loss. It explores how critical it is to remember and celebrate the beautiful babies who are only with us for a moment, and how impossible it is to forget them. Available for screening for 72 hours on Palliative Care Network's YouTube channel.

Don't miss it. To view the trailer, follow this link: http://youtu.be/8nC7RQfiA3I

How Share Helped My Mom and Dad

This article was written from the perspective of Chloe Pollard

I died suddenly at full term. The reason for my death is a mystery. It wasn't because I did not love my parents or anyone's fault. It was something that just happened. My mom and dad found out I had died when they went to the hospital and were asked many times, “When was the last time you felt the baby move?” They gave my mom a shot and left.  They did not come back until hours later when she told dad to get them because she felt she needed to push. I was born sleeping May 27, 1989.

In 1989, Share had an active chapter at St Mary's Hospital in Clayton, MO. This was the same hospital I was delivered at. Mom almost fainted the first time she entered the hospital to get to the room where the meeting was held. She felt weak and devastated getting out of the car.
She choked on my name when Share members first asked her. She hadn't had a REAL conversation about me. My parents became known as Chloe's parents.  Share members gave them a safe place to be parents. Mom could say things like: “I think Chloe would like ___”or “Chloe would do ___”.  Share members understood, nodded their heads in acceptance. Mom & dad craved unconditional acknowledgment as my parents in those early years.  They felt soulfully comforted.
My 23rd birthday was May 27, 2012.  Their first Share meeting was June 1989. Dad was Share president during the early growing years of the organization. They've been with Share almost as long as Cathi Lammert. Share gave my parents safe harbor, a place to raise me in their hearts.
My mother asked 3 questions of herself and my dad
      1.) What do we do with Chloe love?
      2.) Will we see Chloe again?
      3.) If yes, how do we answer, “What have you been up to since I left?”
These questions were transformative for my parents. Each found peace and fulfillment in seeking answers. They felt sad but not stuck in continuous sorrow.  As time passed without me, they imagined milestone life events. The earliest years were the most painful: first tooth, first words, kindergarten, etc.  As I grew up in their hearts, joy and playfulness emerged. An example is my mother “giving” me a boyfriend. She etched a boy's name & mine on a graffiti wall while in a rest room on a road trip to Kansas City. I would have been 15 at the time.
Share helped my parents by offering them a world where they received witness to their love for me. Share gave my parents a place where they could express what was in their hearts. Share is where I grew up.

Annual Share Golf Tournament Was a Success

Share hosted the 15th Annual Golf Tournament yesterday at St. Louis' Forest Park Golf Course. The event was a wonderful success with over 20 golfers, perfect weather, a silent auction and great food! We hope you can join us next year!  Click here to view the welcoming from Fox 2's Mandy Murphey! http://www.youtube.com/watch?v=9wn8sJXAAKI&feature=youtu.be

 

Celebrating 35 Years of Share

The September/October issue of the newsletter includes history and highlights of the advancements Share has made over the past 35 years. We want to thank everyone who submitted stories of how Share helped through their grieving and healing as well as stories from caregivers of how Share helped in honoring precious babies and promoting patient advocacy.

http://www.nationalshare.org/SeptOct2012.pdf

Share's Walk for Remembrance & Hope



Join us for the 2012 Share Walk for Remembrance & Hope on Saturday, October 20, 2012 in St. Louis, MO! 
Click here for a message from Share's PR & Development Director, Megan Nichols, inviting you to join us!

Click here to register today!

Walks Across the Nation

If you're unable to join us at the National Share Walk for Remembrance & Hope on October 20, 2012 in St. Louis, MO, perhaps a walk is being held closer to your doorstep?

To view additional walks, visit our website: http://www.nationalshare.org/walks.html

Book Reviews

The Share staff continually expands our catalog with books we find resourceful and helpful to you along your journey of grief and hope.  Below are a few of the books we read and reviewed, and are now available to purchase in our online catalog.  Click here to view our available books and resources.

Getting Near to Baby
By Audrey Couloumbis

Getting Near To Baby is a poignant, tender novel, winner of the 2000 Newberry Honor Medal, and one of the first novels we have come upon that is written from the perspective of an older child. This is a fictional story of Willa Jo and her younger sister in the aftermath of their baby sister’s death, their mother’s heavy grief, and the healing and hope that springs forth from an unplanned climb onto the roof. A recommended read for ages 10 and up, and for adults looking for insight into their older children.

Naming the Child: Hope-Filled Reflections on Miscarriage, Stillbirth and Infant Death
By: Jenny Schroedel

Naming the Child: Hope-Filled Reflections on Miscarriage, Stillbirth and Infant Death, written by Jenny Schroedel, is a comforting resource that contains advice, suggestions and messages of hope from bereaved parents who have experienced various types of pregnancy loss or early infant death.  The author, who has comforted close friends and family following their losses, provides gentle suggestions for creating bonds and honoring babies goon too soon.

Poignant Blog Post from a Bereaved Mother

For those who have had an early pregnancy loss, did you experience similiar emotions and reactions by family, friends or medical staff as the author of this poignant blog entry?

http://skirt.com/powergirl/blog/what-i-didn’t-expect

Journey to Meeting Thomas

This article was written By Amanda Davis

When my boyfriend and I found out the precious baby I was carrying was not going to survive, we were stunned. Stunned. We had also been stunned when we discovered we were going to have a baby, but we quickly grew used to the idea and began making all of the exciting plans that all expectant parents make. We talked about names, picked out baby furniture, and I started buying maternity clothes. I had a sonogram at 12 weeks because I was experiencing some bleeding, but everything looked great. We could see our little baby swimming around waving to us; safe and sound and happy in my womb.

Two weeks later, at my regular OB appointment, my doctor couldn't find my baby's heartbeat, so he sent me down the hall to have another sonogram. I was relieved to see my tiny little baby and that beautiful blinking heartbeat. I thought I was out of the woods, until the technician said she would be right back – she needed to have my doctor come in and take a look. Even though her words were soothing, I knew in my heart that something must be wrong. Those few minutes that she was gone dragged on for an eternity, while I lay there on the table with my shirt off, goo on my belly and fear in my heart.

I was right. Something was wrong with my baby. My doctor held my hand as he gave me the news that there was no amniotic fluid around my baby. I didn't understand the implications. With tears in his eyes, he told me to get dressed and we would talk in his office. As I got dressed and waited outside his door, watching other happy pregnant moms being led to exam rooms, I didn't understand just how bad things were. I had no idea that no amniotic fluid was basically a death sentence for my baby.

I broke into tears as my doctor explained that the reason my baby had no amniotic fluid was because there were no kidneys, and that a baby couldn't survive with no kidneys. I asked  if my baby would be able to have a kidney transplant. He said, no, that because there were no kidneys, and no amniotic fluid, that my baby's lungs would not develop. He encouraged me to terminate my pregnancy, but I refused. As I left his office that day, my mind was spinning in a million different directions. All I kept thinking was that my boyfriend didn't even know that our unborn baby was going to die! I thought about how an hour before, I was a blissfully happy pregnant mom sitting in my doctor's waiting room reading a magazine with a bright-eyed, beautiful baby on the front cover – a baby wearing a light blue sweater that matched his eyes.

My boyfriend agreed with me that we were not going to terminate our pregnancy. I got on the internet and looked up everything I could about our baby's condition, and we joyfully and sadly awaited our son's birth. (Yes, we found out several weeks later that we were going to have a little baby boy.)  We decided to name him Thomas after his dad and grandfather. I anxiously awaited the day I would be able to hold my Thomas in my arms and gaze into beautiful eyes that I imagined would be golden brown like his father's. Unfortunately, that wasn't meant to be, and we found our son had died when I was 30 weeks pregnant. I was induced and 25 hours later, he quietly and without fanfare, slipped from my womb and into his permanent place in our hearts.  

It has been almost two years since I last saw, held and kissed my son. I have since given birth to a healthy daughter, and while I cherish every minute of every day with her, I will never forget my sweet Thomas. I will never regret my decision to cradle him in my body even though I knew he was going to die. Those weeks I carried Thomas following his diagnosis were the saddest and happiest days of my life. Yes, I knew Thomas was going to die, but I also knew that I was going to do whatever I had to do to make him know that he was so loved by his Mom. I ran through the sprinkler, I took him to the zoo and the park and my favorite restaurants. We went to the beach and I rubbed my belly and talked to him while I listened to the waves crash upon the shore. I gathered shells that I placed in a special jar. I ate Happy Meals at McDonalds. Everything I did, I did for Thomas. I comfort myself with knowing that all he knew in his whole short life was love; nothing but pure love.
I miss him terribly. When my daughter was born, I nuzzled her close and thought about all I had missed out on with her brother.  I think of him often, but I do not regret one second of the time I spent carrying him and loving him. He has changed me in ways I cannot describe.

Providing Compassionate Care to Families Making Difficult Choices

This article was written by Rose Carlson, Program Director at the National Share Office.

The term “difficult decisions” encompasses a variety of situations that parents may find themselves faced with and as caregivers, it is important to understand the many challenges and complexities families must face throughout the decision making process as well as the grief journey. With the advancement of prenatal testing measures, it is not uncommon for parents to find out fairly early in the pregnancy that their baby has a condition that is incompatible with life. Also, many parents today become pregnant due to extraordinary medical procedures and may be pregnant with a high number of multiples, which increases the likelihood that the parents will have to make some heart-wrenching decisions. It is vitally important to keep in mind that these decisions are typically not made lightly and are made after all options have been presented and evaluated.  Share does not take a political stand, but provides bereavement care no matter what decision a family ultimately makes.

Most often, you as caregivers will see the family after they have already made their decision and are in need of support as they make their way on their grief journey. They may have already interrupted the pregnancy or opted for early induction. They may have made the decision to interrupt, yet are still carrying the baby. Sometimes, their friends and family members may think they should feel 'lucky' that they found out early that something was wrong, and may even think that their grief shouldn't be as acute since they made the decision to interrupt the pregnancy. They may have made the decision to interrupt the pregnancy but still need to decide how that should be done. Often, they are not given much time to make these decisions, and depending on how far the pregnancy has progressed, they may have to travel far from home, deal with a hospital ethics committee, or even go to an abortion clinic, which is devastating and traumatic for someone who is carrying a very wanted baby.

The parents may have decided to continue the pregnancy and are now looking for support in how to 'get through' the rest of the pregnancy carrying a baby they know will not survive. The decision to continue a pregnancy can be just as grueling as the decision to interrupt one. If they have decided to continue the pregnancy, they may need your help in creating a birth plan, which can help them feel as if they have some control over a scary situation that is completely out of their control. Listen to their wishes and try to do whatever you can to make them a reality; don't just assume that something cannot be done. If the family has other children, help them find resources on children's grief issues. They may be afraid of what their baby will look like, so try to find out as much as you can about any medical condition their baby has so you can help prepare them. It can be very draining for parents to keep all of their loved ones informed about what is going on as their pregnancy continues, so suggest web-based ways for them to keep everyone updated. Caring Bridge, www.caringbridge.org, and Care Pages, www.caringpages.com, are excellent ways for them to share news about their baby without having to make numerous phone calls.

While most of the time parents will come to you once their decision has been made, it is possible that parents who are still in the midst of their decision-making process will come to you. It is important not to guide them in this process while letting them know their options, letting them know about any resources you have, and offering your support once the decision has been made. There are organizations that offer support for many different conditions, and Share provides a list of these resources. It can be helpful for you to familiarize yourself with the many resources that are available so that when a family comes to you for help, you have places to refer them to if necessary.  Oftentimes, parents want to connect with other parents who have experienced something similar, so if you know of other parents who have gone through this, ask them if they would be willing to talk to new parents.

Whatever situation you find yourself faced with, it is important to provide a non-judgmental ear and keep in mind that whatever decision the parents made, they did so with nothing but love and the best interest of their baby at heart. It is also important to keep in mind that parents in this heartbreaking situation often feel very isolated since most people cannot to relate to their loss, and you may be the only supportive, caring person they have at this difficult time. Parents faced with a fatal or potentially fatal diagnosis are scared, confused and overwhelmed. No matter what they decide to do, they will sometimes wonder if they made the right decision. However, most parents who are told all of their options and supported through whatever decisions they make will feel as if they made the right decision with the information they were given at the time. Whether or not they continued the pregnancy, they may need your help planning a farewell ritual or preserving memories. Always remember that the baby was wanted and loved, and know that the care you provide to them at this most difficult time of their life will mean so much to them in the years to come.

Our Story of a Difficult Decision

This article was written by Ariel Darby


In 2001, at the age of 3, my son Ashton was diagnosed with Adrenoleukodystrophy. The disease is the body's inability to break down fat, leaving the fat to build up on the brain causing immobility, incontinence, memory loss and death in boys under the age of 10 if the disease presents itself in childhood. The disease can take two forms; the first in childhood with death resulting, the second in adulthood. You never know which form a child will have and both forms are found in my family history. The disease is X-linked, passed on by women who are carriers, and only effects males. Females may have symptoms later in life, but will not actually get the disease. Adrenoleukodystrophy is also linked to Addison's disease, which causes a weakening of the immune system and requires the use of daily steroids to fight against flus and colds, etc. Winter months often lead to hospital visits or admission to the Intensive Care Unit.


Upon learning of my son's condition, I asked his physician for answers.  Frustratingly, he could not tell me any more than I found myself on the internet and he said I could never have healthy children.  From there I took matters into my own hands. I enrolled Ashton in a case study with the top Adrenoleukodystrophy doctors in the country. I knew that if the study did not help Ashton during his first 10 years, the information gathered could help other children in the future.


In July 2009, my husband and I realized how much we longed for a son together after experiencing a pregnancy loss. At that time, we had two girls together and Ashton from my prior relationship. We knew our odds were 1 in 25 for a healthy son or daughter. We also knew we could test the baby via CVS at 11 weeks and that once a baby was born, testing would be denied unless it was a boy.


We tried for our little boy to complete our family. As soon as the pregnancy test was positive many emotions came to light – the excitement and the fear of having to do the unspeakable if our news was not what we wanted to hear. I tried to stay positive while preparing for the worst case scenario.


I had a feeling that the baby was a boy and was not with us to stay. During the CVS procedure I saw his little arms, legs, hands and feet. I could see his movements and, most impressively, I could hear his little heartbeat. At that moment his life was strong within me. I looked at him knowing that I wanted him while also knowing that it might not be possible.


The days and weeks following the CVS were agony. Could we keep our baby?  Would we have the chance to bond with him? Not knowing what our future held was worrisome.


The phone rang to say we were expecting a boy.  My heart sank. I prayed as much as I could for my little boy. We held on for the second part of the news. The next day we learned that the son we had so longed for had Adrenoleukodystrophy.


All I could do was think of how hard life is for Ashton. I wanted to deny the diagnosis. I was so angry that this was our reality.


I asked my husband to make the decision whether or not to terminate the pregnancy. I could not bear the first step that needed to be taken. I had always opposed terminations and thought people who made that choice were careless with no regard to human life. Once faced with the decision myself, I realized that terminations also applied to another group of women: those who want their children, but for reasons only known to God, could not keep their children as they would not have a full quality of life.


I prayed my appointment would come soon and that my little boy would feel no pain. It was the hardest decision I have ever had to make. The guilt was overwhelming. It was my fault that the life I had just witnessed on the ultrasound monitor would come to an end. I begged for forgiveness and questioned why good people can have such hardship. Wasn't it enough that I had to live in fear for 10 years worrying about burying my living son? Now I have to say goodbye to this little one too?


I worked up until the day before the surgery to keep my mind occupied only to crash with tears the morning of. I cried the entire 45 minute drive to the hospital. Once at the hospital, I was asked to place two pills into my mouth – one in each cheek. I prayed that these pills would stop my baby's heart so that he could pass peacefully.


I was numb and an emotional wreck, but there was no way out knowing the life he would have. I entered the surgery prep room still crying.  As I laid there waiting for my turn in the OR, having contractions and bleeding, the surgery staff treated me as though it was nothing at all.  I was labeled as a careless mother like much of society depicts women in my situation to be.


I was then wheeled into the operating room. My emotions stung me again.  I was a mother in pain who did not want to lose her baby. I reached out for any alternative as the IV was put into my arm. I asked the doctor a myriad of questions: Was there a more reliable way of having a healthy son via IVF? I cried out loud so all could hear my desperation for a son. I wanted everyone in the room to know this was a baby that I wanted, not one being taken willingly.


As I woke up, I began to cry. I knew he was gone. My belly was empty  just shy of being 4 months pregnant. The nurse came in to have me to get up and pee so I could be released.


The disgust on her face was enough to make me feel ashamed of what I had done. Did she not know that I wanted him with me and loved him? Why were other mothers able to leave with their babies and I couldn't?


I was discharged as if nothing had happened to me, as if I did not just lose my baby. No one bothered to ask me how I felt emotionally or told me there was help out there when I was ready to let my secret out. I cried the whole way home.


One by one my kids would cry with me as they saw their mother's sadness. At that time they were 9, 5, and 2 years old. How could I tell them they just lost a brother? My son already fearing for his own life, I could not tell him his little brother could not stay because he had the same illnesses.


My surgery was on a Friday and I returned to work the following Monday to act as if nothing had happened for the shame and guilt of my decision. I should have taken time to grieve for him at home. Instead, I cried in my car to and from work, at work hiding behind my chair, in the shower, and in the silence as I went to bed at night and woke in the morning.


It is true what they say about losses and not wanting to be in public. I was so sad about no longer being pregnant but looking like I was. I was jealous of other pregnant women and wanted them to know I had just lost my son. I wanted them to not be as naïve as I was and to know that not all pregnancies end with a baby. I wanted them to know how precious life is and to love their children, not to take any minute with them for granted. They needed to be thankful for their gift of life.


Good news came weeks later that Ashton at the age of 10 was going to live. His disease had stayed dormant. At some point, his disease will take hold. For now, he can be a boy, however, he still fears for his life. The news allowed me to take a deep breath and have some comfort of not having to bury this son too.


Months later I contacted the doctor that performed my termination questioning what had happened to my son's remains.  There was no record of what was done with them. Had I known my options then, I would have chosen to keep them and place them in a pendant. This was the hardest part of losing him. Because he was under 20 weeks, his life was not acknowledged.


Correcting this has become my mission. I contacted my doctor and begged for him to let others following me know their options. Their babies matter no matter how small they are. Most importantly, no mother should suffer in silence with the guilt and shame associated with not being able to keep the baby they wanted. I realized it was up to me to let others know that terminations are losses too. Yes I made the decision not to keep my baby, but I wanted him and mourned for him just the same as any other mother who has had any other loss.


A year later while preparing for an IVF cycle, we tried one last time for a son. I knew from the moment the pregnancy test was positive that this one was mine to keep. Again I had to keep my excitement to a minimum knowing the difficulty I had just gone through. A couple of weeks later, I was sitting at a Share event when a woman approached me. I was sitting at the table explaining what Share is and what we do. She looked at me and told me that I was pregnant and that the baby, saying the word “he” was a healthy boy and everything would be okay this time. I felt chills and called my mother, the only person who knew other than my husband. She told me that the woman must have been an angel sent to me to help me relax and stay positive. I hoped that she was right, and still kept my feelings at a distance. I had a hard time hearing the heartbeat as I had before. Through the CVS testing I wanted to look at him but had flashbacks of his lost brother the year before. At 12 weeks, my maternal instincts and the woman were correct; we had conceived a healthy baby boy. I cried for the baby we could keep and the one we couldn't.


Until six months into the pregnancy, I would not give myself permission to acknowledge him. I knew he deserved my love but I needed to forgive myself for the difficult decision not to keep his brother. My turning point was writing a letter from our lost baby, later named Brett Nathaniel, to our new baby asking him to take care of his mother for she was very sad but loved him very much. The letter completed the bridge and relationship between these two little boys and allowed me to know it was okay to have Lucas in our lives – that there were no hard feelings. This was the moment that I used to separate the two brothers.


Lucas Nathaniel was born in March of 2011. His middle name is in honor of his brother Brett forever bonding them as brothers.


My journey continues as I see Lucas's face and think of his brother. I know they will forever have a bond as subsequent pregnancies do. My doctor continues to let others, who find themselves in a situation like mine, know that there is someone who understands. He has become an advocate as my journey showed him little lives are precious too. I continue as a board member of Share Southern Vermont to spread the word about loss and hope through sadness and happiness as the rainbow babies come to life. I know I am honoring my son, Brett, in the work that I do and the lives I touch. Had I not been promoting Share that day, my angel would not have appeared to guide me to Lucas.

July/August Newsletter: Dificult Decisions

The July/August Newsletter, Difficult Decisions, is now available.

Click here to read.

Registration now open for the 2012 Share Walk for Remembrance & Hope!

Registration for the 2012 Share Walk for Remembrance & Hope! Click here for details!

Share in GLAMOUR magazine

Share was recently mentioned in July's GLAMOUR magazine article detailing Bethenny Frankel's experience with miscarriage. Click hereto read the full article.

PLIDA Conference 2013 - Save the Date

Research Study

Fit Minded Mothers Interest Study

The purpose of this study is to determine if a book club aimed at physical activity participation is appealing to women who have had a perinatal loss. This study is a questionnaire assessing interest in this type of book club and does not involve an actual book club.

Who should complete this survey? Any women who has suffered a stillborn loss within the past year. The survey consists of 10 questions. 

To begin, click on this link: https://www.surveymonkey.com/s/5WXTV6D

Remembrance Jewelry

Parents who experience the death of a baby often yearn for ways to weave the baby into the fabric of their lives and are often comforted by collecting items to commemorate their baby. Especially at this time of year when everyone is celebrating moms and dads, finding a special treasure such a garden ornament or piece of customized jewelry can help you feel close to your baby and is a wonderful way to honor yourselves as the parents you are. Share keeps an extensive resource list of online places to purchase special memorial items, and you can view this list on our website (http://www.nationalshare.org/online-memorial-resources.html), and following are a few of our favorites that offer unique jewelry for both moms and dads.

I am a MOTHER and that's a Fact

This beautiful poem was written by Marilyn Hartman about being a Mother.

I am a mother, although some might argue this fact.
I may not know my child’s gender, but I am a mother none the less.
I may not be able to hold my child in my arms, but you can bet

I will always hold my child close to my heart.

I am a mother, although some might argue this fact.
I may not have issued a name, but I am a mother none the less.
I will never see my child’s little face, but you can bet
I will always treasure this child in my heart.

I am a mother, although some might argue this fact.
I will never see my child grow, but I am a mother none the less.
I will never hear my child’s first words, but you can bet
I will always hear the silence in my heart.

I am a mother, although some might argue this fact.
I will never see my child take a step, but I am a mother none the less.
I will never hear my child cry, but you can bet
I will always hear the cries in my heart.

I am a mother although some might argue this fact.
I will never change a soiled diaper, but I am a mother none the less.
I will never have 3 a.m. feedings, but you can bet
I will always long for them in my heart.

I am a mother, although some might argue this fact.
I may not have carried to full term, but I am a mother none the less.
On Earth, I won’t be blessed with my child, but you can bet
In Heaven I have an angel who I love with all my heart.

Father's Perspective vs. Mother's Perspective

The following provide perspectives for both Father's & Mother's, as both approach the sentimental holidays. 

A Father’s Perspective…
Submitted by John Stuart, Daddy to Kieran

My story is probably no different than anyone reading this newsletter. Our only child, Kieran, was born premature and only saw one sunrise. There were many hopes and dreams that went with his passing. He was our only successful conception in over 4 years of trying. So when we were originally informed of our good fortune, much of our life during those 22 weeks was focused on his arrival and preparing for our new future.

How people experience their grief and how they cope is as different as snowflakes. The losses we experience are very personal and often difficult to quantify. I was devastated by the prospect of not seeing him every day and not being able to watch him interact with the world. For the first several months, I coped by immersing myself in other distractions and withdrew from all of life's optional dealings. I lost the ability to focus on all but the simplest, singular tasks. And it hurt to experience most any emotion, good and bad.

Father's Day was just 17 weeks after Kieran's birth. As it approached, I was keenly aware of its meaning and that I was now among the honored. This was not how I envisioned joining the ranks and I felt uncomfortable. This was compounded by wanting to acknowledge my own father. My child could not do the same for me.

It's difficult to express how I came to grips with my emotions. I felt sorry for myself and I knew that was destructive. I needed to alter my perspective. I realized that the honor of being a father was not an external acknowledgment but in my own, internal perception. I am happy to have a son. Although he was not physically with me on Father's Day, he was with me in spirit, as he continues to be. The world doesn't have to acknowledge that I love my son, because he knows and I know.

My wife also knows, and loves our son and me. We managed to make it through Mother's and Father's Days because we respect that the world is full of complex emotional triggers and these holidays are very big triggers.  Our reactions to the triggers are usually different, but we're able to look beyond the reaction and see the underlying response as emotions of love and loss. Outward expression of these emotions can be manifested in negative ways.  But we remember that what the other person is reacting to is valid even if the reaction seems irrational. We need to vent our emotions even if the emotional release is misdirected.

There are many holidays on the calendar that are intended to cause you to pause and consider how a particular group of people has affected your life. For me, Father's Day has taken on multiple facets. I think about my son, for without him, I would not be a father. I think about my wife, for without her, I could not have a son. And about my parents, for without them I would not know what it means to be a parent. I love and am grateful for all of them.

 _________________________________________________________________________

 A Mother’s Perspective...

Submitted by Suzanne Phillips, Mommy to Kieran

Mother's Day has been a hard, complicated day for me for many years.  It's the annual reminder that, “I don't belong in the mommy club.”  My husband and I struggled a long time to become parents, only to lose our precious boy.  Although I am Kieran's mommy, because he lived so briefly, my “mommy credits” fall short.  I feel left out of the club when I see other mothers and babies – in the park, coffee shop or congregation.  I know first-hand about sleepless nights, but I don't have stories of Kieran's firsts:  the first time he held his head up on his own, rolled over, pulled himself up, crawled, teethed, babbled or stepped.  It's hard for other mommies to listen to my baby's short story. He's not wiggling around, demanding attention.

For a long time, I avoided Mother's Day. I avoided the saccharin cards, speakers and mother-daughter banquets which celebrated motherhood. Then my husband and I began to do something special that weekend without it being “mother” or “father” focused.  We have gone camping, picnicked at an outdoor jazz festival, and attended local arts festivals.  For me, camping has been the most successful because most families don't camp in May.  It's easy to enjoy nature with our dogs as we set up camp, hike and are buzzed by local hummingbirds.

Last Mother's Day (2007), the first without Kieran, friends invited us to go sailing.  The focus was on friendship and catching up. They talked about Kieran.  At the end of the day, they gave me a Mother's Day card – the only one I received.  I cherish it as recognition of our friendship and Kieran.

There are no Share support groups in our area.  However, the local Children's Hospital sponsors an annual Memorial Service for bereaved parents between Mother's and Father's Days.  This service is a safe place to openly remember and mourn our babies.  We are not isolated.  This recognition of our loss validates the pain and grief we feel, particularly when it seems the world celebrates parenthood as only having living children.

Whether or not you chose to participate in Mother's or Father's Day, I recommend you take steps to care for yourself on that day.  It's OK to simply avoid the whole event.  It's OK to ask others for what you need.  If it feels right, find a moment to remember your baby and honor yourself as your baby's parent.  For these two days, my husband and I each created our own bracelet with Kieran's name, his birthstone and his animal.  This creative action honored our child and our new title as parents, despite other's conflicting opinions of our parental status.  In honoring ourselves as parents, we also honor our babies. 

Mother's Day: Bittersweet for Some Women

When I think of Mother’s Day, a wealth of images comes to mind. I see women in restaurants wearing corsages and red roses and baby’s breath pinned to their dresses, close to their hearts: Visual symbols of motherhood. I see my mother in the 1960’s, wearing a flower-covered puffy hat and a cream-colored coat fastened with buttons the size of half dollars, three children trailing behind her on Mother’s Day morning. As usual, we are late for church. 

But I also see women who are not wearing corsages, who are not necessarily walking with children. These women carry in their hearts a quiet, lonesome sadness. Some are women I know by name; most are strangers to me. They are everywhere:  In office buildings, in grocery stores, in libraries, in movie theaters, in airplanes, traveling to new destinations. They are women who have had miscarriages. I am one of them:  Part of the sisterhood of unspoken sorrow.

Miscarriage is common, but not talked about much. Though part of life, it is often a taboo topic. Even women who have miscarried aren’t sure if they should mention their loss to anyone. Pregnancy, childbirth and menopause get more public attention. Women are often not prepared for the complex feelings of loss and grief they must cope with when a baby dies within the first 20 weeks of pregnancy. According to Fran Rybarik, former director of Bereavement Services in LaCrosse, WI, when a pregnancy ends in miscarriage, “The whole person is affected—physically, emotionally, socially and spiritually.” A parent invests in a child’s life long before it is born.

One day a woman is pregnant, the next day she isn’t. She has nothing to carry in her arms. Unless she has had multiple miscarriages, usually she never finds out the reason for the unsuccessful pregnancy. Even then, medical staff may not be able to give her answers. Sometimes, only a few family members and friends know of the pregnancy;  sometimes, no one knows except the father. Through tangled emotions, it is hard for a woman to say, “I was pregnant a few days ago, but now I’m not. This is terribly sad for me.” Society doesn’t often acknowledge miscarriage as a death that can-and should-be mourned.

People easily sympathize with the death of someone visible, someone whose passage has been marked in legal records, someone with a name. People say, “I’m sorry.” They expect mothers and fathers to grieve. They encourage them to talk. They are compassionate listeners. They offer tangible solace:  A gift of food, a lilac bush to plant in the backyard, an appropriate book.

On Mother’s Day, it is appropriate to acknowledge a woman’s loss—particularly if the miscarriage was recent. But even for women who, with the passage of time, have come to terms with their loss, Mother’s Day can bring back a sadness. A simple note written on a blank card and sent in the mail is an act of kindness on this day.

For women who have miscarried, thinking about the lost child is inevitable. They are confronted with rows of greeting cards in gift shops, restaurant advertisements urging early reservations for Mother’s Day brunch, phone companies reminding people to call mothers who are far away and bouquets of long-lasting carnations delivered to neighbor’s houses. The day of celebration is obvious. As women think about their own mother, they again are reminded of the child or children they do not have. It is bittersweet.

Mother’s Day, though, can be a day of healing.

Women who have a miscarried child should give themselves permission to grieve. They can read about miscarriage, putting themselves in the company of others who have experienced this common, but often publicly unspoken loss. They can talk to family and friends. Given the chance, people will reveal the circumstances of their losses with vividness and compassion. A woman can write about her miscarriage. Through writing, no matter how informal it is, she can put some sort of control on the uncontrollable. Because it is spring, she can plant a rosebush, a maple tree, or a deep red peony in the yard:  a visual symbol of “almost” motherhood.  On Mother’s Day, I think about women whose lives have been affected by miscarriage. Perhaps their hearts—like mine—have been mended over time. Perhaps the pain is fresh and their heartache needs to be acknowledged by family and friends.