Grieve Out Loud

In honor of pregnancy and infant loss awareness month, in conjunction with our three-year anniversary, we are launching the Grieve Out Loud Grief Relief. Read about Grief Relief here.

Today’s submission is about divorce and/or separation after loss. Here are some things you could include in your piece.

How long were you married/together before your loss?
When did you first feel the separation?
Were you able to talk about your loss with your partner?
How did the divorce talk come about?
Where did you go after the split?
What advice do you have for families being faced with divorce?
Do you feel more alone without your partner?

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E-Mail Submission Guidelines are as follow:

1) All submissions are to be sent to with the subject “Divorce.”

2) Copy and paste your original piece into the body of the e-mail. No attachments please.

3) Please include a one paragraph bio including your name, your baby’s name, type of loss try, and blog URL if applicable.

4) All submissions are subject to editorial review and may be edited for clarity. We may only utilize a small portion of your work.

5) Submissions due by 11/01/12

Today is the last day of my 30 days of muchness challenge. Want to take a moment to look back and share some of my experiences with you.

Day 1 was probably the hardest day of my entire challenge. There was a family baby shower happening over Labor Day weekend and I knew I wanted to create something unique for baby H.

It was my first creative project (and baby shower) since my own son died and just the idea of creating something for another baby (boy) had me in limbo. Found some woodblocks at the resale shop a few days prior and with a little burst of creativity I decided to create some nursery artwork. With the help of some black acrylic paint, a sharpie, a ruler and spray adhesive I began digging into my fabric stash and pulling out some of my favorite swatches.

By day 3 my present was complete with an added bonus of swatches used in my son’s nursery. Now a little piece of my son will be shared with their new family.

Day 13 was a prep day for my husband’s birthday. Decided early on that I would create monster cupcakes for him. Went to the candy store and bought loads of penny candies for decorating.

Day 14 was his birthday and so began hand-creating 30 uniquely different cupcakes. Along the way I found myself creating cupcakes for our son, since his birthday would be coming up next. Decided right then and there that this year I would ask my friends and family to honor our son by making or buying a cupcake and sending us a picture.

Day 17 I gather my son’s urn and carried him downstairs to take his annual picture next to his memorial jade plant. It’s amazing to see how much his plant has grown!

Day 18 was his 2 year birthday. We spent the day at Kings Island and made sure to walk through Planet Snoopy in his honor. When we returned home my best friend surprised me with a visit. She wrote his name out in cupcakes and goodies and it really made my day.

Later that evening a friend sent me a picture of her jade plant and a cupcake for our boy. It was another heart-warmer because I actually took a cutting from my jade plant to send to her in memory of her son R.

Day 28 I woke up to balloons and candy! I thought for sure my husband got his days mixed up. Comes to find out he wanted to kick off my 30th birthday with 3 days of celebration!

Day 29 I woke up to a beautiful fall mum with a note “A mum for Mom” (which totally melted my heart!)

Day 30 it was all about my chocolate cake!!!!!

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I hope you have enjoyed the look back on my 30 days of muchness. Thanks to all who followed my journey and kept me on the muchness track. Special thanks to Tova for thinking this up and sharing it with us! If you are interested in taking the muchness challenge yourself, click here for all the info.

The Story Behind ‘The Nest’ by

“After marrying my high school sweetheart and waiting for our college graduation and his graduation from medical school, we were more than ready to start a family two years after that. After trying to get pregnant for more than a year, we were thrilled when I found out I would be having a baby the following summer. Whirlwinds of buying maternity clothes and outfitting the baby’s room occupied the first few months. Oh, how happy and excited we were! But deep down, I knew something wasn’t quite right. I had been cramping since the third month with some spotting. My doctor told me that most likely everything was fine. But it wasn’t.

On May 19, when I was more than six months along, I experienced the worst pain imaginable both physically and emotionally. I lost my baby. They called it a miscarriage and I wasn’t allowed to see the baby that was delivered – too small to live. To make things worse, I was told my baby was “flushed away” and that I was silly for wanting some sort of funeral service or memorial.

I was devastated. I felt empty. I didn’t think the sun would ever shine again. I didn’t want to go on. Nobody understood. I was alone.

I did not grieve properly. I was told to “move on” with my life as if my baby’s life didn’t happen. No one seemed to understand. It seemed best to try not to talk about it. To try not to think. To try not to feel.

And so, I buried the pain for many, many years. Some say I was not the same after the loss of my baby. Some say it caused the breakup of my first marriage of twenty-five years – to the father of my baby.

A couple of years ago, I was watching a bird build her nest in our backyard. Every morning I went out to check on the progress of the nest. The mama bird was building her nest at eye level so I could see each step of the way. Finally the nest was built and the mama bird laid just one egg. I waited with eager anticipation to see the baby bird come into this world. One morning I went out and I found the nest empty – no egg. Nothing. I saw the mama bird on a phone wire nearby. I was overcome with sadness – more than what would be normal for a situation like this I cried for hours. My husband encouraged me to write my feelings down. The words raced from my mind onto paper. And then it finally became clear to me. The empty nest was symbolic of the loss of my baby years earlier.

Through the words I wrote down, I was finally able to grieve my loss. And it was finally “okay” to grieve – to let it all out, to cry, to scream, to get angry and sad. My husband has been in the music business for many years. He took my words and composed a melody to go with them. My words became the lyrics to the song he wrote. It’s called “The Nest.”

Although the song is sad, it helped me work through my grief. I am a happier, healthier person today because I finally grieved the loss of my baby that I lost almost exactly thirty years ago.

I invite you to listen to my song. To those of you who share a loss similar to mine, please know that it’s ok to be sad, to grieve. But, please, PLEASE do not be alone. There are others who understand and can help you through this terribly difficult time in your life. I wish Grieve Out Loud was available when I first lost my baby. How wonderful this organization is!

Thank you for listening. If you have any comments, please feel to leave them on the YouTube web site or you can directly through e-mail.”

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Thank you Cindy for sharing your story and beautiful song/video with us! Hope this inspires our readers to put their words of grief into such beautiful and creative works of art.

Erica McNeal is one amazing gal! Not only is she a babyloss mama five times over, she is also a multiple cancer survivor. She found the strength to publish a reference guide entitled Good Grief! and we are honored to share her journey here. She hand-crafted a special note just for you.

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I knew I had a high-risk pregnancy.

I was prepared my cancer may return while pregnant and was ready to face those potential complications. However, I was not prepared for an unknown factor that would force my body to go into labor at eighteen, twenty and ultimately twenty-two and a half weeks gestation.

I had been placed on bed rest for three months when a sub-chorionic hemorrhage threatened my pregnancy. At my eighteen-week visit, during an ultrasound, the technician could see that my cervix was already dilating. I was given medication, but went into labor two days later.

I was already 3.5 cm dilated when the hospital doctor’s saw me. I pleaded with them to do everything in their power to keep me pregnant. With a triple threat of drugs and my body nearly shaking out of the bed, my labor stopped. My contractions went away and my cervix closed. I was completely shocked – I didn’t even know that was possible!

About one and a half weeks later, I went into labor again and repeated the same procedures, breathing a sigh of relief when the labor easily stopped.

But on June 11th, 2007, my labor picked up again. A friend took me to the hospital and I told my husband not to worry about leaving work. I had every expectation the doctor’s would be able to stop my labor again.

But, I was wrong.

By the time I had gotten to labor and delivery, my cervix was gone. I was already 4 cm dilated and there was nothing my doctor’s could do. The only thing keeping my little girl from coming into the world was a pessary that my doctor’s had put into place just weeks before.

With my husband rushing to the hospital, I had to make a decision no parent should ever have to make: my life or hers?

My doctor’s feared I may have a rare condition called “placenta accreta” where the placenta burrows deeply into scar tissue. Since I had a previous c-section, and everything else had been ruled out, the fear was that my uterus could rupture after delivery when the placenta naturally pulled away from the uterine walls.

The only problem was the hospital we were at did not have the medical facilities to care for a baby as small as our daughter was. I would have to be transferred to another hospital forty-five minutes away by ambulance. There was a very real possibility I would deliver her in the ambulance and if my uterus ruptured, there would be nothing the ambulance staff could do for me. I would die!

I understood the great potential for severe medical conditions for our baby girl. I understood she would have less than a 1% chance to live and I understood she could only live for a few hours. But, against my doctor’s advice, I told him I wanted to be transferred to the other hospital. I felt like if God wanted to give this child life, who was I to take it away?

I signed the transfer paperwork and everyone walked out of the room. While my friend was in the hallway, frantically trying to reach my husband, I prayed silently.

“God, if the end result is going to be the same, whether I have her here or there, please let me have her here!”

I don’t even think I said, “Amen”, when an immediate peace came upon me. I knew I would not make it to the other hospital. As I called for the nurse, my contractions went immediately to thirty seconds and my husband came flying through the door.

Not even five minutes later, Kylie Joy was born. She was beautifully perfect, my tiny little 15 oz, 11-inch baby girl. She had little tufts of brown hair, a cute little button nose and long legs. She was absolutely gorgeous.

As we held Kylie as she died, my husband and I began to grieve all of the hopes and dreams we had for our family. The daughter we would not be able to hug and kiss whenever we wanted; the little sister to our living daughter, who was so excited about her new best friend. The little girl whose hair we would never braid, or watch play sports, or walk down the aisle on her wedding day.

Kylie lived for eighty minutes, but her short life and ultimate death rocked our worlds.

The first year grieving Kylie was the most difficult year of my life. I was a hot mess, working through the extreme guilt believing that I had killed my own daughter. Sometimes there were no words to express my emotions and I would simply cry. At times I wanted to be by myself, other times I needed so desperately for someone to sit with me in silence. I even needed to laugh occasionally! What I needed changed constantly on my unpredictable journey of grief!

Even now four years later, I struggle! I miss her. I miss what our family could have looked like. I still grieve the broken dreams, just mostly in silence now. I still get teary-eyed on her birthday, when I hear another child with the same name, and at times when my living daughter talks about how much she wants a sister.

For the first couple of years, we had no idea how our family and friends could come alongside our family. We were in the middle of a grief we had never experienced before and a pain we could not comprehend. We had no idea what we needed or what others could do to help.

At the same time, our family and friends wanted so desperately to help, but had no idea what they could do. They too experienced their own first time emotions as they grieved with our family. The problem was this caused a disparity; conflict and a lot of unmet expectations, on both sides.

While people meant well, sometimes their words came out wrong – very wrong! At times when the absolute most grace was needed, people rendered us completely speechless by their insensitive comments.

As I have supported many women through child-loss over the last four years, I have been shocked to find how common these hurtful words really are. This led to a desire to help fill the gap between people that are suffering that don’t know what they need and their loved ones that don’t know what to do.

My new eBook, Good Grief! provides tangible ideas of how to love someone going through unspeakable grief, through words and actions.

Words That Can Be Misunderstood: “At least she didn’t live long enough for you to get attached!”

Words That Encourage: “I don’t know what to say, but I love you!”

Actions That Are Intentional: Understand that the pain of grief can sometimes get in the way of grieving. Provide outlets for your loved one such as golfing or poker night for men and dinner or a spa day for women.

Until October 11th, 2011 all proceeds from the sales of Good Grief!, are going directly to families in the middle of facing their own difficult trials: A thirty-three year old woman battling a relapsed cancer and two families adopting high medical needs children.

What my family is attempting to do is less about selling an eBook and more about tangibly coming alongside these three incredible families. If I can provide some insight through times of tragedy AND help meet these financial needs, my perspective is that this is a win-win situation.

More information is also available at my website.

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Thank you Erica. While we know your time is stretched so thin, you manged to write this beautiful piece. We wish you all the luck in the world mama!

So many of the families who experience pregnancy/infant loss have a strong desire to fall pregnant again. “The sooner the better” becomes their day-to-day tagline. We feel it is important to share stories from families that cannot try again. This particular story comes from our own Team Member, Susan F. It is one of our submissions from our Giveback Project.

Thank you Susan for pouring your heart out to us. I know this piece will help families dealing with a similar situation.

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“I was asked to write a piece for this project a couple months ago and I just did not know where to start – I think about it everyday and things really start sounding good, but then when I have the chance to start actually writing, my mind draws a blank.

Let me start by introducing myself. My name is Susan, the mother to four angels; Jordan Donise born at twenty-seven weeks, Alexander Michael, born at twenty weeks, Alisia Noelle, born at twenty-three weeks and Gabriel Ryan, born at twenty weeks and my one miracle daughter, Madyson Leah, born at thirty-eight weeks!  Those are the only children I will ever have.

Last November, I made the heartbreaking decision to have my tubes tied (tubal ligation) and put an end to the chance of another pregnancy. I knew deep in my heart and soul that for my own well being and to those around me that I could not go through losing another one of my babies. I have learned to live with the grief that surrounds me.  Anyone meeting me on the street for the first, even second or third  time would never know the pain that I have had to endure or the thoughts I have almost every day.

Growing up, I wanted at least two kids, a boy and a girl. Yes, I have that, but not the way I always wanted. Yes, I have had five beautiful babies, but that is all I will ever have. I have had to learn to live with knowing I won’t ever be able to be pregnant again when everyone around me seems to be getting pregnant.

I seem to be at the age where everyone has decided to start having babies or talk about it. I agree, it’s hard to be happy for someone that is pregnant and that can go on and have a successful pregnancy. I also agree that sometimes life just is not fair when we cannot have healthy babies, but someone who is sixteen and could care less about a baby has one.  I ask myself everyday why did I get dealt these cards? Did I do something in a past life to deserve this?  Am I really that bad of a person and I just don’t know it? But, on the other hand, I know that I didn’t do anything. I cannot change what has happened to me, but I can make a difference in what does happen to me. I can take each day and enjoy it the best that I can. My family deserves that.  I deserve that.

After we lost Gabriel, I knew that the only thing I could do was to get my tubes tied. It was a gut wrenching decision. I cried every night. Because of insurance reasons, surgery kept getting delayed, and it just made my grief all that much worse because not only did I just lose my child, I was starting to lose my relationship. My fiance and I grew apart. I didn’t want him to touch me, I was so scared to get pregnant again and have to go through yet another loss. I finally came to terms with everything and KNEW that my life wasn’t over, I could learn to live with the cards that I was dealt. Sure, I still think about wanting another baby, but know that I cannot.

My life is not over, not by a long shot.

I know each of you are thinking, I want another baby, I cannot wait six, or even three months to start trying, I want to be pregnant NOW.  You will probably always have those thoughts, but they do not have to consume you and do not let them!

Take time to grieve the baby you lost, renew old friendships, put more effort into new friendships, enjoy finding out why you fell in love with your significant other all over again, and most importantly take care of YOU!!  It’s not the end of the world if you cannot get pregnant right away, maybe it is your body saying you need to heal from the loss of your child before you can really enjoy the pregnancy of your next child.  Yes, I know that is one of those phrases everyone hates to hear, but you want to be able to enjoy your next pregnancy not worry each and every minute and let the best times pass you by! And if you are like me, and have chosen to not have anymore kids, it does get easier, each and every day.

Yes, I still think about wanting another baby, and always ask myself if I did the right thing, but deep down in my heart, I know I did.  My daughter is eleven now, getting ready for middle school, I owe it to her to not let my grief get the best of me. There are still some days that I cry for what will never be, but there are other days where I am thankful that I have had the chance to see my babies and be able to kiss them goodbye.”

Susan F.

Each month we will be publishing a personal, in-depth pregnancy and infant loss story under the title “The Raw Truth.” Releasing the intimate details of our pregnancy and birthing stories is a very important part of the grieving process, and for some it is not easy to share. This month we feature a story from Grieve Out Loud Co-Founder, Heather M.

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The Whole Story
Submitted by Heather M.

Our family’s story began on May 8, 2004, the day Nathan and I promised to love and cherish each other for the rest of our lives. As I made my vows to him, I hadn’t the faintest idea how our lives would change just over five years later through the birth of our daughter, Madelyn. In fact, neither of us envisioned ourselves as the “having babies” type. Our plan was to work hard, retire early, and enjoy the extra money we wouldn’t be spending on things like daycare, diapers, and college funds.

A few years into our marriage, I began to reconsider my stance against having children. Some of our friends started having babies, and I wanted that sweetness in my own life. Nathan was still no where near ready to even consider the idea of children, but he did let me get a cat. I enjoyed the new, furry member of our family, but she did little to squelch the desire that had sprouted in my heart for a child.

In late August 2008, I thought for a few brief days my wish had come true in the form of a surprise. My usually very predictable menstrual cycle was late, so I decided to take a pregnancy test. To my surprise a second line, albeit faint, appeared. I went straight to Google to see what I could find on faint lines, and everything I read said a line was a line. I was scared to tell Nathan as I knew this wasn’t something we had planned, but I was beyond thrilled.

That dream all too soon slipped from my fingers the next morning when the test was no longer positive. Several tests later, I came to terms with the fact that I wasn’t pregnant. I still don’t know if I ever was – I later discovered that the brand of tests I was using is notorious for making people think they are pregnant. I’ve even read stories of men getting positive tests with this brand!

Regardless of what happened, I was crushed. Yet something positive was born of the experience: spending a day thinking we were going to be parents changed both of us. Nathan realized that he wanted to have a baby after all, and we decided we would start trying to do just that after I finished my Masters degree in December 2009.

In January 2009, our plans were once again interrupted, as I discovered I was pregnant. While it was a surprise, we had been careless with prevention, so we weren’t nearly as shocked as we had been five months before. My previous experience made me cautious: I tested again every single day, multiple times a day, for over a week. Yet this time, it was different. Instead of disappearing, the second line got darker with each passing day. I went to the doctor for a blood test, and it showed that I was indeed pregnant with a due date of October 8, 2009.

My first trimester was easy enough, although I was constantly worried about miscarriage, eating the right foods, and following the pregnancy manuals I had collected to give my baby the healthiest start I could. I had an ultrasound at 7 weeks that showed everything was as it should be, but that the baby was measuring as due October 11 instead of October 8. Being an avid cycle charter, I knew this could not be correct. However, ultrasounds can be wrong by up to a week either direction, so no one was concerned except for me.

I had another scan in my 13th week, when my OB was unable to find the heartbeat at my regular appointment. He said that it was still early, but authorized an ultrasound for my peace of mind. Thankfully, the ultrasound immediately showed our baby’s tiny heart beating as it should. Yet, once again, I noticed a few things seemed to be off. This ultrasound was giving us a due date of October 13, meaning our baby was measuring even more behind schedule. I also noticed the “black area” around the baby wasn’t as large as in other ultrasounds I had seen. I later learned this was amniotic fluid. Our baby also did not move even once during the ultrasound. However, none of these things were severe enough to cause anyone concern. I was again reminded that ultrasounds can be wrong by up to a week, and I was told that sometimes babies do sleep during the ultrasound exams. Nothing was said about the amniotic fluid – it must have not been low enough for the doctors to worry.

My next ultrasound, the one that changed my life, was at 19 weeks 5 days, on May 19, 2009. I remember being very nervous the previous night. Even though I was small, I had not been feeling the baby move. We had heard the heartbeat several times via Doppler, so we at least knew she was alive. I was also concerned because at my OB appointment at 16 weeks, my doctor mentioned she was much lower than most babies were at that stage in pregnancy. He wasn’t concerned, but pointed it out simply because it took him much longer than usual to find her on the Doppler. However, Nathan reminded me that everything was probably fine. We had made it past the first trimester, and the chances of anything going wrong halfway through a pregnancy were slim.

When we were called into the ultrasound room, all of my fears were diminished as soon as we saw our baby’s beating heart on the screen. But then the ultrasound technician stopped what she was doing to tell us she needed to go get a doctor. While hearing those words was a little unsettling, we just assumed she needed help with something.

The ultrasound technician returned a few minutes later with a nurse practitioner who took a quick peek at the ultrasound screen, and then proceeded to tell us that our baby was measuring 3 weeks behind schedule and there was basically no amniotic fluid. They told us we were being sent to the Perinatal Center, which is where people go with high risk pregnancies. They couldn’t get us in for several hours, so we had to wait. At this point I was beyond scared and in tears. They escorted us out through a private entrance so we wouldn’t have to walk back through the waiting room in front of all the other happy pregnant women full of excitement: the type of woman I had been not even an hour earlier.

After what felt like an eternity, it was finally time for our next appointment. It didn’t take long to confirm what we had already been told: our baby was too small and there wasn’t even enough amniotic fluid to measure. They also told us there was probably a heart condition, and I needed to go to a pediatric cardiologist once the baby was a little bigger to get more information about that. We were then whisked away to speak with a genetic counselor, who educated us on various fatal chromosomal disorders. The biggest cause of concern was the lack of amniotic fluid. In the womb, babies swallow amniotic fluid, and doing so helps their lungs develop. Without it, it was very likely our baby would need NICU care after birth, even if everything else turned out fine. We chose to focus on the small chance that she would be fine. We were told our baby could die at any time, we could carry her to term only to have her die afterwards, she could live, but with severe disabilities, or there was the small chance she could live and all would be fine. The chance that all could be fine was the only thing that kept us going through that day, and through the months ahead.

I was sent home and ordered to go on bed rest and drink lots of water for two weeks, at which point they’d do another ultrasound to see if the amniotic fluid levels had increased. If so, it was likely that I was leaking fluid. If not, then we’d know the issue was probably with the baby and not with me.

It was a long two weeks, but finally the time came for my next appointment. We were told things had not improved. They sent me back to work on modified bed rest, and made plans to see me bi-weekly until our baby reached one pound in weight, which is the smallest size at which they can save a baby outside the womb. At that point, we would have a few more options.

Over the next month we lived from appointment to appointment. We went to the pediatric cardiologist during this time and it was determined our baby had an AV canal defect, which is most frequently associated with Down’s syndrome, and not the fatal chromosomal defects. However, the small size and low fluid were not associated with Down’s, so neither us nor the doctors could make any sense of it.

At 26 weeks, our baby finally reached the weight of one pound. We were given two choices at this point: we could continue with the bi-weekly appointments and me on modified bed rest, or I could be admitted to the hospital where the baby would be monitored constantly. We were told that with so little fluid around the baby, the chances of her going into distress were high. If I were home, we wouldn’t know it, and she would probably die. If I were in the hospital, they’d do an emergency c-section and try their best to save her. After much deliberation, we opted for hospitalization, hoping to give our baby every possible chance at life. On July 3, 2009, I was admitted. While our friends prepared for their Independence Day celebrations, I began what would become an eight-week stay in the hospital.

While in the hospital, our baby surprised all of the doctors and nurses. She never showed any signs of distress, and she moved much more frequently than most babies without fluid. She also seemed to be growing: she never regained the three weeks she had lost, but she never fell further behind either. Living in the hospital wasn’t easy, but I was able to find some advantages. The thumping of her heart was my constant background music, and I was given a gift of time to focus on nothing but my pregnancy and my baby.

In the eighth week of my hospital stay I was 34 weeks pregnant, and my weekly ultrasound revealed our baby had not grown much in the prior week. Since 34 weeks is typically the normal time to deliver babies in no fluid situations, they decided it was time to induce me. They gave me medications to soften my cervix on August 26, 2009, started me on Pitocin to induce contractions the next evening, and by the morning of August 28, 2009, I was in hard labor. I labored all day without making much progress. After begging and pleading for relief, they finally agreed to let me have my epidural, even though I was hardly dilated. My OB said that if I didn’t progress in a few more hours, he would come do a c-section.

Thankfully, the epidural relaxed me, and I finally started making progress. A few hours later, I was ready to start pushing, and at 10:22 p.m., Madelyn Rebecca was born. She was 15 inches long and weighed 3 pounds and 4 ounces.

The room was eerily silent as they handed her to the NICU team in my room. All I could do was pray that my baby would live. After about ten minutes, one of the NICU doctors told us things weren’t going well, and if she didn’t improve soon they would let us have her to share her final moments. Things didn’t improve.

It felt so surreal as they laid my baby girl in my arms for the first time. Her eyes briefly fluttered open to look at me, and then she closed them again, never to re-open. I couldn’t believe that at any moment, she would breathe her last breath. Nathan and I held her, cried, and then allowed the rest of our family to have that same opportunity. Several hours later the nurse took her so we could get some sleep, and they brought her body back to us the next morning so we could say good-bye one final time before I was discharged from the hospital.

Leaving without my baby was the hardest thing I’ve ever had to do.

The next week was spent making funeral arrangements. Instead of shopping for the stroller and baby bed we would have needed had she lived, we went shopping for a casket and headstone for her grave – something no parents should ever have to do for their child.

The night Madelyn was born, we signed papers authorizing the hospital to do testing on our daughter in an attempt to determine what went wrong. Initial test results showed that her chromosomes were perfect, which surprised all the doctors. Then, several weeks later, the hospital called with our autopsy results. It revealed several problems not seen on the ultrasound, and we were once again sent to a genetic counselor.

Based on the new information revealed through testing, our genetic counselor gave us a few possibilities, one of which was a recessive gene disorder called Smith-Lemli-Opitz Syndrome (“SLOS”). In order for this to have been the problem, Nathan and I would both need to be carriers. If only one of us was a carrier, it would not affect our children. We both tested positive, and we had our answer.

It was nice to have an answer, but it wasn’t the answer we wanted. When two people carry the gene that causes SLOS, there is a 25% chance in every pregnancy that both affected genes will be transferred to the baby, resulting in the child being affected with this disease. It isn’t always fatal, but it does always come with challenges, often both mental and physical. This greatly complicated our decision about future children.

We took several months to decide what we should do next, and then we learned about something called embryo donation. When people go through the process of in-vitro fertilization, they will often find themselves with more embryos than they need. These people are then faced with the decision of what to do with the remaining embryos. One option is to donate them to other families who are either unable to have children on their own or, as in our case, have genetic reasons for not doing so. I did a lot of research on the subject, and we decided this was the path we wanted to take for our next child.

In February 2010, I began calling fertility clinics, as I knew embryo donation programs often had long waiting lists. I was fortunate to find a clinic with no waiting list and very high success rates. In April 2010 I began my frozen embryo transfer cycle, and before the month was over I found out I was pregnant again, due in early January 2011. Several ultrasounds later revealed I was carrying a healthy baby boy.

We know our journey is far from finished. Every single day I find myself torn between love for both of my babies and the pain that still grips my heart at losing my first. Yet even when my pain is at its worst, I am grateful for the time I had with Madelyn. If given the choice, I would always choose this path, because she was in it, even if only briefly.

Each month we will be publishing a personal, in-depth pregnancy and infant loss story under the title “The Raw Truth.” Releasing the intimate details of our pregnancy and birthing stories is a very important part of the grieving process, and for some it is not easy to share. This month we feature a story from KP.

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When we found out I was pregnant in April of 2007, I thought to myself: “This one has to be it for us after all we’ve been through!” After a year of trying to conceive, I felt that this baby would be the healthy one, the one who made it. We suffered a devastating miscarriage in November of 2005 at nine weeks.  We have a son who was born in 2004 with a serious lung malformation and required surgery at six months of age. Although healthy now, there were times in my pregnancy where the doctors didn’t know if he would survive.

So when I finally got pregnant for the third time, I was certain that I wouldn’t be put through any more trials.  Hadn’t we been through enough?

I guess in retrospect, I had a feeling about that pregnancy.  Like something was off.  I didn’t seem to be showing as soon as I thought I would. I felt the baby move very early, so nothing stood out as being wrong, just off.

Because my first pregnancy had been extremely high risk, I was sent to see the perinatologists at the University of Maryland for my long-awaited twenty week ultrasound. Lying on the table while waiting for the technician to begin, we were so excited!  I couldn’t wait to find out if we were having a boy or a girl. That day we actually had a doctor and a technician working together. When the ultrasound began and the doctor was reading off the bone measurements to the tech to record, I remember thinking to myself, “How come the baby’s bones seem so small?” No one let on that there was anything wrong. The doctor happily told us that we were having a girl! The technician left to go run some things by the head perinatologist. Next thing I knew, we were shown into an office and the perinatologist was telling us that our daughter had something wrong with her. Her chest was too narrow. Her bones weren’t bright white. She wouldn’t survive. I couldn’t believe what I was hearing. How could this be happening? The doctor gently told us that we could terminate the pregnancy if we wanted to, otherwise there was a good chance she would be stillborn as her chest wouldn’t grow enough for her lungs to develop and her heart would not work efficiently.

It seemed like the weeks following that prognosis came and went in a blur. There was a second opinion at Hopkins which gave us a better diagnosis (osteogenesis imperfecta type II), though the same prognosis. There were the funeral arrangements, the prayer lists, the spreading of information to all the family and friends. Then the wait began. There was so much uncertainty. When would she pass? How long would we have? I haven’t felt her move today, is she gone already? We began grieving following her prognosis. All our hopes and dreams for our precious little one had changed. Now we hoped and prayed that she wasn’t in pain and that we would be given the guidance to make the right decisions regarding her care. Every doctors appointment had me wondering if that would be the appointment where they would be unable find her heartbeat. But they always did. Her arms and legs were too short for me to feel much movement except for when she would nudge me with her head. I cherished each and every movement, each time I got to see her on the ultrasound, each time I heard her heartbeat. I spent the remaining seventeen weeks of my pregnancy making memories to last me a lifetime.

At my ultrasound at thirty-five weeks, the doctors found that our little girl was starting to fail. Her heart had a big pocket of fluid around it and leaking valves. We knew our time with our daughter was growing short. We agreed that I would be induced at thirty-seven weeks, though we were told that there was only a 50% chance she would survive long enough to get to that point. Amazingly, she did.

On December 5, 2007, I gave birth to our daughter, Faith Elisabeth, weighing in at 2 lbs 11 oz.  She lived for ten minutes; long enough for her Daddy and I to say goodbye. She took a few haggard breaths and passed away in my arms.  After she passed away, all our family came in to meet her and hold her and say goodbye. We took pictures and loved on her until 10 p.m. when we agreed to let her go. I was released the next morning in my fog of grief. I recall saying to my husband, “How will I be able to go on without her?” My husband and I had a private viewing with her the night before her funeral. Her skin was so soft. I kissed my daughter goodbye for the last time. Leaving that funeral home was one of the hardest things I’ve ever had to do.

The word that comes to mind to describe the weeks and months following Faith’s death is weird. At times, I felt like I was drowning in my grief. That no one else knew what I was feeling. No one could help me. At other times, I felt like this cloak of normalcy and peace was covering me. In the beginning there was more of the drowning in grief than the normalcy and peace. As time went on, there was more normalcy and peace. It didn’t happen overnight, but gradually. Over time, and it did take awhile, I began to find the joy and the blessings in Faith’s short life. She changed my life- in a good way!  She taught me compassion and the power of prayer.  Considering the circumstances, we were given the priceless gift of time with her to say goodbye.

I still miss her everyday and wonder what she would look like at two and a half years old. She will always be part of who I am now and I feel like I’m a better person, a better mom, because of her. Thank you, Faith.

Each month we will be publishing a personal, in-depth pregnancy and infant loss story under the title “The Raw Truth.” Releasing the intimate details of our pregnancy and birthing stories is a very important part of the grieving process, and for some it is not easy to share. Some stories have been anonymous, some with name changes, while others will use real names. Some will have pictures. Some will be short, some will be broken up into different parts. All very personal and close to our hearts.

In sharing these stories with you, we hope to bring courage and light to loss. Although these might not be your typical story book endings, they are the stories of our lives – and we hope you find the courage in yourself to read and perhaps share your own one day.

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For The Child I Carried
Submitted by: Heather W.

When I remember the time before my pregnancy, I was resigned to the fact my husband and I would never be able to have children together.  Our prognosis of anovulation and low sperm count spelled in vitro fertilization, something we couldn’t afford and weren’t sure we wanted. Maybe we should just be content with the daughter he had from a previous marriage. My husband never gave up that dream but I truly did.  After so many heartbreaking months of trying, I completely and utterly gave hope back.

I began looking at websites advocating child-free living.  It wasn’t that I didn’t view my adopted step-daughter as my child, but I wanted and needed the support of those who controlled their decision to not make more children. It felt empowering.  I could even see it fitting into my values about the planet and our natural resources.  At times, it even appeared kind of fun and carefree.  We could focus solely on our one child and just be happy with the fact that our family size was never going to get any bigger.

Our inability to conceive a child was the reason I decided to join the military, go back to school, and contract with ROTC.  If I couldn’t focus my energy on making and having that baby I so desperately wanted, I needed something to replace that drive. 

I began the military and school thing in the Fall of 2008.  After a 21-credit semester with hard science classes, I managed to stay on the honor roll.  I loved how it felt to be challenged physically and mentally.  Yes, I thought to myself, this is exactly what I needed.  I worked very hard to maintain that high educational and physical standard for spring semester with a goal of getting into even better  shape than before.  I was so driven and determined that I was taking PT twice a day, three days a week.  Suddenly something changed in my body.  I fell behind on runs I hadn’t struggled with the first few weeks, and soon I was the last to finish whatever we were doing.  I thought maybe it was a sign of my age, that I just couldn’t keep up with 18, 19, or 20-year-olds.  That is, until, I experienced sharp abdominal pains unlike anything I’d felt before in my life.

I recently had a PAP smear and thought that maybe the doctor poked around a little too roughly, so I called and talked to them.  I asked to come in – they asked if I’d taken a pregnancy test.  What? I can’t be pregnant.  My husband and I were told the only way we’d have children was through in vitro.  That CANNOT be it. They convinced me to test anyway because if I was pregnant it would be cheaper to rule it out at home instead of at their office.  I conceded and immediately went to a nearby store to buy a test.

I tried to study for class that night but I couldn’t concentrate.  I know from all our months trying to conceive that I should wait until the morning to pee on a stick, but the box came with two tests… I’ll just try one now and then take another one in the morning. I walked back to my car, hastily read the instructions, and returned to campus with my plastic-wrapped secret in my backpack.  I went in the nearest bathroom, dutifully held the stick in a stream for 5 seconds, and waited for the liquid to cross through the window.  This is so stupid, I’m, NOT pregnant. I wonder why I’m having these weird symptoms… oh my god, oh my god, oh my god. There were two pink lines.

The shock overcame me and I burst into tears.  This was something I waited so long to experience, this was something I wanted since I was a little girl, this was something that eluded us for nearly 2 years when we were actively trying.  But why now??  Why did this have to happen as soon as I signed my life away to the military and made so many plans without taking a newborn into consideration??  I was MAD.  Mad at life and whatever twisted cosmic fate there was that wouldn’t allow us to get pregnant before, but as soon as I committed to the military THEN it decided it was the right time.  It felt as though we were given a miracle, and I don’t even believe in God. Our number got called, we were picked for the team, it just happened and it felt amazing.

Our baby’s first official picture at 7 weeks. He had a healthy heart pumping 154 times a minute.  It was awe-inspiring to see something so little and so fragile show signs of independent life so early.  The doctor said everything looked good as far as baby was concerned.  However, I knew something wasn’t right because I was spotting intermittently.  He said to take it easy and the placenta would attach properly in the coming weeks.

I went through typical pregnancy symptoms, loathing them when I had them and relieved at the time when they went away.  I mentioned to a girlfriend that my morning sickness was getting better at 10 weeks and her reaction was one of concern.  I had no clue that was potentially a bad thing.  Every woman is different, though, right?  Maybe I was one of the lucky ones who never actually throw up.  The girls, on the other hand, were swelling rapidly and HURT. SO. MUCH.  The spotting was still a concern, but one woman I talked to said she spotted throughout her entire pregnancy and went on to have a healthy baby.  I rationalized all my fears and tried very hard to put them out of mind.  My doctor offered to let me come in weekly to monitor the baby’s growth, but I didn’t want to burden by doing that.  Knowing everything I do now, it probably would not have affected the outcome, but I am aware now that in recurrent loss, studies reflect that a woman who receives frequent care from a physician has a greater chance of carrying her baby to term.

I shared the news and loved how it felt to say, “I’m pregnant!”  It was the same feeling I had as a newlywed when I couldn’t wait to say I was married or, “My husband this…” or “My husband that…”  It felt foreign and strange, like joining a club to which I thought I would never be invited.  At the same time, I was also terrified of saying it for fear that revealing it so early and getting my hopes up so high that it would somehow set things down a doomed path.  I remember verbalizing that fear to my husband before he called his mom.  Oh, the guilt we pile on ourselves when we think we have control over things.

At 10 weeks I spent time with a friend and we went walking around a local organic store I had never been to before.  We had fun looking at all the items not sold at chain grocery stores like soy pizza, organic chocolate, organic lipstick, even organic feminine products!  We bought chocolate and then left to hang out at her apartment.  Once there, we watched a movie and spent time enjoying each other’s company.  At one point I used the restroom and when I wiped my heart skipped a beat.  Bright red blood, that’s not good.  That’s bad… it’s bright red.  I have to lay down, I have to get out of here. I left as fast as I could, not mentioning the spotting for fear it would be more real, and I drove home straight-faced and in denial.  I had gotten so far, I made it to 10 weeks. Only a couple more weeks and I’m in the clear.  I just have to make it to the second trimester and then things will get better – must make it to the second trimester, DAMMIT. I laid down for several days. The spotting let up but it did not completely go away.

Right before our 12 week appointment I noticed a change in the spotting.  There were now tiny little clots but nothing bigger than a few millimeters.  Everything could still be okay, I kept telling myself, but when I shared my fears I was told I might be the problem – that popular medical websites suggested too much stress may cause a miscarriage.

The appointment…

They walked us back to the exam room and handed me a cup for to take to a nearby bathroom for a sample.  I told them I didn’t feel the urge and that I also had some concerns about spotting.  They sent me over to an ultrasound room to see what was going on before they wasted any time on a potentially non-viable pregnancy.  The tech tried an abdominal scan first but couldn’t see much.  I knew it right then and there.  When she left so I could prepare for an internal ultrasound I said to my husband, “It looked pretty empty in there.”  I braced for the worst.  She came in again and performed the other ultrasound.  She found the baby immediately which surprised me and made me smile.  There he was!  Just floating on the screen.  Wait a minute… he’s not moving, where’s his heartbeat?  He looks way too small.  Then the tech sighed and said, “Ohh, Heather, this doesn’t look good.”  She took some measurements.  “There’s no heartbeat, and baby only measures 9 weeks. I’m so sorry.”  She rubbed my shoulder and got me a tissue.  It was over.

I thought I steeled myself up for that moment but seeing my baby melted my dying heart.  I cried.  My husband held me.  The ultrasound tech escorted us back to the exam room and the doctor talked at length about our options.  I asked him why I carried our baby so long after he had already died.  He said that sometimes it takes the body a while to figure out it’s not pregnant anymore.

He gave us his pager number so we could contact him directly about what we wanted to do after this point.  Either we could go the natural way or I could have a D&C. 

The next few days were spent keeping people at bay.  I didn’t want to talk to anyone.  I didn’t want to see anyone because I didn’t want to come unglued.  I didn’t want to have to act strong when I broken.  I didn’t want to face that it was coming to an end. I didn’t want to lose our baby!  I felt terribly conflicted over the fact that I was mourning the dead child I was still carrying.  After three agonizing days, I finally asked for the D&C.  It scared me that I was going to have my uterus scraped and my baby discarded in a biohazard waste bin.  As we prepared for it April 15th, 2009, I began feeling strong cramps.  My abdomen felt like a tight fist, I could feel my uterus contracting.  I took Advil, a medicine I painstakingly avoided the past few months, in bitter acceptance of what would come.  I took the first and last photo of my pregnant belly, and I asked my husband to be with me.

Twenty minutes later it happened.  Like the whistle on a tea pot, the pressure built until there was nowhere for everything to go but out.  It was sudden and profuse, and painfully emotional.  I thought the worst part was finding out our baby was dead.  No, the worst part was giving birth to a baby long before he was due.  In a toilet.  I felt ashamed that not only did my body fail to provide a nourishing environment for my baby to live, but that I was giving him such an undignified end.

The blood, dear god, the blood.  It sounded like someone had turned a faucet on.  We almost went to the hospital but the on-call doctor advised us to wait an hour and if it was still going that strong then to go ahead and come in.  It is fairly normal for someone as far along as I was to experience a lot of bleeding in those first couple of hours.  I soaked pads as soon as I stood up, so I spent most of the night in the bathroom on the toilet.  I frantically scoured the contents of my womb in the toilet.  I was obsessed with finding anything that might look like a baby or placenta.  It was gross and it was weird, but I didn’t care.  I saw one clot that contained gray tissue but it looked like a string.  As I reflect on it, that was the umbilical cord.  Not long after that, I bore down and passed a large amount of tissue.  Sure enough, my baby was there.

I sobbed harder and louder and submerged myself in grief.  I told my husband he could come in if he wanted to, but I wasn’t sure he would want that.  He was outside the door the entire time and I could hear him weep.  He came in and he saw our baby in my hands and it just tore him up even more.  I was strangely comforted in knowing I wasn’t going through this alone, and the love I had for him grew in that moment because it wasn’t just my loss, it wasn’t just my pain.  This was hurting him, too.

I didn’t know what to do with the baby.  Who talks about that sort of thing?  Who prepares you?  I hastily posted a message online asking for advice and several women immediately replied.  They said I could put him in a shoebox and bury him.  Or plant a tree in remembrance.  And they were so sorry and really meant it.  It helped to know they’d been there before.

I placed cotton balls inside a shoebox and laid our baby on a tissue floating on top.  I covered him with a clear plastic bag.  I wanted to remember him like that.  I needed to take a picture.  I secretly grabbed the camera, embarrassed my husband might see me and think I was acting crazy.  The urge was too strong to ignore.  I’m never going to see him again, this is my only chance to memorialize him.  Come to find out, taking a picture of your baby is quite common, and I don’t regret it.  Instead of one picture, I now have two.  Until recently, I really only looked at him with sadness, but a dear friend recently told me that when she looked at my little peanut that he was beautiful.  That he grew from the love my husband and me share.  That’s how I want to remember him, and that’s why I’m sharing him.

Mommy and Daddy love you, Pumpkin.