Moving from Anguish to Advocacy, After my Miscarriage
BY MANIKO BARTHELEMY
July 30, 2019
July 30, 2019
(Baton Rouge, LA)- Imagine delivering a baby you know is immediately going to heaven and finding out after delivery, your child wasn't considered old enough for a death certificate. That's exactly what happened to me and motivated me to change the law in Louisiana.
Prior to Louisiana State Rep. Steve Pugh, R-Ponchatoula, introducing LA House Bill 177, mothers in the state, like many across America, only qualified for a death certificate if their baby was stillborn at or after 20 weeks of gestation. Effective August 1, 2019, Louisiana mothers who miscarry at any time during her pregnancy have the option to pay for a stillbirth
certificate. Florida is the only other state in America with a similar law.
So, why the change in Louisiana and why now? Until September 7, 2017, I was clueless to Louisiana's definition of stillbirth. I'll never forget the blank look on the nurse's face, when she said, "Let me get the doctor." The maternal-fetal physician came into the room, looked at my stomach, looked at the ultrasound machine, and there was an odd silence before he turned to me and said, "There's no heartbeat."
I was numb. I had clearly heard the doctor's words but thought, hoped and prayed by some small miracle, he was wrong. In the detached way some medical professionals attempt to express compassion, he said, with his head tilted to the side, staring at me, "I don't understand what went wrong."
But an avalanche of cold statistics did not add any level of comfort. According to the March of Dimes, 10 to 15 out of every 100 pregnancies end in a miscarriage. Primarily, the first trimester is the danger zone and if the mother is older than 35, risk factors escalate.
Despite glaring hard numbers, we were happy and hopeful. Karter was a surprise and a bit of a secret. My husband and I told our daughter, immediate family and our close friends. Everyone we told, had a perplexing look on their faces before saying something supportive. It was hilarious.
Kayla, our daughter, was anxious. She actually gave Karter his name, which, according to www.TheNameMeaning.com, means transporter of materials. "Finally, I get a little brother," Kayla said. I'd imagined Karter growing up and becoming a powerful attorney. My husband saw baseball and wrestling in his future.
Overall, I was healthy but my age made a healthy delivery touchy. Doctors visits were different and difficult, honestly, scary. In addition to seeing a gynecologist for routine check-ups and observations, I met monthly with a maternal-fetal specialist. That always bothered me. Still, I precisely followed instructions given to me by both doctors about restrictions, diet and exercise limitations and minimizing stress at all costs. Ultimately, dreading the real possibility of a miscarriage.
Sadly, our plans to expand our family and watch Karter grow into a wonderful young man, surrounded by a strong supportive network did not become a reality. September 8, 2017, the day after I got the heartbreaking news, I was in a pre-term labor. It lasted several hours. Having my family in the room, telling jokes and teasing me about all of the things I couldn't eat, helped a little. However, the harsher each labor pain hit me, the more withdrawn I became, bracing myself for he inevitable.
Finally, I looked at my husband and said, "I'm tired." I was. I was tired of the nurses coming into the room for what seemed every 15 minutes, checking my vitals, changing my IV, giving me medication, etc. I guess God and Karter knew I couldn't bare the pain much longer. I felt him coming into the world and ordered everyone out of the room. I was right. Within a matter of minutes of clearing the room, I delivered him. His birth was pulchritudinous and melancholic.
Once I delivered Karter, a nurse said he wasn't old enough for me to get a birth or death certificate. I was baffled, devastated and furious. Immediately, I thought the nurse was mistaken. The reporter in me anxiously awaited getting home to heal and scour the Internet again, researching birth certificates, or at least some form of an official Louisiana recorded acknowledgment of the life and death of all miscarriages. If the state allowed me to hold a funeral for Karter and to even bury his body, why didn't his life equal official recognition? That's when I discovered the jarring truth. The nurse was right. In Louisiana, a baby was only considered stillborn, if the mother miscarried at or after 20 weeks of pregnancy.
Luckily, at the urging of my mother-in-law, a hospital chaplain baptized Karter, which meant we got his baptismal certificate. Additionally, a hospital photographer took excellent care to capture Karter on-camera. The hospital gave us the photos as keepsakes. None of it was enough to stop me from wondering and worrying about mothers who do not come from religious families or may be too distraught to remember to ask for their stillborn baby's baptism. That was awful. Knowing there's a chance the next Louisiana mother who miscarried would essentially not have a document confirming her baby's short life, if the child was born, like Karter, too soon according to existing state law.
Losing Karter was something I'd feared but didn't voice. In my heart, I knew something and someone had to ensure Louisiana redefined stillbirth. January 1, 2019 marked the one year anniversary of my family planting a Magnolia Tree in our backyard as a living memorial to Karter. I still had to do more. The tree, the photos and the baptismal certificate were all helpful but something else needed to happen to help other mothers cope with the loss of their infant child.
With research in hand, my personal story, and passion to make a difference, a few days into the New Year, I visited State Sen. Pugh, shared my story with him and he did everything else. I know getting full support of House Bill 177 was daunting and I followed the bill's progress from the first day of the Louisiana Legislative Session in April, tracking its movement through the system weekly. When I got the alert June 4, the bill landed on the governor's desk after months of legislative drafts and he SIGNED it, first came the silent scream with clenched teeth and then an outburst of joyful tears.
The new law, https://legiscan.com/LA/bill/HB177/2019, gives any Louisiana mother who delivers a stillborn child at any point in the pregnancy, the option to request and purchase a certificate of stillbirth. In a strange and satisfying twist of faith, Karter is living up to the definition of his name. For that, I'm ever grateful. While I know the law helps women I'll never meet, I'm comforted knowing my son's birth was truly divine intervention and he's in heaven proud of his mother.
If you know anyone who's having a difficult time grieving the loss of their infant child, please visit, https://www.verywellfamily.com/miscarriage-support-organizations-2371339.
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| Louisiana State Rep. Steve Pugh, R-Ponchatoula, joins me in holding a ceremonial copy of LA House Bill 177. Shortly after meeting with Rep. Pugh in January, expressing the need for a new Louisiana law redefining stillbirth, he drafted and introduced new legislation in April. (Photo taken by Kayla Barthelemy.) |
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| Karter Barthelemy at eight weeks of gestation. |
I was numb. I had clearly heard the doctor's words but thought, hoped and prayed by some small miracle, he was wrong. In the detached way some medical professionals attempt to express compassion, he said, with his head tilted to the side, staring at me, "I don't understand what went wrong."
There was nothing left to say. I'd suffered from placental abruption. My placenta separated from Karter, leaving him with no oxygen. The next step was deciding whether to immediately go into preterm labor and deliver Karter that same day or wait. I waited. I wanted to talk to him a little more. I needed to have another day to talk to him. With the exception of my daughter, Karter is the only person who knows how and why the rhythm of my heart, happiness and hurt fall into or out of place.
In June, 2017,
when the doctor confirmed my pregnancy, my emotions were a combination
of awe, worry and agitation. Only my husband knew I meticulously
followed every precaution doctors instructed me to take. After all, I
hadn't changed a diaper in 18 years and at 45, becoming a mom again
definitely shifted me into a new nervous normal.
From the moment I heard Karter's heartbeat for the first time, I evolved
into a researching machine, relentlessly reading articles about high
risk pregnancies. Finding information about middle-aged moms and pregnancy survival rates, nearly became an
obsession with news stories, studies, special reports, documentaries, etc.
But an avalanche of cold statistics did not add any level of comfort. According to the March of Dimes, 10 to 15 out of every 100 pregnancies end in a miscarriage. Primarily, the first trimester is the danger zone and if the mother is older than 35, risk factors escalate.
Despite glaring hard numbers, we were happy and hopeful. Karter was a surprise and a bit of a secret. My husband and I told our daughter, immediate family and our close friends. Everyone we told, had a perplexing look on their faces before saying something supportive. It was hilarious.
Kayla, our daughter, was anxious. She actually gave Karter his name, which, according to www.TheNameMeaning.com, means transporter of materials. "Finally, I get a little brother," Kayla said. I'd imagined Karter growing up and becoming a powerful attorney. My husband saw baseball and wrestling in his future.
Overall, I was healthy but my age made a healthy delivery touchy. Doctors visits were different and difficult, honestly, scary. In addition to seeing a gynecologist for routine check-ups and observations, I met monthly with a maternal-fetal specialist. That always bothered me. Still, I precisely followed instructions given to me by both doctors about restrictions, diet and exercise limitations and minimizing stress at all costs. Ultimately, dreading the real possibility of a miscarriage.
Sadly, our plans to expand our family and watch Karter grow into a wonderful young man, surrounded by a strong supportive network did not become a reality. September 8, 2017, the day after I got the heartbreaking news, I was in a pre-term labor. It lasted several hours. Having my family in the room, telling jokes and teasing me about all of the things I couldn't eat, helped a little. However, the harsher each labor pain hit me, the more withdrawn I became, bracing myself for he inevitable.
Finally, I looked at my husband and said, "I'm tired." I was. I was tired of the nurses coming into the room for what seemed every 15 minutes, checking my vitals, changing my IV, giving me medication, etc. I guess God and Karter knew I couldn't bare the pain much longer. I felt him coming into the world and ordered everyone out of the room. I was right. Within a matter of minutes of clearing the room, I delivered him. His birth was pulchritudinous and melancholic.
 |
| Shortly after delivering Karter, I held him and talked to him until I got tired. I studied his features from head to toe. |
Once I delivered Karter, a nurse said he wasn't old enough for me to get a birth or death certificate. I was baffled, devastated and furious. Immediately, I thought the nurse was mistaken. The reporter in me anxiously awaited getting home to heal and scour the Internet again, researching birth certificates, or at least some form of an official Louisiana recorded acknowledgment of the life and death of all miscarriages. If the state allowed me to hold a funeral for Karter and to even bury his body, why didn't his life equal official recognition? That's when I discovered the jarring truth. The nurse was right. In Louisiana, a baby was only considered stillborn, if the mother miscarried at or after 20 weeks of pregnancy.
Luckily, at the urging of my mother-in-law, a hospital chaplain baptized Karter, which meant we got his baptismal certificate. Additionally, a hospital photographer took excellent care to capture Karter on-camera. The hospital gave us the photos as keepsakes. None of it was enough to stop me from wondering and worrying about mothers who do not come from religious families or may be too distraught to remember to ask for their stillborn baby's baptism. That was awful. Knowing there's a chance the next Louisiana mother who miscarried would essentially not have a document confirming her baby's short life, if the child was born, like Karter, too soon according to existing state law.
Losing Karter was something I'd feared but didn't voice. In my heart, I knew something and someone had to ensure Louisiana redefined stillbirth. January 1, 2019 marked the one year anniversary of my family planting a Magnolia Tree in our backyard as a living memorial to Karter. I still had to do more. The tree, the photos and the baptismal certificate were all helpful but something else needed to happen to help other mothers cope with the loss of their infant child.
 |
| A Magnolia Tree sits in our backyard in memory of Karter. |
 |
| Gov. John Bel Edwards signed HB 177 into law during the 2019 LA regular legislative session. |
If you know anyone who's having a difficult time grieving the loss of their infant child, please visit, https://www.verywellfamily.com/miscarriage-support-organizations-2371339.
In addition to becoming an advocate, I have even more good news to share. Karter also is the reason I ran my first 5k, a few days after his birthday in September 2018. We wanted to do something that was unique and still impacted people on behalf of Karter. The Hope for Hemophilia organization supports people who are born with a blood deficiency, http://www.hopeforhemophilia.org/what-we-do.html. The organization hosts several seminars and fundraisers throughout the year but the annual SuperHero run/walk was perfect for us, http://www.superherohope.com/. It's become Karter's unofficial birthday party, allowing our immediate family to participate as runners or walkers in his honor.
The Superhero Run, held annually in September, is the perfect way for us to contribute to a worthy cause as we keep Karter alive. Here's a link to the organization, if you'd like to join us this year, https://www.louisiananorthshore.com/event/superhero-fun-run-walk-benefiting-hope-for-hemophilia/337/.
I'd love to hear from you. Feel free to publicly comment here or privately e-mail me at NewsHeels@Gmail.com.
This was the most beautiful story I've ever heard. I am literally speechless right now. I remember when this happened. You had not been working at UL for very long when you called and told me what happened. I did not know at the time, everything you were going through and how incredibly strong you were about to become in order to change this law. Heck, I didn't even know this law existed! I am so incredibly sorry about Karter. But, I know he knew what a very special mother he had and still has here on earth. I so admire you Maniko. You never cease to amaze me with your strength!!
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