Loss Stories
These loss survivors bravely share their stories in the hopes that through their common losses, change can occur. If you have had a stillborn baby due to an undetected small placenta, we would be honored to share your story and your baby on this website. Contact us.
Eli 8/27/22
Harmony 7/4/22
Grayson 4/26/22
Hugo 10/21/21
Aaliyah 12/1/20
Rhoan 3/5/20
Charlotte 11/8/19
Greyson 3/15/19
Junie 8/9/18
Elijah 7/2/18
Naomi 4/23/18
Luke 8/21/15
Neville 5/25/13
Our Babies
Eli's Story by Allison and Tim
Our firstborn son Elijah was stillborn just two days before his due date on August 27, 2022, after a completely healthy pregnancy with no complications. We were shocked, since stillbirth was not discussed with us, to later find out that it happens to 1 in 160 births, that’s over 23,000 babies dead in the US every year. Our local hospital was useless and told us the lie that “sometimes healthy babies just die” despite the fact that the pathology report showed that his placenta was so small that it measured in less than 1% percentile, on top of an undetected tight double nuchal cord.
We turned to Dr. Kliman, a top Yale MD and researcher for an independent placental pathology analysis and he confirmed that his cause of death was from an undetected small placenta as well as a maternal fetal hemorrhage from cord compression. Despite knowing the cause of death from both our local hospital and one of the top placental pathologists in the country, Ivinson Memorial Hospital in Laramie, Wyoming, listed the cause of death as unknown. Not only was this personally extremely hurtful, but since the US is the ONLY developed country in the world that doesn’t have a national system to report and investigate stillbirths, this meant that Eli’s death would not help other families to prevent this by showing his true cause of death.
In our case, his death could have been easily prevented by doing a quick, 30 second measurement of the estimated placenta volume (EPV) on a standard ultrasound. Training for this is provided for free on measuretheplacenta.org, and the president of The Society of Maternal Fetal Medicine (SMFM), Dr. Joanne Stone, who is also the head of all OB/GYN’s at Mt. Sinai Hospital and runs the Rainbow Clinic, does EPV on all her patients. If it’s good enough for her, it should be good enough for any doctor.
The number one cause of stillbirth is due to an undetected small placenta, and it is also the most easily preventable. Despite medical innovations, stillbirth has remained relatively unchanged. The US's "progress" at lowering the rate of stillbirth ranks 183rd out of 195 countries globally because the US refuses to research causes of stillbirth to help prevent them since this would mean ACOG and OB/GYNs would be held accountable for their care and for implementing the latest research instead of letting thousands of babies die from fear of litigation. In my opinion, it is not only a crime against humanity that the US’s statistics and research on stillbirth are so bad, but if the research was implemented into protocols and EPV was measured, we could have saved our sweet baby Eli by seeing that he has a small placenta despite him growing fine, would have done an early induction, and he might be here today. In addition to that, his cord was never looked at.
Wyoming and the rest of the US needs to implement additional research into stillbirth prevention so families can be saved from going through the unspeakable grief of hearing that your baby has no heartbeat, and then having to give birth to your dead baby full term only to see that he was perfectly formed and his death was preventable.
Harmony’s Story by Dustin Jesberger
“Wow- that placenta is really small.” – C. Michael Weldon-Linne, MD. Retired pathologist and grandfather to Harmony Noelle Jesberger, stillborn on July 4th, 2022.
My wife is a planner, and wanted to make sure we had everything in our nursery room measured. We had to be sure to paint, set up the furniture, and add essential items to provide for comfort and warmth during those late nights spent with a nursing baby. Her father and I made sure to measure everything twice. Measure the space for the crib, find out if the rug will fit, and save room for a swivel chair that was measured to be big enough to fit a parent, a toddler, and a baby.
When the room was finally painted, we all gathered to decorate the room, and share our dreams of our baby girl, Harmony Noelle. Our dreams were focused on how she would play with our daughter, Eirene, what kind of interests she might share, and what surprises she would have in store for us. Our first daughter, Eirene, was born after her due date, and had been a complicated delivery. My wife lived in constant fear of another complicated labor and delivery, and I ensured her that I just knew this time it would be an easier delivery. Every night, I would tell her that at the end of her delivery, we would sit and say, “That first one really was so much worse.” This time, there would be no need for a magnesium drip, no need for bed rest, and no meningeal headache from an epidural gone bad. We had a plan, we had experience, and we had a team that we trusted to provide for our baby and my wife.
On June 29th, 2022, my wife was complaining of a headache and floaters. She had experienced severe pre-eclampsia at the 41st week of her first pregnancy. Being a trained medical professional, I checked her blood pressure with a manual cuff to compare it to the outrageously high number on her automated cuff. 139/110 was my first reading.
“I must be wrong! That number is bizarre. Let me measure again.”
138/108. Still not great. We dropped our daughter at her grandparents’ house, told her we might be coming home in a few days with a new sister, and kissed her goodbye. My wife was terrified. Memories of her spinal headache from a lumbar puncture flooded her brain. Fears of dying in delivery were now visceral and real.
“Am I going to see Eirene again?” she asked.
“Of course, and with a new baby.” I added.
We called the attending on call and asked if we should bring her in. Not wanting to be overly cautious and labeled as a hypochondriac, my wife took the time to call him if that number warranted a visit to labor and delivery. We were already in the parking lot. He, of course, said that number was concerning and would need monitoring.
We marched our way down the never-ending hospital hallway to labor and delivery, getting lost a few times along the maze of the enormous hospital building. I thought that at least I would remember the way out when getting the car to put our daughter in to go meet her sister.
When we arrived, Alyssa was taken immediately in for monitoring. The first blood pressure reading was high, but not close to my measurements from home. 128/88. High, but not past a cut-off score. The resident physicians came in, and I explained that I take blood pressure daily at work, and found her number bizarre. They stated that since she had experienced pre-eclampsia before, that she was going to be kept for 8 hours of monitoring of blood pressure, and that they would also be monitoring the heart rate of our baby girl.
“We are going to end up meeting her tonight.” I sheepishly said to my wife.
I was excited, but knew that my wife was going to be terrified at those words.
At this point, my wife was 38 + 2 weeks pregnant. Our first daughter was born at 5 lbs. 14 oz, and had swallowed meconium prior to delivery. Coupled with Alyssa’s pre-eclampsia, I thought there was no way they would let us leave the hospital.
Much to my surprise, my wife’s blood pressure started dropping to normal levels. A simple dose of Tylenol was enough to reduce her headache, and with her headache relieved, her numbers kept dropping.
120/84…118/80….108/76. She denied seeing floaters. She denied having any pain or discomfort. At 3 am on June 30th, we were discharged. Before we left, a new attending came in to discuss induction of labor.
“With your previous history, low birth weight of your previous daughter, and reduced fundal height, I am going to recommend we induce labor on July 4th.”
We asked why they would wait an extra five days.
“The safest place for your baby to be is in the womb,” The doctor reassured us.
July 3rd, 2022. The night before, my wife went to bed early. It was two days before her likely induction, and she was tired, but didn’t have a headache. Her blood pressure was normal, and she had no other issues. When she woke up on July 3rd, she asked if she could go back to sleep, as she felt a crushing fatigue. We were planning on going to the birthday party of a 6-year-old friend of our daughter’s that afternoon. I agreed to take our daughter for a bike ride, get her fed and ready for the party, and let my wife rest. As she rolled back to sleep, she mentioned that Harmony wasn’t kicking as much as she normally did in the morning. I asked her if she was concerned, but, she said they were both tired.
On our way to get a donut, my daughter was nearly hit by a speeding truck in an alley way. She was shaking and hysterically crying because both the driver and I yelled so loudly. He apologized, and stated that he was on his phone. The thought of losing her crossed my mind, but I quickly put it to rest when she asked, “Do I still get a donut?”
“Of course you do! We are celebrating birthdays this weekend!”
When we got home, my wife immediately asked me if we should go to the party. “Harmony hasn’t moved much, at all, this morning.” I asked if we should go the hospital now. “No, I will try my usual tricks- I will have some cake, a cold lemonade, and wake her up.”
Parking our car at our friend’s house, we could hear the party was in full throttle. The sounds of kids screaming, playing, and splashing in a pool filled the air. My wife ran inside to get a cold lemonade, and quickly drank it. We pretended to be fine, but confided in our best friend that we were a bit worried.
“Don’t worry, if you have to leave, we will make sure Eirene is having fun.”
After eating cake, my wife told me that Harmony still hadn’t started kicking. Shocked, I ran inside and told our friend we were leaving immediately. I informed Eirene that she was going to stay and have fun at the party, and that maybe tomorrow she would meet her sister! She kissed me goodbye and immediately ran back to play with the other children.
On the way to the hospital, I told my wife that we were going to meet Harmony. There was no way they would send us home again. Trying to make her laugh, I told her I regretted not taking a shower before the party, as I was now covered in more sweat and would have to stand next to her during labor and delivery in my own filth. She was gripped with fear.
When we arrived, we were immediately sent to the triage room for monitoring. The nurse quickly hooked my wife up the monitors. Silence. “These monitors sometimes are really hard to get right.” Remembering the sound of her heartbeat for 8 hours from 5 days before, the silence felt like it was screaming. The only sound I could hear was the panting of my wife, who was putting the pieces together. Quietly, the nurse called the resident, KP, into the room with an ultrasound.
KP searched, and searched, and searched. Neither she nor the nurse spoke a word. The silence was now suffocating. My eyes were popping out of my head. She stepped away to call in the chief attending.
Within 10 seconds of viewing the ultrasound, the attending physician stepped back, and let out a deep breath.
“I can detect no heart beat.”
The team left the room so that Alyssa and I could let out primal screams of agony. We writhed in pain. I told her I was sorry over and over again. After we settled down, the nurse delivered the second part of the bad news. Alyssa would have to be induced, and deliver our dead baby overnight. We begged to allow our family to come visit, and the team agreed to allow her mother and father in the room with us to comfort us during the labor and delivery.
I was moved out of the room and spoke with my parents in Ohio. I begged them to leave immediately so I could hug them. Within 6 hours, they had arrived at the hospital. At that point, Alyssa was induced.
During her labor, she requested an epidural to numb her to the physical pain. I asked to remain in the room with her, as I stick needles into patients daily and have an iron stomach. Within a minute of watching my wife being stuck, I was on the floor and being coached to remove my socks, breathe deeply, and feel the cold floor with my head, body, and feet. When her pain was still unbearable, the resident anesthesiologist decided to give my wife a large bolus of fentanyl. Since it posed no risk to our baby, he said he was certain to provide numbness to the pain. Within minutes, my wife was in a stupor. This time, she had no spinal tap. Her pain was gone. No headache, no searing pain, nothing.
During this entire time, her blood pressure remained normal. Her heart rate was cooperating. This labor was going well. It was easier, in every physical way. Labor was quick, and brutal.
Harmony was born around 8:30 am, honestly, I don’t remember the exact time. The silence in the room once again was deafening. The only words I remember hearing was a passing comment from my father-in-law, a retired pathologist.
“Wow- that placenta is really small.”
Because my wife had displayed two readings of elevated blood pressure during her hospital visit, one immediately after finding our daughter was dead and one during the throws of delivery, she was diagnosed again with pre-eclampsia. That meant we were forced to wait in the hospital for 48-72 hours.
I am not sure Hell exists, and don’t believe that any higher power would punish their creation for eternity if it did. But, I know what Hell-on-Earth looks like. It’s the face of your dead baby, one that looks exactly like your first child. It’s the sight of that living child staring at that dead baby, and realizing she is too scared to hold her sister. It’s the feeling of knowing that your daughter won’t be the first to hold her in our home. It’s the sight of watching your dead baby be wheeled away to the morgue.
Before we left the hospital, the resident who helped decide to send us home came to visit us. She was trying her best not to cry. She shared the most human moment I have ever witnessed in medicine. “I have reviewed your strips from the monitor 100 times since this morning. I came to the same conclusion every time. Nothing in those strips said your baby was in danger.”
After months of legal and ethical debate, we finally received an answer and explanation of what danger Harmony was in. It was December 7, 2022, and we were on a Zoom call with Dr. Harvey Kliman. We tempered our expectations. We understood that most late-term stillbirths were considered insidious. Prior to our meeting, we reviewed his report, not fully grasping what the numbers meant. Even the retired pathologist, Dr. Mike, was left with the belief that Dr. Kliman would essentially state that her death was insidious.
After Dr. Kliman’s insightful lecture, we learned that she our daughter was in grave danger when we visited the hospital on June 29th. At the time of her birth, her fetal weight to placental weight ratio was 30:1. In the words of Dr. Kliman, her placenta was a Toyota engine trying to run the 18-wheeler that her fetal body had become. She was small in gestational weight, just like her sister, but her placenta was in the 0.5 percentile. Her placenta was an efficient, overworked, and stressed tissue. It was fighting to keep her alive, and when her cord become compressed on July 3rd, it was the boulder thrown on the thin ice. She had no chance.
After meeting with Dr. Kliman, I have thought endlessly about the resident sharing her deepest regrets with her. I am not bitter, angry, or resentful to her. Quite the opposite. She was a human being, admitted that she felt the responsibility of our daugther’s death, and wished she had something to save her life. Estimated Placenta Volume is a tool that she needed to make a more informed decision. The strip of Harmony’s heartbeat told nothing about the fragility of her state. A simple 5-minute measurement could have saved us an 8-hour hospital monitoring, could have saved the physician from torment, and could have saved the life of our beloved daughter.
Ever the planner, my wife is insisting if she gets pregnant again, that we must of course, measure, measure, measure the EPV. I can only hope that ACOG agrees and adds it to the standard of care.
Grayson’s Story by Laken Dean
On December 2nd, 2021, I found out that I was going to be a mom. This was my first baby and I was so excited. My son Grayson Stone was supposed to arrive July 22nd, 2022. My nightmare began at the end of April when Grayson was just 27 weeks and 3 days gestation. On a Friday I hadn’t felt him move much. He was usually on a schedule and very active anytime I ate, and then again right before I went to bed every night. I waited and waited but then I felt him move before I went to sleep on Friday, and I felt satisfied with that.
The next morning I woke up with a fever so I took a Tylenol pm and later on that day the fever had broke and went away. Because the Tylenol pm makes you sleepy, I figured Grayson was probably just drowsy himself. I had taken a Benadryl once in my pregnancy and he didn’t move for a bit, and I was told it was normal and that some medicines like that could make the baby sleepy. I was also told that around that week of gestation the baby is dropping lower so I thought it may just be harder to feel his movements. Just for peace of mind, I used an at home doppler. It was hard to find something at first, but after drinking some juice I heard the heartbeat racing. Since I had that reassurance I thought he was okay.
By Sunday night I was still worried because there was no movement, but I heard his heart so I thought everything was fine and I was a first time mom so I didn’t know any better. My whole pregnancy my doctors or other people would make me feel crazy. I remember one time apologizing to my doctor because I always asked so many questions and i said I’m sorry I’m just so anxious and she said “oh, we know.” and I often felt dismissed by everyone because I was a first time mom. I trusted my gut and finally called and my doctor said to come immediately. When I got there I was told “the reason we can’t find your baby’s heartbeat is because there isn’t one. I’m sorry.” The induction process started the next day and then I delivered my beautiful stillborn baby boy on April 26th weighing 1 pound and 5 ounces and measuring 12 inches long. Grayson was a perfectly healthy baby and the doctors could not figure out what happened.
Finally almost 2 months later, we received his autopsy results. Intrauterine Growth Restriction. Grayson’s placenta was not giving him the proper nutrients that he needed to survive. At birth it was discovered that Grayson was less than 1 percentile. Because I was not considered high risk and he was measuring fine at past appointments, I was not closely monitored.
I thought “how could so much go wrong in such a short amount of time?” We had just had an ultrasound the first week of April. Only then I found out when I asked my doctor, the last time they measured him was March 4th at his 20 week scan. At that time he was 30th percentile. A small baby, but not anything to worry about. If I had knew then what I know now, I couldn’t help but wonder if things would be different. It is so important that we measure the placenta every time! It could save a life. I love and miss you so much Grayson Stone, but I know I will go to you one day and we will be together forever.
Hugo’s Story by Jennica Hill
My son Hugo died on October 20, 2021 from a small placenta that could no longer sustain him at nearly 39 weeks gestation. I gave birth to his beautiful body, 6 lbs 15 oz, 19.5 inches long, on October 21, 2021. And this is our story, in hopes that we can advocate to save other babies and parents from the same tragic outcome.
A “Healthy” Pregnancy
On February 19, 2021, my partner and I found out I was pregnant with our first baby. But I actually knew he was on his way before that. I felt his little soul tap me on the shoulder, telling me it was time to be ready already! I felt such a strong connection to him throughout my pregnancy, and even though we waited until he was born to find out his sex, I knew he was going to be a boy, our Hugo.
My pregnancy was relatively “healthy,” so much so, that I was set to give birth at a birth center, where I was hoping to have an unmedicated birth in a tub - a dream I later realized would never be my reality. Every appointment showed a healthy baby, other than a marginal cord insertion, which we were told was a risk but would probably be fine, and a healthy me. My blood pressure never spiked or dropped too low, and Hugo’s heartbeat was always strong. He was also a pretty active little one, averting doctors with his strong movements and making his dad and me laugh.
Near the end of my pregnancy, about 33 weeks, I discovered that Hugo was breech. Then began my anxious search for solutions, since there was only one doctor I knew of in Atlanta who would deliver a breech baby through the pelvis, and I wanted to avoid surgery if I could. I tried everything to turn Hugo, including Spinning Babies™ exercises, acupuncture, chiropractic care, massage, baths, singing to him, and even an ECV (external cephalic version) at the hospital, but nothing worked. In fact, he turned head down during the ECV but turned right back! He knew where he wanted to be! So I decided to transfer to the one OB who would give us the ability to try for a pelvic delivery.
The day before Hugo died, my partner and I were at the doctor’s office, talking about our plans for our baby’s birth and getting excited that we finally knew where we would be on the day. Though it wasn’t what we had hoped for, we were just excited to be done wondering if we would still be able to be at the birth center or at a hospital. I felt like I could breathe easy for the first time in weeks, as I had been so worried that something was wrong with my baby–this feeling I couldn’t shake. At that appointment, Hugo’s heart rate was strong, as always, and I was visibly healthy as well. I prepared myself for a possible breech birth by frequenting the Breech Without Borders website and watching videos of pelvic breech births.
The Worst Day of My Life
But the night after having that last appointment, I remember Hugo had moved frantically before bed, which I thought was him just being active like he always was, then I remember waking up to go to the restroom and not feeling Hugo move at all as I tried to fall back to sleep. Normally, he would keep me up for at least half an hour, and I cherished that time when I knew he was safe. I woke up the next morning with a feeling of utter dread, knowing that I had not felt him move. I tried to eat and move around, hoping I had just been too tired to wait for his movements overnight. I felt nothing. I called my doctor’s office, and the nurses told me to drink a surgery drink. After doing so, I thought I felt Hugo move, which I have since learned may have been contractions after Hugo had passed. Because I felt something, I thought he was okay. I wanted so desperately for him to be okay. After waiting for more movement, I didn’t feel anything again and called my doctor’s office. They told me to wait another two hours and let them know if I didn’t feel ten kicks in that time. When I didn’t (after going to a horrific nail appointment to try and distract myself, where I spent the entire time knowing something was absolutely terribly wrong), I came home in tears, and my partner and I drove to the doctor’s office.
There, we found out our baby’s heart had stopped beating. And my whole world seemed to end. I couldn’t believe it. I had said in the car on the way there, “If anything happens to this baby, I will not survive it.” Yet, somehow, less than an hour later, there I was surviving, on my way to the hospital to get induced and give birth to my baby, who would never come home with us.
Measure the Placenta
What especially breaks my heart now looking back at our story is, because Hugo was breech, we had at least three third trimester ultrasounds, and not once did anyone look at the volume of his placenta. (Those ultrasounds wouldn’t have even happened at all if he hadn’t been breech.) His life was in danger, but the danger was hiding in plain sight, simply because the ultrasound techs and providers did not know about EPV (estimated placental volume). I also didn’t know to check for quality of movement and not just quantity. When I look back, I remember that his movements did slow down. He kept kicking me with what I imagine was his left foot, right near my ribs because of his position. If I had known what to look for, maybe I would have been able to save his life. I thought I had felt movement, and that was enough. I never wanted to be a bother to my providers and thought I had been overly anxious. I didn’t want to seem like too much, or just a freaked out first-time parent. Now I know that movement should never slow down in the third trimester, and I should feel comfortable to ALWAYS go in to check on my baby, without waiting at home first or feeling silly.
My intuition was right
Before and after Hugo’s birth, we were told that he probably died from a “freak chord accident,” which would likely not recur. But the autopsy report had revealed nothing out of the ordinary. For a few months, I accepted that. But I was terrified that this would happen to us again if we were to have more children. After speaking with a fellow loss mom and friend, I took a look at PUSH for Empowered Pregnancy on Instagram and found a Clubhouse episode featuring Dr. Harvey Kliman, placental researcher at Yale Medicine. I learned that there are preventable causes of stillbirth that many people never find out about, even if it happened to them. After a long journey of trying to get Hugo’s placental slides to Dr. Kliman, we learned that Hugo had died from a small placenta, which occurred because of a genetic issue (that could recur!). He was nine times bigger than his placenta at birth, when he should have only been six times bigger. He was in the 30th percentile for his weight, but his placenta was in the less than 1st percentile for its volume. No one ever knew. There were no obvious warning signs.
He should be here with us now
I don’t blame any of our care providers for Hugo’s death, because I know they did the best they could with the knowledge they had. But I do blame the system for not taking action sooner to make Estimated Placental Volume measurements standard care for all pregnant people. This should not happen. Period.
Now, I parent Hugo by advocating. His legacy will hopefully help save other babies and parents from the heartbreak of not spending their lives together. He will always be my beautiful, headstrong, firstborn baby. And because of the information we’ve gained from Dr. Kliman and Measure the Placenta, we will be able to save any future babies from what Hugo experienced. I am grateful for that, though it breaks my heart, too.
Thank you for reading our story. Sending you love, wherever you are. Let’s measure placentas, in honor of Hugo and of all the babies who should be here with us now.
Aaliyah’s Story by Liz O'Donnell
Aaliyah Denise’s story begins June 2, 2020, when I took a pregnancy test and it came up positive. My entire pregnancy was absolutely blissful, minus the heartburn!! No morning sickness, great doctor appointments (despite the COVID atmosphere) and each day I was a little bit more excited.
From the get-go we were told Aaliyah was on the bigger side—at our 20 week scan we were told it was because she was on the taller side, which makes sense as her parents are both tall people! Looking ahead I was planning for a volleyball or basketball superstar…or of course, a world renowned model. I thought my biggest fear was delivering a large baby…wow, I couldn’t have been more wrong.
I spent the Saturday after Thanksgiving decorating the house for Christmas—I was 31 weeks pregnant. I noticed that I had not felt Aaliyah move while I was decorating. I thought it was because I had been boppin’ around so much, I just didn’t feel her. After doing all of the “little things” to try to get her to move I decided to text my doula for some advice. I was SURE I was just a nervous first time mom, freaking out about absolutely nothing.
My doula encouraged me to go to the hospital and they’d do a quick check. She assured me I’d be no bother at all. When I called the hospital they said no problem come right in, this was about 10:30pm. I walked right past the ready to go hospital bag in the hallway…right past her completely set up nursery…turned to my dog and said, “I’ll be right back- this will be quick!”
When I arrived at the hospital the nurse tried to find a heartbeat and so sweetly said she didn’t think the machine was working and she’d be right back. I could tell she looked nervous but I didn’t question much. EVERYTHING had been so perfect and so normal. Now I look back and think too perfect and too normal.
One of the midwives came in, also searched for a heartbeat and found nothing. Hearing the word’s “fetal demise” was almost comical to me in that moment…fetal demise? Are you kidding me? Everything has been so great with my pregnancy: Aaliyah met all milestones, I was perfectly healthy and in that moment I felt absolutely fine. I had spent the entire day decorating the house for Christmas, blasting Mariah Carey’s Christmas album. What do you mean, fetal demise…and why does that term sound so awful? We need to stop using it in those first moments of finding out your baby’s dead and your life has just completely fallen apart.
I remember just staring straight ahead, no tears and saying “oh, okay, I need to call her father.” I didn’t even tell him I was going to the hospital because he had work at 4:30am the next day. Again, I thought, surely, I was only going to be at this hospital for 30 minutes tops. I stayed relatively calm (probably frightening the hospital staff now that I think about it) until Aaliyah’s father arrived—who was just as confused as I was—when the midwife explained what would be happening next, etc., etc. Then, I lost it. I wanted to go unmedicated as long as possible, staying true to my original birth plan, but there came a time when I just couldn’t do it anymore, my stress levels were (obviously) so high I needed some intervention. I delivered Aaliyah Denise Briscoe around 5:30am on December 1, 2020.
While my hospital was great during the whole ordeal, ultimately they couldn’t find a reason for her death. We did not have an autopsy conducted. They said she looked absolutely fine there were no glaring issues. They said the likelihood of finding anything via autopsy was very slim. It wasn’t something either of us as parents had wanted done anyway. I met with the MFM a couple of weeks later who also said there were no signs of anything being wrong, except that my placenta was on the smaller side, but he assured me that because Aaliyah was growing appropriately it wasn’t much of a big deal.
Fast forward to my story going viral and connecting with the ladies of PUSH for Empowered Pregnancy. When I told them my story, and casually mentioned small placenta, they instantly said “You need to talk to Dr. Harvey [Kliman], NOW.” I did just that. I had all of my information sent to Dr. Harvey, who makes the process incredibly easy for such a difficult task, and now finally have a solid answer for what happened to our daughter. Her placenta was small, which certainly played a role in her death, and ultimately we lost Aaliyah due to maternal fetal hemorrhaging. If I had known that not everything was as “perfect” as it was made out to be, if EPV measurement had been part of standard care, a plan could have been made to keep Aaliyah as safe as possible. With that, if I had been more educated on movement, particularly too much, I firmly believe our daughter would be here—after a journey in NICU sure—but still here…alive.
EPV needs to be a part of our standard care. It takes literally no time at all to measure the placenta. It boggles my mind as to why we are not doing this. It will save babies lives. It will prevent mothers and fathers from needing to carry the pain of having a dead child every day, for the rest of our lives, until we too pass away. It all seems so simple and yet, as I’m learning more each day, the push back on EPV is real. This is why I am willing to share Aaliyah’s story. The likelihood of Aaliyah being a preventable stillbirth is very high and no family should ever have this on their mind every single day.
Rhoan’s Story by Erica
My son, Rhoan, was born still at 39 weeks on March 5, 2020 after a “perfect” and “low risk” pregnancy. He was my first pregnancy and first child.
My last OB appointment with him was two days before he was born (when I was 38 + 5), and everything was seemingly perfect (based on a simple doppler check and belly measure). I was not tracking fetal movements (I was not made aware I should), but the next day I noticed he had slowed down and wasn’t moving as much. I did not go into the hospital because I thought he was “getting ready for labor.” I had bought into the lie that babies run out of room in the 3rd trimester and do not move as much. I have since learned how inaccurate and deadly this information is!
When March 5th rolled around (I was 39 weeks), I finally went into the hospital to check and that’s when our worlds ended. We were told the famous last words before we were inducted into the worst club on Earth, “There is no heartbeat.”
I got induced and he was born 9 hours later weighing in at 7 lb 6 oz and 21” long. He was perfect, except he had no life in him. His placenta, umbilical cord, and amniotic fluid all looked normal to my OB. With no obvious cause of death, the doctors were very quick to chalk up his death to “these things happen, but they probably won’t happen again.” We did not get an autopsy for a couple of reasons, and always wondered if we missed something.
I found out about Dr. Kliman from another loss mom on Instagram. I contacted his office, and within a week we had a report of his findings. After 8+ long months of having no answers, we finally had our son’s cause of death! I was in shock when I learned that a small placenta likely contributed to Rhoan’s passing. We never thought we would get answers as to why Rhoan died, so it was initially hard to wrap our minds around.
I am very angry that measuring EPV is not standard protocol in OB care because it is a simple measurement that can easily identify a small placenta which is a risk factor for stillbirth. I feel more empowered now that I have a medical reason for my son’s death, and something tangible my care team can look out for to prevent happening again.
Charlotte’s Story by Anna Feldberg
November 7, 2019 was the worst day of my life. It was the day I found out that my daughter Charlotte – my first child who had been conceived after a year of trying - had died; that I had suffered a stillbirth at 35 weeks pregnant. Charlotte was born naturally the next day, lifeless – and a huge part of me died along with her.
Up until that point, my pregnancy had been completely fine – no complications, no red flags, no detected concerns to speak of. But around 7:00 PM on November 7, 2019, I felt off; I felt like Charlotte’s movements had slowed down. Actually – I couldn’t remember a particular strong kick since 3:30 PM.
A few hours later, my husband and I went to the hospital. Our OBGYN had told us on the phone when we called her after hours with our concern: “You can go to the hospital for peace of mind because obviously I cannot do an ultrasound over the phone. 99% chance everything is fine.” It goes without saying that odds mean absolutely nothing to us anymore.
After doing some research and having Charlotte’s placenta reviewed by Dr. Harvey Kliman, Dr. Kliman was able to tell us what no other medical provider had been able to: that Charlotte’s placenta was extremely small – it was in the 1st percentile for size based on her 35-week gestation, and that this is what likely caused her death. A tiny placenta cannot sustain the growth of a growing fetus past a certain gestation, no matter how hard it tries. However, the placenta pathology unfortunately did not provide much insight as to what caused the small size of the placenta. It is believed it must have been a random genetic anomaly.
After meeting Dr. Kliman and learning more about the importance of the size of the placenta throughout pregnancy, I insisted that my next pregnancy be monitored much more carefully, and that my placenta be measured at each appointment. The measurement takes 30 seconds and has no downside. It should undoubtedly be part of standard maternal/fetal care. Knowing that a patient’s placenta is not an appropriate size can help a medical provider make better decisions about future monitoring and the timing of their patient’s delivery. It is one tool in the toolbox – and it could have possibly saved my daughter’s life.
I miss Charlotte every single day. Not a day goes by when I don’t long for her to be here with her younger sister, Winnie Shea, whose middle name is an homage to her big sister.
Greyson’s Story, by Kelly Sargent
I am Greyson’s mom. During my pregnancy with Greyson, signs that something was not quite right were present. My Fundal height was behind. My weight gain was not on track. Because these were subtle, they were brushed aside. On his growth chart he was right in the middle a "Goldilocks baby." Every nonstress test was normal. On March 11, 2019, his heart beat was strong and steady, then March 13th he was gone.
I knew something was not right when I noticed decreased fetal movement. I rushed to my OB where they confirmed via ultrasound there was no heartbeat. I then headed to the hospital to start the induction process. After I delivered my angel on March 15, 2019, the delivering doctor mentioned that the placenta was very small in size. I brought this to my OB at my follow up visit, but was told that the pathology report showed it was normal size. “These things just happen.”
This was my son that had DIED. A little human who deserved to be alive. Too many women suffer loss! “These things just happen” needs to stop! Especially when you know of a loss mom so close to you that it is your own mother. I knew I needed to advocate for myself and Greyson.
I came across Dr. Harvey Kliman’s podcast done by Star Legacy Foundation from a link shared on another moms page. Dr. Kliman was able to give me answers on Greyson’s death. He helps families of loss find answers. Greyson passed away because his placenta was very small, weighing less than 0.1% for his gestational age. My pregnancy with Greyson had a fetal to placental ratio of 8.3:1 (normal is 6:1). It could not sustain him as he continued to grow inside my womb. During my meeting with Dr. Kliman I mentioned my mother’s losses and that I was born at 30 weeks via emergency C-section. I was the smallest surviving neonate born at Yale in 1987. Dr. Kliman and offered to compare all of the placentas for similarities. My brother’s placenta was extremely small, weighing less than the 0.0001%ile. My placenta was also very small, weighing less than the 0.1%ile. All of the placentas also presented trophoblast invaginations and inclusions were also noted, supporting the conclusion that this small placenta was secondary in part to a genetic issue.
I have had all prenatal genetic testing done that was offered to me. All the results have come back normal. I believe if the doctor did not intervene during my mother’s pregnancy with me by delivering me early I would not be earth side today.
EPV is very important to me. And you can see from my family history how important EPV is. It needs to be implemented into standard care. My hope is that I can help break the stigma. Bring awareness. Greyson, mommy loves you!
Junie's mama's Amanda, @orangeafmama's instagram page
Joyfully pregnant with our first child, we learned at our 20 week scan that our baby was measuring small. Because of this, we were referred to a local MFM (maternal fetal medicine - high risk specialty clinic) doctor for closer monitoring. As my baby’s growth percentiles continued to fall on the growth charts, we were given a diagnosis of IUGR (intrauterine growth restriction), caused by placental insufficiency. We asked our provider “can you measure the placenta?” And we were told a resounding “no.” This confused us greatly as it seems that they measure EVERYTHING on an ultrasound, but not the organ grown specifically by the body to sustain a new life, especially when it seemed to be causing my baby’s growth restriction.
We began going for weekly checks and then twice weekly, as baby’s growth continued to fall on the charts. We continued to ask about measuring the placenta and we were consistently told “No.” This of course frustrated us and again, it seemed like a no-brainer to take a simple measurement. Throughout all of this, we were assured time and time again that we were being watched closely and that they would catch any problems before they happened. I used to think that if you were going to a high risk clinic, you knew the likelihood of something going wrong was high, but honestly it felt like the opposite. It felt like there was no way anything could go wrong, since we were being watched so closely. Even with our baby’s severely growth-restricted state, the possibility of stillbirth was only mentioned to us *one* time in the course of our pregnancy care, and that was only brought up when they suggested delivery at 37 weeks. So we continued on, having twice a week biophysical profiles and non stress tests, with an induction date set at 37 weeks.
Just four days before our scheduled induction, at our last growth ultrasound, we were told the four words no pregnant woman should ever have to hear: “There is no heartbeat.” Our lives were instantly consumed by grief, guilt, regret, rage, anger, and questions. How could this happen? How could our baby die, when being watched so closely? How did they not “catch” this, as they had led us to believe, and prevent our baby’s death?
After 6 hours of labor we got to hold the most pretty little girl in our arms. We named her Juniper. In the happiest wing of the hospital where life is usually being welcomed, we were the saddest room, left to call a funeral home rather than excited friends and family. I physically ached holding her, afraid to fall in love with her (which was impossible), knowing that she wouldn’t get to come home with us. Looking at her perfect face, taking in all her features, I didn’t understand why she had died. Our tear stained faces asked for any available genetic testing, a placenta review, and an autopsy to be done so that we could find out why our little girl had died. All of these reports came back as “normal” other than Juniper being small.
Fast forward many months, I was doing what I could to turn my pain into something productive: I was speaking on a parent panel to educate nurses on how best to care for families whose sons and daughters died and then were born. Through these parent panels I was connected to another loss mom, whose son died at full term just a month before Juniper. Her son was perfectly on track for size & weight...but his placenta was not. Like us, all reports came back as “normal” but she pushed for more answers. Her pursuit helped her discover that her son’s placenta was far too small to sustain him, and that if an EPV (Estimated Placental Volume) measurement had been done, his small placenta could’ve been flagged as an issue and a better-timed delivery would mean he could be here, alive and well. This conversation was like a light bulb going off, and I was instantly taken back to that MFM appointment where we were told that our baby’s growth restriction was caused by placental insufficiency, but that “no we don’t measure placentas.”
This loss mom encouraged me to send Juniper’s records off to a Yale researcher to get more information on my baby’s placenta size and possibly her cause of death. Dr Kliman’s report showed that Juniper’s placenta weight was less than the 0.1 percentile.
Seeing this report and that small, small size of Juniper’s placenta hit me like a ton of bricks. I feel like I was lied to, that if my placenta had been measured then a more informed plan of delivery could’ve happened, and I could have held my living, breathing baby in my arms.
I believe my daughter could and should be here.
Elijah’s Story, by Ann O’Neill, Director of Measure the Placenta
Listen to Ann’s story on the Shattered Conception Podcast
Watch Ann tell her story on YouTube
Read more of Ann’s story on the Healthy Newborn Network website: Breaking the Silence: A Quest for Answers
After three living children and an uneventful, healthy 39 weeks of pregnancy with our fourth child, I was only moderately concerned when I did not feel him move the day before his due date. I just had to wait for labor to start and I’d be holding a crying baby soon, right? I went in to the hospital concerned about his reduced movement, and was shocked and devastated to learn that our son, Elijah David O’Neill, no longer had a heartbeat. I was induced the next morning and Elijah was born that evening on his due date, July 2nd, 2018.
It felt like a nightmare had descended on my world and I had no idea how to survive this. I woke the following morning after his birth and was initially convinced this was all a terrible dream. But it was not. On this tearful, lonely road we were loved well by the midwives and nursing staff at the hospital, fellow stillbirth families who reached out to us and knew exactly how to love us, our church, and many friends and family. We held Elijah for the last time on Tuesday, July 3rd, said goodbye to Elijah’s body a few days later at the funeral home, and held a memorial service for Elijah in August.
In spite of being told that half of families never find out why their baby was stillborn, we asked for an autopsy, placenta review, genetic testing, and any testing they could do to determine why Elijah died. I was scared what the answer might be as the cause of his death, scared that all fingers would point back at me. But I was even more scared of living with regret that we didn’t try to figure out what happened to him. After all tests came back, we were told by the pathologist at the autopsy meeting that Elijah’s cause of death was unknown.
We were also told that there might have been a mix up with Elijah’s placenta. Elijah was a large baby (8 lbs 13 oz, or 3,997g) but the placenta labeled for him was very small, only 397g. The pathologist found this discrepancy odd, so he wondered if perhaps Elijah’s placenta had been mixed up with another baby’s placenta. He told me that if it was the right placenta, it was less than 10th percentile for Elijah’s gestational age. I wanted to know more and asked, “How much less than 10th percentile?” and “Could that be related to why he died?” The pathologist dismissed these questions as unimportant, and said he could not help me find the answers. And he was not interested in figuring out if this was actually Elijah’s placenta.
I had a million questions, and no one motivated enough to help me find answers.
A week later, I took a walk and listened to a podcast produced by Star Legacy Foundation titled “The Placenta and What it Tells Us.” In this podcast, Dr. Harvey Kliman described the link between small placentas and stillbirth, and the importance of the Fetal:Placental ratio. I raced home, pulled out Elijah’s autopsy report, and found that he had at a 10:1 weight ratio between his body and his placenta (6:1 is normal at term). On the podcast, Dr. Kliman stated a 10:1 ratio is so high that a stillbirth is likely imminent. At that ratio, a fetus cannot get enough oxygen from the placenta to be able to survive.
I was stunned that I had just learned on a podcast why my baby had died. After sending health records, placenta slides (routinely saved in pathology departments for years), ultrasound images, and blood types to Dr. Kliman, he confirmed there had been no placenta mix up, and that it was a very small placenta that caused Elijah’s stillbirth. To add to my shock, I learned that ten years prior to Elijah’s death, Dr. Kliman had invented an easy and free way to measure the volume of a placenta in utero, precisely to prevent small placenta stillbirths like Elijah’s. Estimated Placental Volume (EPV), had it been done at one of my late ultrasounds, could have saved my baby’s life by raising a red flag, leading to an induction in week 38 or 39 of pregnancy.
Since then, we have connected with far too many families with similar stories. Our families learned, in the most horrible way, that small placentas are both a risk factor for and a cause of stillbirth. We have learned that EPV measurement is an effective, simple and available tool to flag babies at risk of a stillbirth due to a small placenta, to help patients and doctors decide when the best time is for a baby to be born. In spite of this, placenta sizes are routinely ignored in prenatal care, as well as in stillbirth autopsies and placenta reviews. This gap in prenatal care is unacceptable.
There are an estimated 4,200 families this year in the U.S. who will experience a stillbirth due to a small placenta, many at or near full term when a fetus is most likely to outgrow the placenta. I share our story of Elijah’s death to encourage pregnant mothers to ask for EPV measurements at each ultrasound, and to implore the medical community to make an effort to detect and prevent small placenta stillbirths. Measure, identify, prevent. We love you Elijah, and we miss you every day. I’m so sorry I did not know what I now know, in time to save your life.
Naomi’s Story, by Laura Forer
In 2015, my husband and I had a healthy son delivered at 41 weeks. A few years later we tried for another baby and became pregnant with Naomi, who was due May 7, 2018. We were thrilled to complete our family, and what made the pregnancy even more special is that our best friends were due only one week later. The joy and hope we all had during those nine months was something we all knew was rare, and we were grateful.
Our pregnancy had a couple scares that were quickly put to rest. One was a misreading by the ultrasound technician. The second was more serious with a two-vessel umbilical cord. A two-vessel cord, also called a "single umbilical artery," can cause restricted growth and/or conditions with the heart or other organs. So we were monitored extra well (or so I thought). We had a fetal echocardiogram. Naomi's growth was watched carefully. Eventually we made it to around 34 weeks and all was looking great -- she was growing well and her organs were fine, so now we just had to wait out the last month or two.
At 38 weeks, I woke up to an elbow or limb jutting from my stomach. My husband and I laughed at what a crazy baby we had. I went about my day but didn't feel any movement. Finally, at 11pm that night, he convinced me to call the doctor.
We went in and heard those dreaded words, and our world changed forever. I delivered a beautiful baby girl the following day, held her for just a moment, and gave her away forever.
After she was delivered, the doctor told us the cause of death was now obvious: a tight knot in her umbilical cord.
Additionally, the hospital's pathology report of the placenta showed that it was in the under-10-percentile range but commented on nothing else remarkable. It was only after hearing about Dr. Kliman through Star Legacy Foundation that I decided to send our pathology to him. That's when we learned that her placenta was actually in the <0.01 percentile and that it had trophoblast invaginations -- which he sees in a large percentage of placentas from fetal demises. The fetal:placental ratio was 8.9:1 (baby was 2835g; placenta was 319g). The average is 6:1. My understanding is that survival is nearly impossible at 10:1.
I was alarmed that Naomi had three strikes against her -- the single umbilical artery, the cord knot, and the tiny placenta -- yet only the single umbilical artery was seen prior to her being born, especially with the extensive monitoring we had due to the single umbilical artery. At this point, we still think it was the knot that killed her, but the placental pathology shows she may have died even without that knot.
We have since had another daughter who is healthy and alive, and her placental pathology report came with no abnormalities. Additionally, my MFM used Dr. Kliman's method to measure the placenta throughout the pregnancy.
Luke’s Story, by Angela Moxley
My story begins on August 20, 2015, when I was admitted to the hospital at 37 weeks pregnant to deliver my second child. My healthy 2-year-old was waiting at home. She had been born almost exactly at 40 weeks following a totally normal pregnancy.
By all outward appearances, my son’s pregnancy had been normal as well. No concerns were raised at any of my regular appointments or ultrasounds. But I’d gone to my doctor’s office earlier that morning because he hadn’t been moving as much the previous few days, and by that morning, he had stopped moving all together.
My nightmare began when my doctor looked at the ultrasound and said she couldn’t find a heartbeat. Unable to process this statement, I asked her what she meant. She ever so gently replied, while still staring at the screen, “I’m afraid it means the baby has died.”
At the hospital later that evening, I was induced, and early the next morning, on August 21, Luke Wyatt Moxley was born. He had all his fingers and all his toes, a normally formed brain and organs, and was appropriately proportioned and totally perfect in every way, except that he was completely silent, lifeless, his eyes clamped shut – we will never know what color they were. We held him for a while, and then we said goodbye, for the first and last time.
Some weeks later, we received the autopsy report, which confirmed that he was anatomically normal, with no outward signs of any genetic defects. The problem appeared to originate from his placenta, which was encased in clotting material due to an abnormal immunological reaction.
After finding confusing and conflicting information on recurrence and treatment of this condition in subsequent pregnancies, I consulted with the staff at Star Legacy Foundation. They referred me to Dr. Harvey Kliman, who reviewed Luke’s file and delivered a shocking conclusion: While Luke’s weight, at 2,430 grams, was in the 10th percentile for gestational age, his placenta, at 312 grams, weighed less than the 0.01 percentile. As Dr. Kliman informed us in his report, “This placenta was EXTREMELY small.”
To this day, it confounds and angers me that such a glaring red flag was completely missed due to the failure of our health care system to routinely monitor placentas. Luke’s condition was present throughout his entire pregnancy, so it’s likely that had his placenta been measured along the way, the problem would have been flagged, and there’s a good chance he might be here with us today. We have a very simple tool that has the potential to prevent so much heartbreak, and yet doctors are reluctant to use it. Why?
Luke’s death nearly destroyed me. Today, while I have largely managed to reenter society, I carry in my heart a stone of grief that can shatter at unexpected moments. Part of the healing process has been advocating for the day when no one has to hear the words, “I’m afraid it means the baby has died.” Widespread adoption of EPV could bring us ever closer to that day. It is too late for Luke, but not for all the babies with small placentas who are yet to be born.
Neville’s Story, by Alicia
My husband and I were expecting our first child in 2013. I had some rough morning sickness, but other than that my pregnancy was unremarkable until, at my 32-week OB visit, my doctor noted my Fundal height was below normal. I commented that my family was small and we had a history of small babies, so we decided not to put me through extra testing. Into week 35 I noticed a change and decrease in baby's movement and chalked it up to the myth that baby was running out of room. I had a gut feeling something was wrong, and at my 36 week checkup my dread was confirmed. My baby had no heartbeat.
My beautiful and perfect son Neville was quietly born sleeping May 25, 2013. We weren’t given a cause of death—there was nothing obviously evident at birth, but the doctor had a slight suspicion of a placenta problem. We had an autopsy performed, but my OB merely told us there was no cause. She didn’t wish to discuss it with us and we had to plead to get a copy of the results and were left to decipher it on our own. We had no idea what “fetal thrombotic vasulopathy and extensive lesions can lead to sudden intrauterine fetal death” meant. The placental weight was categorized as less than the 5th percentile, but that was not specifically remarked upon.
I needed more answers before trying to get pregnant again. We heard about Dr. Kliman through Star Legacy Foundation and sent him my placenta slides. His report stated, “This placenta was EXTREMELY small, weighing less than the 0.0001 %ile for gestational age. This small placenta was very stressful for the fetus for a prolonged time. It is remarkable that the fetus reached the 10th percentile for weight for gestational age.” Neville’s weight was 2260g and the placenta 182g. Only now do I know how obscenely small the placenta was! How did this go undetected?! With the simple EPV measurement this small placenta could have been detected early and perhaps my child’s death could have been prevented.
While pregnant with my rainbow baby I shared Dr. Kliman’s report with my OBs, and the recommendation to use EVP, which they looked into but never did. Thankfully, I did have close and extra monitoring and delivered a healthy baby boy at 36 weeks.
Knowing what I know now about how easily the placenta can be measured, problems detected, and losses possibly prevented, I am left frustrated with prenatal care today, yet very hopeful for the future. Please share our message that placenta volume measurements become routine!