It got me to reflect on my experience. In Uganda,where I come from, reside and gave birth to Mwezi from, what culture dictates concerning stillbirth is that associating any contact (emotional or physical ) to that baby and its loss is a taboo. Stillbirths are largely interpreted as a bad omen for marriage and usually result into forced annulments for such relationships. For others ,stillbirths are believed to be a result of witchcraft and curses so any emotional or physical contact results into repeated occurrences of the same or worse things for the bereaved families.
Therefore, many people never share these experiences at all except in confidence as a way to coach the bereaved parents on these beliefs and ensure that they too detach and reject any further connection or attachment to their stillborn baby and the entire experience.
As a result, families are forced to grieve in shame and silence, to numb their feelings and pretend they are not affected as well as end their marriages on account of the stillbirth. There are many stories of post traumatic stress disorders that they suffer sooner or later on in their lives among other terrible outcomes.
However, because of the awareness that has been happening lately, I was fortunate to have been offered the opportunity to hold my baby and bid them a proper farewell at the hospital. That I got to take some pictures with him and enjoy a few minutes of cuddling and seeing his features was what such work in this field got me.
Being that it is all I’ll ever get with Mwezi I treasure those minutes and am glad I was given a chance to spend them like that instead of wondering what my child looked like, what was wrong with me, who bewitched me etc.
It has now been 3 years since my stillbirth experience and I can confidently say that this period has had the greatest impact on my life and my surroundings so far. I have found purpose in my loss through offering peer to peer counseling and support to stillbirth bereaved families. With the help of ISA and Birth With Dignity, I have been exposed to knowledge and platforms on which I advocate for proper bereavement care, overcoming the cultural stigma around stillbirths and safer-baby care awareness which I also occasionally do in hospitals in my area of residence.
I had the most beautiful pregnancy with her, with no complications or issues. She enjoyed Indian food and listening to her dad reading books and stroking my belly, always responding with a kick or an elbow.
I went into labour at 41 weeks and I felt her last kick on the way to the hospital. We arrived and we were told there was no heartbeat. Our precious little girl had died.
Our world came crushing on us, and consequently to our families who were excited to meet the newest member. She is the first grandchild on both sides, and she stole everyone’s heart from the moment we announced I was expecting.
I want to remember her positively, and I include her in everything we do.
Leaving the hospital with a memory box instead of your baby is devastating. I will never forget the sense of void and hopelessness I had by seeing my husband walking in front of me without our precious daughter.. I always imagined him walking out with her in the baby seat.
My heart is with everyone who experienced this devastating and heartbreaking loss. I hear you and I’m walking this path alongside you
Lamentablemente no tuvimos una guía adecuada que nos dijera que era lo mejor para nosotros, por eso decidimos renunciar al cuerpo de mi bebé sin conocerlo, esperábamos vida y no teníamos conciencia de que los bebes morían. Al renunciar a su cuerpo no tuvimos derecho a nada pero yo en la UCI vi sus huellitas en un podograma (eso quedo en mi mente para siempre). En medio de mi dolor investigue y me di cuenta que no había tenido la atención adecuada por lo que luego de elaborar mi duelo decidí formarme como consultor en duelo gestacional y neonatal y hoy educo al personal de salud de mi país en este tema. Forme una asociación llamada “La maleta de Arturo” en honor a mi bebé y a través de ella asistimos a los hospitales públicos a brindar educación a los médicos en formación obstétrica, neonatal y enfermería.
Hoy La maleta de Arturo es miembro de ISA y estamos felices de poder aportar nuestros conocimientos y experiencias a esta alianza.
Vivir sin recuerdos es una tortura, nuestro taller de sensibilización lo dimos en la clínica donde Arturo nació y solicitamos el podograma, hoy tengo el podograma de mi bebé, se cuanto peso, midió y tallo. La paz llego a mi corazón con este recuerdo. Los recuerdos de nuestros bebes sanan el corazon!
The morning of the day she passed I had a scheduled sonogram – Annabel was unusually active, but the sonographer didn’t seem concerned. I was told she was “practicing breathing” and that this was a sign she was very healthy. I wonder now whether she was struggling and if I had been more persistent the outcome might have been different. The sonographer’s words to “remember, everything happens for a reason” seemed odd even in the moment and continue to haunt me. Did she know?
Later that day, Annabel’s movement quieted. That evening, I became really concerned, but rationalized that I had just been to the doctor that morning. I went to bed instead of making the hour drive to the hospital.
The next morning, I drove myself to the doctor, even telling the nurse that I was probably being overly cautious and would feel her kick on my drive. But when I arrived, the doctor silently shook her head when she looked for the heartbeat that was so strong the morning before.
Annabel was beautiful – she looked just like her big brother, who was 2 at the time and thankfully too young to know what was happening. I stayed with her 2 nights in the hospital, studying her sweet face and begging my brain not to forget anything.
While I continue to look for answers for my personal healing, I also want Annabel’s story to have broader meaning and help other families. Prior to my loss I was so uneducated about stillbirth— it’s a taboo topic that is shockingly, infuriatingly under-researched. Equally surprising is the lack of attention I received after her loss – the doctors dismissed me saying stillbirth is just something that happens and we often don’t have answers. There was no follow-up to check on my mental or physical wellbeing and I was left to advocate for myself while grieving my daughter.
I am grateful to find this ISA community and hope that we can collectively make a difference in honor of our beautiful children.
I received the Covid-19 Pfizer shot, and between my 1st and 2nd shot, we conceived. Right after my 2nd shot, but before I knew I was pregnant, I had the bad reaction that so many did (fever, chills, nausea the whole day after getting the 2nd shot). However, 2 days after the shot, I started to have pain “down there” and I noticed red spots. I thought, “did I cut myself up while shaving?” But I think I would’ve remembered that pain. The next day, when I got home from work, the pain from walking around was unbearable. I grabbed a handheld mirror to see what’s going on and all the bumps had now turned white/yellow. And it hurt like crazy to urinate. It hurt to sit. I called my on-call OB and he said to call the office in the morning and they’ll try to squeeze me in. His nurse was there and as she looked at me, she had no idea what exactly it was or what was causing it. They scraped (OUCH) a sample and sent it off to the lab to test. It was quickly spreading from 1 side of my labia to the next. The next couple days I started researching, and I came across multiple case studies of women going through a similar experience right after being diagnosed with Covid or right after receiving their Covid shot. It was called “Acute lipschutz ulcers” or “Vulvar Aphthous ulcers.” I was prescribed antiviral medicine and given a lidocaine cream. Both helped within a few days. But it took a good 7 days for the ulcers to disappear. It took even longer for the pot holes they had left to disappear.
A week after my appointment, I noticed that my period was 5 days late. My period had been late before and I’d test negative and then have my period start a few times prior, so I didn’t think anything of it. I decided to test just to know what’s going on because we were supposed to call our clinic and schedule the IUI on my 1st cycle day. I took 3 positive tests that day. The next day my nurse called me to check up. I told her that the ulcers were improving, and she let me know that I tested negative for every possible thing they could test my sample for. She had read the case studies and was submitting my case to the health department, like I had asked her. I wanted other doctors to be aware so other women didn’t have to suffer like I did. And then I told her I took positive tests and asked her to order a blood test for me. 2 days later it was confirmed that I was pregnant, on my Birthday. It was such a sweet present to myself that after years of trying, our miracle was finally happening.
I didn’t have much nausea or morning sickness, which I’m very thankful for. Everything was smooth sailing September until Christmas. On Christmas day, I couldn’t hardly eat. I just felt really full. For the next 3 weeks, I couldn’t hardly eat anything. I would take 2 bites of food and have immediate intense heartburn, and then I would be up all night nauseous. I got an abdominal ultrasound scheduled to see if they could conclude that it was my gallbladder, which I’ve suspected I’d had problems with for years. Unfortunately, no stones or bile detected on the scan. And no further tests could be conducted while I was pregnant. “Just try to watch what you eat. And hope you don’t end up in the ER,” was what the tech told me. At least I got to confirm Liam’s sex at that appointment.
2 more weeks go by, and I am crying every night to my husband because I’m starving but cannot eat without immense pain. We had our doctor appointment scheduled for the next day where I told my doctor all of my concerns and what I’ve experienced. He was going to put in an order for a Home Health nurse service to come by and bring me Banana bag fluids with nutrients because I was so malnourished, 3 times a week. I lost 5 pounds within 2 weeks. He was also going to refer me to a general surgeon for a consultation about my gallbladder because I was convinced that it was the culprit and it needed to be removed before we hit the window of time where they try not to attempt any surgeries for fear of the baby’s safety.
2 nights later, I’m having severe, sharp, persistent upper abdominal pain across my whole abdomen. I waited 4 hours to see if the pain would die down, but it wasn’t and I developed a fever. I knew it was time to go to the ER. In the ER they did another abdomen scan and finally found stones, sludge, and confirmed I had an infection (fever was evidence of it). I was admitted to the hospital and had my gallbladder removed the following morning. They Doppler-ed Liam and his heart was great before and after surgery.
I was able to take time off of work to recover. My incisions were still hurting when I would walk or stand for a while, so I was able to extend my leave for 2 more weeks. At my post-op 2 week checkup, we Doppler-ed Liam again, and his heart was normal. 3 weeks after surgery, we had our 22 week anatomy scan scheduled. It was a late evening, 7pm appointment because of my husband’s schedule. 3 days prior, I had noticed that I hadn’t felt Liam moving. I was hoping it was something sporadic like you read on Google about the 2nd trimester movements. But, in my gut, I knew something was wrong. I just couldn’t think about it. As soon as the tech put the wand on my stomach and the picture came on the screen, I heard nothing and saw no movement. I thought she hadn’t pushed the button for us to hear the heartbeat yet. She immediately asked “how long ago was your last appointment?” and we let her know it had been about 10 days. And then she said, “Well there’s no heartbeat today.” And my world shattered. I laid there on that table and whaled and blamed myself for not coming in sooner. She was very sympathetic and told me there was nothing I did to make this happen. And there was nothing we could have done differently to stop it. We were told to go home and try to sleep, then come into the office first thing to discuss our options. That was the worst night of my life. I couldn’t sleep, haunted by the fact that my body was now the temporary tomb of my baby. To experience life and death within your own body, there are no words to describe how it feels.
The next day, we met with our doctor to discuss our options and he let us know that Liam was measuring at 19 weeks instead of 22. Our first thoughts were, “was he slowly dying for weeks and we didn’t know?” I went in for my induction and my heart was so heavy. I was in shock at what my life was and what my life was going to be from there on. I was fully aware that my dead child was inside of me and he needed to come out. But I was terrified of how labor was going to go. I hadn’t read up on it yet, I was waiting to do that until the time got closer. But I was too late. I didn’t have any postpartum padsicles or postpartum sprays yet, I was waiting to buy those until the time got closer, but I was too late. After 12 hours, I delivered Liam.
Our doctor was very quick to want to get to the bottom of why he died. Liam had died between 2-4 days prior, just like I suspected. He assured us that a loss this late is not common and is something that shouldn’t be happening. He found that Liam had a velamentous cord insertion (VCI). The cord either got twisted and cut off his oxygen and nutrient supply, or the cord got compressed because it didn’t have the thick Wharton’s jelly coating like it should have had. Looking at the statistics, only 1% of pregnancies have this complication and of those, 1% of VCI pregnancies end in miscarriage or stillbirth. We were the unlucky ones.
I’m not sure if any of my coincidental health problems played a role in my son’s demise, but I need to put my story out there so researchers and providers can look for indications or side effects of all that has happened to me. I hope my story can help at least 1 other pregnancy. I hope my story can save at least 1 life.
I want to enact change.
Every hospital in the the state of Arkansas, if not in our country, should have a mandated requirement for bereavement support specialist be a part of what’s considered full and adequate staff.
Also, individual staff with direct patient access be required to participate in classes up through completion of the minimum policy recommendations that includes the recommended support and Clinical counseling classes.
Authentic Empathy and compassion might not be able to be instilled into The staff in its entirety but it can be taught and implemented in the care of patients. It is an Attainable goal, one that should already be in place but sadly is not.
Our story is a hard read but it’s not that long. If you would, Please, I ask you to read it. Well for no better reason than because our baby deserves to be spoken for.
I’m Heather. I’m originally from Booneville Arkansas. I am the oldest of 7 and the only girl. I’ve seen my fair share of broken, beaten and long lost. However I’ve survived, overcome and have given voice to those that can not or are to afraid to speak for themselves. I may not know politics or rub elbows with the in crowd but I do know right from wrong, up from down and my head from a whole in the ground.
Our Jase Layne
I am deeply saddened to say that I delivered my son, Jase Layne, at 34 weeks; stillborn. September 25, 2021, was the saddest day of my, of our lives, or so I thought.
This is the hardest thing I’ve ever had to endure.
The hardest thing my husband has had to endure.
Postpartum depression doesn’t even begin to describe the state of mind I am in constantly. On top of it all, the hospital has lost our son’s remains.
They left us a voicemail to tell us.
Then, On Friday, October 8, 2021, 13 days after my son passed away, hospital personnel gave us ac h n unmarked box of cremains; in a container that was not sealed. There was no Id coin attached to the bag of less than 2ml of cremains, nor was the plastic transport urn accompanied by a Cremation certificate.
The hospital was steadfast in telling us they didn’t know who cremated our son. Since the exchange of the unidentified cremains, the hospital has even blocked my phone number from calling any of the numbers associated with their hospital, including my ob-gyn. There was an extensive effort that had gone into ensuring that I survived. I am, was in contact with my OB regularly to ensure my health remained stable after the unauthorized blood transfusions they gave me until then.
We were not made aware of any of the many options for after-death care of our son apart from the three given to us by the hospital staff.
Our family could have provided Jase Layne with so much more respect than the hospital has. There were so many options we could have explored had we known to avoid such uncivilized treatment and such torturous mental effects it has had on me and my husband, all at our son’s expense and at a time like this in our life.
I may never recover from this.
We may never recover from this.
We may never get to lay our son to rest in a way we need to for him and us.
I’m already a passe program member; I have Mental Health issues, this has broken me. Inside and out.
How do you wake up from a nightmare when you are not asleep?
No one will help us. No one has any idea what needs to be done. I followed all the recommendations and suggestions given to me.
I suffered immensely.
For hours I laid In a triage bed, writhing in pain, bleeding out internally. It was hours before they even gave me medication of any kind to attempt pain control. I would pass out and regain consciousness, feeling like I was burning from the inside out. I was forced to endure the pain of a medically induced labor and the Manual Excavation (removal Of blood clots) without an epidural, up until I refused to let the doctor touch me.
It was so…
I couldn’t take it any longer, I guess. It was like I had been tortured endlessly for what seemed like an eternity. So, that’s when they took me to an operating room and finally sedated me. They sedated me and finished the removal of my placenta, and pleased a balloon inside me to help. I was given more than nine units of blood via blood transfusions, including type b blood; I am A positive.
I currently cope with having to have endured so much pain by telling myself, “I took such unimaginable pain so that my son didn’t have to. “
But that is not true.
Our son had already passed away that morning before 10 am, and he was not delivered until 11:15 pm.
Jase was held, by his dad or me, for days without being put on ice or the mention of such being or needing to be done. We were not told of the stages his body would go through during this time. We were not informed of additional options for memorial services outside of the three choices we were given. There wasn’t someone to tell us in our prominent stage of shock that we could bathe our baby and dress him or to have him leave with us for a home funeral or many many additional options we have learned of after it is now too late to facilitate.
And to be, to be told he is lost or had been disposed of, or been treated with such disregard and us left not knowing what has happened to him if this is his remains…
This is just unheard of and unjust, to say the very, very, very least.
Please help us fight for our Jase Layne and future families to ensure this never happens again.
Heather and Stephen Shatzer
I share our story with you for several reasons. The traumatic effects of the first photo on the USB drive the nurse handed my husband. They were supposed to take pictures of our baby they had taken. They were. Even after holding onto his lifeless body every second I could in the hospital, I was unprepared for what I saw when we got home and ready to look at the photos. I wanted to see my baby boy’s face. I wanted to explore it and engrave it into my memory. That, sadly, isn’t what happened.
I can give you proof for or proof of lack there of, anything you may be unclear of pertaining to me and my son and that should give anyone just enough healthy curiosity to at least ask for something, before they leave me to my own accord, fighting this fight. Because this fight, it is the right thing to do.
I recently read two articles on grief that showed up as I scrolled news headlines. Very good reads, but they fall short because they don’t address the unique grief that comes with the loss of a child, particularly the loss of your unborn child who you never got to see alive on the outside of you.
It’s not just a loss that leaves a void filled with memories. With miscarriage and stillborn death, you have no memories of your child. You can’t remember what they looked like. We never even heard his heartbeat although I saw him moving on two separate ultrasounds. On the second one, I could see his little heart fluttering and he measured just one week earlier than he measured when he died. It was during week 17 that I thought maybe I was starting to feel flutters, but now I know he had already been gone for 3-4 weeks at that point. This was just two weeks ago, but for the rest of my life, I will know my womb was his tomb for a month and I had no idea.
This type of death even took away our right to know when it happened or why it happened. Death came silently – but in the night or in the day? We will never know. Where was I when it came? Was I watching our girls opening their Christmas presents? Was I laughing or was I complaining about something trivial? Was I worrying about what we would name him? Was I mad at my husband or yelling at the kids? Was I talking about him? Was I praying?
This type of death steals all your hopes for their future. It is a robbery of what might have been. A forced sort of reverse amnesia of a lifetime of memories that never had a chance. It’s like a bird swooping down to steal your only French fry from your hand or the wind snatching away your balloon, but then it’s nothing at all like either of those because your baby wasn’t a slice of fried potato or a crinkly balloon on a string. But you’re left staring at your empty hand or at the sky where the balloon you just held is getting smaller and smaller and smaller and you have to accept your helplessness. There’s no getting it back. The wind came and took it away.
It’s a constant wondering what they would have looked like or become. How would they have laughed? What color would their eyes have been? Your mind has nothing but a blank canvas and your imagination constantly feels inadequate for the task. Your only experience with them was knowing they existed inside of you and following their development on an app that compared their size to fruit. The app last told me my baby was the size of an orange. But, he was not a round, orange ball when I held his lifeless, precious body on that blanket. And all that is left on that blanket now is a stain shaped like a hash-brown from McDonald’s.
I see him in our daughters now and in my husband, too. I see him in the stroller that just passed me in the grocery store and in the cute baby video that popped up on my screen uninvited. I see him running naked through the house after his bath and then getting scooped up giggling as Daddy growls on his round little tummy. I see him mad at his sister for taking his cookie and I feel him asleep on my chest. I see him snuggled under blankets between his sisters on the couch and working in the garage with Daddy. I see him walking to his kindergarten classroom all by himself and then walking across the stage at his college graduation. I hear him saying, “Mom, relax….” and then hugging me so hard he picks me up off my feet because he’s taller than me now. And then, I close the book and remember these aren’t memories. They were dreams.