Tag Archives: tfmr

Stillbirth

Mari’s Story

I remember writing our life story a few months ago, and reading it now, I see the progress and the setbacks. I read about the hurt and the pain I went through and still do but with a different perspective. This is our story because it is my husband and I’s story, not just mine. 

Everything I had dreamed about and prepared for fell apart. December 21, 2022, was the day I died while still alive, if that makes sense. I am a 30-year-old female who lives in California. I am married to my high school sweetheart, and we have one beautiful dog named Bella. Our 2022 had been a rough year in general, with work and personal lives, but everything was turned upside down, more than it already was, on October 21, 2022. I had a routine appointment with my OBGYN every year since I was diagnosed with PCOS at 18. During this appointment, my OB was conducting an intervaginal ultrasound, and to our surprise, I was roughly 12 weeks pregnant. Shock has to be an understatement. The panic started to settle in, and the fear of the unknown also started. 

How is this even possible? First, I have had a period every 28-33 days, been on birth control, and even on other medications to help with the PCOS. The baby’s heartbeat was great and was measured at the needed measurements. As I left that office, I was nervous about telling my husband. We had not talked about when we would start trying for babies, and this, by far, was not the best time either. He was leaving his job and starting a new one. This was the same day he was scheduled to be done at the old job. I went home, dressed, and left for a concert my girlfriends and I had tickets to. I would have to talk to my husband after. 

When I told my husband, pure panic and shock came from him. He was nervous and lost. We both knew we were being careful, so he exhibited the same shock I felt. I remember him trying to make light of the situation with comments but was still lost. It took a few days to settle with the idea of what would happen. 

Fast forward to November 12, when we received the NIPT results and our baby’s gender. We did not want to do a gender reveal as we had not told our family yet since we were waiting for my sister-in-law to have her baby, and we also wanted to make sure our baby was okay. So while sitting in our garage and washing cars, we discovered we were expecting a little girl. I remember my husband always wanted girls, and I was happy. That weekend we told our families, and it was pure joy. For his parents, this would be their third grandchild, but for my parents, she was the first. We announced to the rest of the world that upcoming week and that’s when it finally hit; we were having a baby. 

The next few weeks, we spent picking nursery colors, themes, strollers, activities, and anything and everything we could think of. We had planned soccer for her as her first activity, Disney for her first trip to a theme park, and so much more. My husband showed excitement and was already getting called Dad at work. I was excited and knew that, at least for the next 18 years, I would not be alone again. My husband is a first responder and has very crazy work hours, so she was going to be my companion. 

December 16, 2022, everything changed. I got a call from the lab that my fetal protein was higher than usual. They gave me various reasons why it could be high such as twins, placenta problems, or the baby releasing the protein. I told my husband, and he was as scared as I was. I ended up in the hospital on Saturday due to my high blood pressure. While I was hospitalized, an ultrasound was performed. At the end of my visit, I was informed my baby was doing well and, not to worry, she was fine. That calmed us down, and I felt like I could breathe. 

Well, during our specialist visit, reality hit. My husband and I arrived at the center. Our appointment was at 8 am, and we waited for an eternity. When we were finally called, we were taken into a lunchroom with a genetic counselor, who asked every possible history question. I was confused about why we were being asked all of this. Well, the lab technician gave us the wrong fetal protein number. We were told it was 5.8, but in reality, it was 15.8, which a normal fetal protein for one baby is 2.4. My heart broke. I couldn’t answer anything; I was just so numb. I remember being pressured to complete some tests and procedures, but I would not consent to them. It was until my husband told her we would not consent to anything until we saw the specialist, even if we had to pay out of pocket. When we finally were done, we were placed in the waiting room for another 45 minutes, where all I saw were happy pregnant women coming in and out, and I started to feel like I was not going to be one of them.

Finally, we were taken back to the ultrasound room, where it all was looking good. The technician showed us our little girl’s head, hands, face, and heartbeat, and everything went quiet. She said, “There is a problem with the spine,” and that was the last thing she said. For the next 20 minutes, I lay there wishing it was a terrible dream. Well, the specialist came in and confirmed our worst fear: our baby would not make it. Our little girl has a severe spine problem that did not fully develop, and her little tummy never closed. My first question was about quality of life and what did that look like, and he said there wasn’t one. She would most likely not make it through delivery; if she did, it would be for a few minutes. Bringing her into this world was only going to cause her pain and suffering, as well as put my life at risk. His concern was the spine being a genetic problem, which we recently learned was not a genetic issue but rather a lack of development. Much more was discussed during the visit, but I can’t even begin to explain. The pain is what I remember and still feel.

The specialist left and gave us some time. I remember my husband helping me off the bed and just hugging me. All I could say was sorry to him. I felt so guilty and responsible for putting him and her through this. It has taken me a long time to feel less and less guilty, but I would be lying if I said the guilt was gone. We both knew what we had to do. As much as we wanted to be selfish and bring her into this world and hold her a little longer, as a parent, our job is to be unselfish and do what is best for our child. In this situation, we did not want to cause her more pain. 

The next few days were just full of numbness and pain. We let our immediate family know what was happening and when our baby would grow her angel wings. Christmas Eve came and went. This was our favorite holiday, and it was now full of pain and suffering. My husband was so lost. I remember waking up in the middle of the night while he hugged me and held my stomach crying. The pain in his eyes I will never forget. The fear of losing his new job as he had no time off available to him, thankfully they were very understanding and have always believed family comes first.  

On December 27, 2022, the first part of the D and C was started, and I was already struggling. Because I was about 20-21 weeks, I had to get some assistance to dilate. The following day, I was admitted at 9:30 am. My husband stayed with me through the entire process. He held my hand, tried to make me laugh, and helped me sleep. And at 2:30 pm, I was wheeled away, and I said goodbye to my husband. I feared what would happen, but the pain in my husband’s eyes was the same pain I was feeling. I knew that when I woke up, my baby would be gone, and she was. I woke up at 4:30 feeling panicked, and all I wanted to do was cry. The nurse and anesthesiologist tried calming me down, but I couldn’t. It wasn’t until my OBGYN came in and handed me a piece of paper with my baby’s footprint and a recording of her heartbeat. That is all I will ever have of her. Next time you see your babies, hold them tight because some of us will never be able to do that. 

As time has passed, we have gone through a rollercoaster of emotions. I have received support from many and have heard nasty remarks from others. People who I believed to be close to me have said things that have hurt me as they could never understand. With the help of a therapist, my husband and I have been moving forward and grieving in the healthiest way possible. The way we grieved has been different. I grieved immediately and felt every emotion possible, depression, anxiety, hurt, suicidal thoughts, and so much more. But now, seven months later, I feel a little better. My husband did not hit the lowest point of grieving until recently, I feel it all started around May when I was due. Right now, I am trying to be there for him and help him through the same way he was there for me, unconditionally.  As a couple, we are the strongest we have ever been, which I am grateful for. At the moment, I do have good days and bad days. And on my low days, I try to remember what a dear friend told me “Your little girl forgot something up in the sky, and she will be back.” I pray she does. 

This experience has changed me forever. I will never be the same person I was before. As the days pass, I miss my little girl more and more, but I am learning to move forward. As we talk about trying for another baby, the fear of losing them is there, and I don’t think that will ever go away. My innocence of pregnancy has been taken away, and all it has left me is fear and anxiety. But even with it all, I pray and hope that one day, we will soon be blessed with a baby who can make it earthside healthy. I will endure anything I have to bring a child into this world because, at the end of the day, holding him or her and seeing my husband hold them will be worth any pain and suffering I must endure. 

Termination for medical reasons is what I am labeled as now. Growing up, I remember saying I would never have an abortion. I was one of those people. But it is true; you don’t know until you are in those shoes. Now, I am thankful I live in a state where this is possible. I am aware some people will not approve of what we did, but it would have been selfish of us to put our child in a position to suffer. I pray and hope one day, people will understand the pain we go through and have to endure. This pain will never go away. We are told to move forward and forget by very close people, but all I can say now is let us grieve our way. We lost someone who was very innocent and loved, with no explanation. We will forever have a piece of our heart missing. I want to thank those who have given us our space and been here for us, from family, friends, and employers. Having support has been a big part of our healing process. To my dear husband, thank you for being my support system and showing me so much love; if it were not for you, I would not have made it through this. Our little angel and I love you unconditionally. We will remember her and hold her things close and very tight until we meet again. 

KMT 12/28/2022

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Miscarriage

Emily’s Story

It was the morning of New Year’s Eve 2021 and I had my first positive pregnancy test. During the month of January, I started reading pregnancy books and downloading all relevant apps. I started to plan out what the next year would look like, how far along I’d be at each holiday, when my maternity leave would be and how we’d be spending our 5th wedding anniversary with a newborn. Fast forward to February 2022, my husband and I had our first appointment with my OB at 10 weeks. She couldn’t find our baby’s heartbeat using a doppler, so she was able to get me in for a transvaginal ultrasound while we were there. We got to see our little baby and hear his heart beating for the first time. I finally felt that I could breathe, and everything was going to be ok. After my appointment I went to the lab to give blood to do carrier screening on me and the Maternit21 test on our baby. 10 days later I got a call that the lab didn’t get results on my Maternit21 test, and I needed to do the blood draw again. Back to the lab I went, I was just about 12 weeks and assumed I just tested too early, no big deal and my carrier screening came back fine.

When I was 13 weeks pregnant, I found out my Maternit21 testing did not have a result for a second time. Multiple calls with my OB, and two days later I had an appointment with a genetic counselor and an ultrasound with the MFM Doctor (Maternal Fetal Medicine). I remember the genetic counselor telling us there was a 70% chance everything was fine but still reviewed other possibilities. All I wanted was to get in for my ultrasound, hoping we would see everything was ok. When the nurse was checking my vitals, she was concerned about my blood pressure being so high and I just wanted to scream of course it is, I need to know if my baby will be ok. We finally got to the ultrasound and it was so quiet during the scan. I remember how quickly she moved on from the heartbeat even though it was good, but it didn’t matter because nothing else was. Over the next hour, the MFM doctor did two additional scans and reviewed his findings with us. The brain, heart, skull, and face were all major areas of concern. They could not yet confirm but likely club feet and/or hands. There are no words when you are told your baby had a lethal fetal anomaly from an abnormal nuchal translucency, alobar holoprosencephaly, and congenital heart defect. We learned that one of the Maternit21 tests had noise of Trisomy 13. While we were advised we could wait to do further genetic testing but not until later in my pregnancy, the diagnosis would not change to nonlethal.

We were asked if we would consider termination. This was something we talked about before we became pregnant but honestly never thought this would be an issue. I was much more concerned about actually getting pregnant and not having a miscarriage. Our options were to terminate (via a D&E or induced labor) or continue the pregnancy knowing our baby would not survive. All options were awful. Termination was not that straight forward as just a decision between me, my husband, and our healthcare team if I wanted to have the D&E at the hospital. The termination had to be to be approved by the department chair and board and all happened before 22 weeks. We were also advised that additional testing could be required if they felt it was needed before approving.

The next day, we received the confirmation that our termination was approved. Thursday felt like a scramble between all the doctor calls from the MFM checking in and letting us know of the approval, my OB calling to see how we were doing and trying to get scheduled with a new OB for our consultant and signing of the paperwork 24 hours before my procedure. Friday morning, I met with my second OB that would do the D&E and sign my paperwork acknowledging I was terminating. This was an awful appointment to being with, let alone the receptionist wanting to check me in as a new patient – same medical group but a different office location and asking why I’m there. There was some lack of compassion checking in and with the nurse, but once we met the doctor I felt more at ease. She was on call but would be coming in on Saturday to do the procedure.

On Friday I just kept cleaning, I needed to stay busy and not have any down time. Maybe I should have but I wanted to forget this was my reality and just find a way to get to Saturday.

Saturday morning came and we made our way to the hospital. I felt like we were in an empty hospital. While I’m sure it wasn’t empty, I’m thankful it was quiet. The next two hours I was prepped and was brought warm blankets to help with my shivering. It took two nurses and the anesthesiologist to get my IV in, finally it was inserted painful in my hand. I was eventually wheeled down to the OR. I hated leaving my husband in my room, I was leaving him and would be coming back without our baby. The OR room was so bright, white, and cold. I was asked to shimmy over onto the operating table and in a few minutes I was out. I woke up back in my room with my husband by my side. I was in and out for a while and shivering again until I had warm blankets once again. After a few hours, a couple crackers, and some water we were told I could go home. I wasn’t ready, I had to leave behind my baby. It was incredibly heart-breaking walking out of the hospital. The nurse gave us a sheet of paper with some resource phone numbers and information on a group burial. After many phone calls in the days that followed, I was gutted to learn we could have had a private cremation had we told the hospital before my procedure. But we didn’t know this was something we could even elect to do. I wish I could have had something physical to hang on to, but we have nothing more than our 10-week scan photos.

In the weeks shortly after, I didn’t know what to call what happened. I very much wanted to bring our baby home, but we didn’t have that option. We were asked if we wanted to terminate, but no one ever said do you want an abortion. I had a termination, technically this was an abortion, but this was hard to even admit to myself at the time. There is so much stigma around abortion and what I now know as TFMR (termination for medical reasons). But why – I could do nothing for my baby other than prevent them from any pain, that was my only option. I couldn’t change the baby’s chromosomes.

As the world learned of the Roe vs. Wade leak, I just want to scream that I had an abortion. I was fortunate to be able to go to a local hospital with my healthcare team to have this done. We were treated with compassion and care along with way, and they shared how often this happens even though you feel incredibly alone. This did trigger me to share more of my actual story on social media. This needs to be shared, we shouldn’t feel stigma around baby loss the way we do today. Too many couples are going through this awful loss and feel so isolated.

About a month after my D&E, we received the genetic testing from our baby. An extra chromosome 13 was confirmed, trisomy 13. In addition, but unrelated, they found that the baby also had a Balanced Robertsonian Translocation between chromosomes 14 and 21. Knowing this meant myself or my husband could be a carrier which could affect future pregnancies. Our genetic counselor worked with our insurance to get the testing approved. This was a very challenging time for me waiting to get tested and then waiting for our results. If one of us was a carrier, we would have a much higher risk of having a pregnancy that is not compatible with life and likely either early miscarriage or having a nonviable pregnancy. I feel very fortunate that we both have 46 chromosomes and are not carriers. They did express that our chance of this happening again is low, but more than had it not happened the first time. Also, there is still a risk of Germline mosaicism, where the sperm or egg have a mutation that is not presented in the rest of our body but as of now, it is believed this was two spontaneous genetic occurrences. We were essentially struck by lighting twice.

I remember being annoyed that I would only have one ultrasound at my 20-week anatomy scan. I was annoyed that our baby was due September 11, it was grandparents day this year but also felt like it was clouded with 9/11. Never again will these things matter.  The idea of being pregnant after loss is challenging enough but now that Roe was overturned and my state no longer allows abortions for any reason it is terrifying. 

While I wish pregnancy loss and lethal fetal anomalies would not happen to anyone else, I know this is not reality. But what I can hope and push for is more compassionate and empathic care. That others feel that they can tell their family and friends the truth and not be judged. That our families and friends can be allies and support reproductive rights. And that all abortions and terminations for medical reasons are covered by insurance, at your local hospital, at any week during pregnancy because no parent is making this decision on a whim. This seems so basic but it really feels so unattainable in our current political state. Reality for me, is if I was in the same position 3 months later, my termination would not be covered at all by insurance, I would need to travel to another state and am very unclear of what type of hospital or clinic I would be able to go to.

To my family, friends, and wonderful online baby loss community, I see you and thank you so much for being vocal, for simply liking a post and being an ally around abortion care. To all those who do not, I see you as well. I don’t know if this is a I don’t talk about politics online but not saying anything to me about this or even simply not liking a post that includes the words abortion or termination hurts. It cuts deep. I feel like I’m wearing a scarlet letter and those who are silent, make me feel so unsafe.

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Stillbirth

Megan’s Story

Gwendolyn

My partner and I were so excited and surprised to find out we were expecting our first child in September 2021. We had a relatively smooth first trimester, and elected to do NIPT testing which revealed we were having a girl and our daughter had a 50/50 chance of having Turner Syndrome (monosomy x). From that moment, we were determined to learn all that we could about Turner Syndrome and prepare for our child. We were told that she probably didn’t have it because up to that point her ultrasounds had been good. We decided to move forward with an amniocentesis, and were seen at 16 weeks. It was at this ultrasound we first learned our sweet Gwendolyn had a large cystic hygroma, hydrops, and all of her long bones were measuring short. These are all symptoms of Turner Syndrome. We chose not to move forward with the amnio because we didn’t want to increase risk of harm to Gwen, and we were determined to make it to have a living baby. 

Fast forward to 21 weeks, and we had Gwen’s anatomy scan and fetal echocardiogram, and we were told this would be a two hour appointment. Pretty quickly into the ultrasound, it was determined that Gwen’s condition had worsened significantly. Gwen’s cystic hygroma had grown to include her head, neck, back, and arms. Gwen’s hydrops around her heart and abdomen had increased in size and due to her positioning, the tech couldn’t complete the scan in its entirety. About 15 minutes into this, the tech stopped the scan and said she was going to get the doctor. I will never forget this horrendous interaction with this doctor. They came into our room and said due to low fluid around Gwen (she was absorbing all of the amniotic fluid) and her large cystic hygroma, they did not think additional time would benefit the scan, and so it was ended. Essentially, the doctor proceeded to tell us everything we’d heard before and could tell us nothing hopeful about our beloved daughter. 

The next week we had our first appointment with our MFM specialist. During that appointment we were asked if we were hoping Gwen would pass on her own, and I instantly said yes. It was evident after our last scan we would not be bringing Gwen home. We had been so determined not to terminate! We wanted our daughter. During this appointment, after exploring the risks, we decided the best thing we could do for our baby was TFMR. This gut-wrenching decision was made with nothing but love and a desire to prevent our daughter from suffering. 

On 2/7/2022, we arrived at the hospital for the procedure knowing we would be admitted after to start induction. On 2/8/2022 Gwendolyn Faith was born.

We were able to spend about 12 hours with Gwen. Leaving the hospital without her almost killed me. Thankfully, the funeral home we used quickly had her ashes to us days later. 

Unlike a lot of people I’ve met on this journey, we opted out of additional genetic testing and an autopsy—to us we already knew what was happening with Gwen. We felt no reason to continue testing when the outcome wouldn’t change. 

In the time since losing Gwen, life has honestly been difficult. My milk came in, and that was another hurdle to overcome. It dried up in about a week, but ultimately was a reminder she wasn’t home. All of the clothes and baby items we purchased sit untouched. We found a support group locally, and I’ve attended several group sessions online. I also go to individual therapy. 

My goal in writing this, is that those going through this don’t feel alone. I felt so isolated because I don’t know anyone else who’s been through this process. Making the “choice” for termination never felt like a choice. We simply wanted to promise our daughter she would never know suffering. We will forever be grateful for the time we had with our beautiful, perfect child. 

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Pregnancy After Loss

The “Rainbow Baby” Connection

CW: mention of living children, birth, pregnancy after loss

I love a rainbow baby.

I mean this literally and generally. I am lucky enough to have a rainbow baby to love and adore.

Rainbow babies fill me with joy. They carry so much hope and have so much love in their corner. Their existence is a testament to the literal blood, sweat, and tears it takes to conceive a child.

But what if you don’t get a rainbow baby?

What if that term frustrates you?

What if the thought once gave you hope but now it’s fleeting?

What if you don’t get to find out “what’s on the other side?”

What is a “rainbow baby?”

A rainbow baby is a term used to describe a baby or a pregnancy that comes after pregnancy or neonatal loss. It is often used as a symbol of hope, just as rainbows can come after rain, like healing after a hardship.

Some people are not a fan of this term. It often gets branded as a misnomer… “why would the baby that you lost be a storm?!” Calm down, Karen. He’s not. And no one thinks that he is.

The “storm” loss parents are referring to is the turmoil, pain and heartbreak that happens after a loss. A baby is a symbol of joy, of new life, no matter how they came to be. Even parents that have experienced loss after a surprise or unplanned pregnancy or had to terminate for medical reasons still experience grief from their loss. The devastation of pregnancy or infant loss is a dark and isolating event, similar to a storm. Alternatively, a rainbow is a symbol of hope, a promise of good to come.

I love the term “rainbow baby” and use it frequently. My daughter will know what it means as a reminder of how wanted she is and how hard we fought for her to get here.

But what happens when you fight and beg and plead and bleed and fight some more and the rainbow doesn’t appear? What if the storm continues and the sky refuses to clear?

“Who said that every wish would be heard and answered when we wished on a morning star?”

This is my problem with the term “rainbow baby:” a rainbow is not guaranteed.

Pregnancy after loss is a part of some people’s stories, but not all. Telling someone it will be “their turn soon” may sound right in the moment and feel secure, but what the loss parent won’t tell you is they wonder every day when “soon” will be. When will this storm pass?

A rainbow is not a symbol of how hard someone fought for their pregnancy. It’s easy to think “since she has a rainbow baby, she did something right. Since I don’t, I did something wrong.” If you’ve ever tried to conceive a child you know that it’s not all that simple. You know how the stars, the universe, prayers, chakras, WHATEVER have to align in order to see those two pink lines.

A rainbow pregnancy does not equal success. Maybe you decide to take a much needed break in your journey. Maybe you decided to adopt or foster. Maybe you had the courage to keep going, even when you thought you couldn’t. Your “rainbow” can be whatever good comes after a loss.

“Rainbows are visions, but only illusions…”

On the same token, rainbow babies do not replace the babies that have been lost. While it is truly an exciting moment when a pregnancy after loss can be announced or a baby is born healthy after a loss, the babies that came before still exist to those parents.

Many feel like there is a timeline for grief, often convinced that there are “stages” you must go through. Once you have gone through the stages, you’re cured!

Grief isn’t a disease. There isn’t a cure. It’s something that lives in your soul, some days taking up the most space it possibly can, growing so strong and so overpowering, you feel like you might explode from the pain.

And some days, grief is simply a resident. Sitting quietly on a bench, holding the hand of its strong and more powerful friend; hope.

A rainbow baby does not replace the babies that have been lost, it is just another baby we’ll love and honor and protect as long as we live.

“What’s so amazing that keeps us star gazing and what do we think we might see?”

For some families, pregnancy after loss becomes a part of their story.

Right after my miscarriage I thought, “if I could just get pregnant again, I would feel better!”

Wrong.

Pregnancy after loss is a loss of innocence. You know everything that can go wrong. How it feels, what to look for, what is a “bad” sign, what is a “good” sign. And so many of these “bad” signs can also be just very normal things; cramps, bleeding, abdominal pain.

I’ve heard this said many times; pregnancy after loss is like holding your breath for nine months. During that time, it is a constant battle of what we “think we might see” once we hit each milestone:

“Once I hear the heartbeat, I’ll feel better.”

“Once I make it out of the first trimester, I’ll feel better.”

“Once I can feel kicks, I’ll feel better.”

“Once I get to the anatomy scan, I’ll feel better.”

“Once I make it to the third trimester, I’ll feel better.”

“Once I make it to labor and delivery, I’ll feel better.”

And the truth is, you may not “feel better” until that baby is crying in your arms.

There was a time at the end of my pregnancy with my daughter where I truly wondered if I would be taking a baby home from the hospital. Nothing was wrong, my miscarriage just taught me that nothing is guaranteed. I would start conversations with “God willing I bring this baby home…” or “assuming all goes well…” I thought about how many mothers go into the hospital in labor and come home with an empty car seat. This “rainbow” business is knowing that while hope is present, sometimes it’s all we have to pull us through these terrifying possibilities. Even though I was lucky enough to experience a rainbow pregnancy and have a healthy “rainbow baby,” it didn’t feel all that “rainbow-y” in the moment.

While rainbows are bright and colorful, a rainbow pregnancy can still be clouded with fear.

While rainbows are cloaked in sunshine, a rainbow baby can (and will) have dark and difficult days.

Just because you see a rainbow, doesn’t mean the darkness still can’t creep in from time to time.

“Why are there so many songs about rainbows?”

Someone on my Instagram shared that the term “rainbow baby” felt like “a club [they] really didn’t want to join.” I hear ya. I would like to unsubscribe as well.

Some people just hate the term. And that’s okay.

It’s not a perfect label. It is not all-encompassing and truly, it is hard to reduce the pain, suffering and love you feel if you have lost a child to one word.

Maybe you prefer “miracle baby” instead.

Maybe it feels cheesy to you.

Maybe it feels overused.

Maybe you’re “rainbow-phobic.” (Is this a thing?)

No matter how you choose to label your pregnancy or baby after a loss, that “club” (the lovers, the dreamers, and me) is always here to support you and cheer you on.

Song lyrics by Jim Henson, “The Rainbow Connection.”

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