TFMR Stories

April Rey was induced early after learning of her full trisomy 13 diagnosis. Her entire story (multiple posts) can be found at this link.

Some of the posts you'll find here:

- Starting with the cell free DNA test and our experience

- Finding out our amniocentesis was positive for trisomy 13

- Asking our genetic counselor questions

- Why would we ever consider not fighting the fight?

-Getting more information and our plan

- The worst fears I HATE admitting about the trisomy 13 diagnosis

- 17 week anatomy scan

- One week until induction day

- April's birth story and so much more

Our story has not ended. The events that took place are over, but our healing is just getting started. My life changed forever over the course of 20 days. It changed indefinitely with the birth of my beautiful baby. It continues to change each day without my son. I know that it will never be the same again. I can only Hope we can find a way to get through this. I was absolutely meant to be a mother. I was meant to be his mother. It has always felt like my sole purpose in life, and it is hard to grasp that my purpose is gone. I catch myself looking at the clock every day at 5:31pm. I miss my baby so much.

First of all, before I begin our story of love and loss, I want to reach out and tell you how sorry I am that you are finding yourself here, reading these stories. I’m assuming it’s because you are facing the same choices or have already faced it like we have. I wish I could hug you mama. I know this is probably the darkest time of your life. Right now I’m sure your heart is shattered, broken into a million pieces, and you have no idea how it’s ever going to be put back together. I know the pain. I know the sleep deprivation. I know the middle of the night obsessive internet searching of medical terms, prognosis, and statistics. I know what it feels like to hit rock bottom and beg and plead with God to tell you what to do, to let you wake up from this nightmare. I know the confusion of feeling your baby kick so strongly inside of you, and wonder how it can even be possible that your baby is so sick. I’m so sorry.

"This date would put me at 20 weeks and 2 days.

If for some reason my husband and I had decided we wanted to terminate this pregnancy, we would have to do it before our appointment at MFM.

Earlier this year, Ohio passed a law banning abortions after 20 weeks gestation, regardless of a fatal diagnosis for the baby."

This is a story of a baby that had trisomy 13. Full trisomy 13.

She was born early (and not by termination).

She survived a few days.

It is an insightful story to anyone considering termination, however, so I wanted to include it here.

"Truly every step counts in this amazing adventure we call life. Some steps leave deeper and longer memories because we were not alone. "

An anonymous story of a baby that had CMV.

"My brain is ok with what I had to do, all of my doctors are in agreement with what I did, all of my family, friends are in agreement with what I did (those I've told). But my heart still aches and mourns for a daughter that I so so desperately dreamed of. She was going to be beautiful and smart and make my family complete."

This is LAELYNN’S story. It’s one my family was a part of. It has brought me to my knees so many times and it was the hardest decision we’ve ever prayed about and been given answers to.

Until you’ve been put in an absolutely impossible situation as we were, you can NEVER know what you would have chosen at that given time. I pray that no one else I know would ever be put in such a horrible situation.

This Mama, tragically lost her baby girl, Ellie-Mae, to Turner syndrome. She made the agonizing choice to terminate for medical reasons. 

At the end of that first appointment they took blood to do the general genetic testing. Those results later came back negative for trisomy 18, 21 (Down Syndrome) and Turner Syndrome. We learned later that this was a false negative.

To be honest, saying those words out loud to the doctor shattered my heart. I felt like a terrible person. I had lost my baby before I ever really got to meet him, and I loved him so much. More than words can truly express."

"The doctor told me I needed to terminate immediately. In shock, feeling like I couldn't breathe, I ran out of there. I called my OB on the emergency line and explained to her what had just happened."

"While this was a terrible diagnosis, she explained the silver lining.  This was not something that A and I had passed on – it was a “fluke” and we had no higher chance of it happening again than anyone else my age. "

"It was the HARDEST decision I’ve ever had to make, but when I thought about my son’s chance of survival, and not only that but what kind of life he would live if he made it, it just didn’t seem right to me to put such a tiny baby though that."

This is the story of Zoe Jane. She was diagnosed with trisomy 18, Edward's Syndrome.

The doctor sat there with tears in her eyes and said "I'm giving you 2 shitty options," which was true because neither were what we envisioned for our baby.

At first the doctor said that my anatomy scan came back abnormal for the baby. It appeared to be Down Syndrome or possibly spinal bifida.

I was devastated. I didn’t want my newborn baby to be sick. I never imagined this would happen. I never thought this would happen to ME. At 18.

I was thrown into a deep depression.

I might sound harsh but I’m in a support group that is filled with women who have or are going through the same thing as we did and we all feel silenced. Forced to grieve alone in fear of judgment, in fear of what reaction people might have when all we want to do is tell our story and be able to talk about the babies we lost.

So please, think about that before you say horrible things about people who choose this. They are most likely people who are close to you and are afraid to say anything.

The next 5 days would feel like an out of control, out of body nightmare. Lost without direction. I didn’t want to see my reflection, looking aged and broken. A bump that still had life that I couldn’t ignore. It was a heavy haze that smothered every thought day and night, with a little reprieve from my 3-year-old who was both stretching my patience and bringing me desperate distraction and joy. My husband struggled to hold me with this physical heaviness between us. This unknown. I wished to miscarry. I begged for a miracle. I hoped for this decision to be taken from me.

Fast forward to that scan- our cheerful day turned into a day of pain, tears and fear.

Reagan’s ventricles had enlarged and it was questionable if her corpus collosum had developed.

A fetal MRI was ordered, and our physicians were puzzled. Nothing about Reagan fit a textbook.

How could our child who is so perfect, is measuring on scheduled, has 10 fingers and 10 toes, have something so wrong?

"Did they think I was just another abortion?

I personally do not refer to my experience as an abortion. I’ve learned that other women also do not use this terminology.

I chose to label my experience as a termination of a very wanted pregnancy for medical reasons. The terminology is important."

I had the MRI and it took another week to hear results. It came back that the structure of the brain appeared normal, although it was small. But that didn’t necessarily mean that the brain was going to function as normal. It was frustrating that there was no clear answer to what was actually wrong, but we tried to stay positive.    

"On the Wednesday, my mother drove us to the hospital and I started to think about how excited I was to pack my bag and go to the birth center and meet our little boy.

Instead the first wave of grief caught me off guard as I realized that I would go to the hospital with a baby and leave with a box."

I finally broke down to my husband and told him, “I can not let my baby suffer trying to live just so I can have him here. He will be in pain trying to survive in a world he wasn’t meant for.”

I was told that termination was my only real option, as having her continue to grow inside of me, only to die and be still born, would be both physically and mentally much worse for me than ending it now. They told me my chances of giving birth to a live baby at 9 months was slimmer than my husband giving birth right then and there.

I hate that I have baby weight to lose and no baby
Yet, I love that my body was capable of carrying him for all those months

I hate hearing “sorry for you loss”
Yet, I love the support of my friends and family during this difficult time

I hate reflecting back on the pain of the labour and delivery
Yet, I love that I brought him into this world and could feel every second of it

I hate that the day I said hello was the same day I said goodbye
Yet, I love that I got to hold him, kiss him, and sing to him

I hate that we made the heartbreaking choice to end his life
Yet, I love that we were able to save him from any pain and suffering

Waiting for the results of the fetal echo was agonizing. My mom and my husband waited with me at a table in this tiny, sterile room, just trying to pass the time. On the table sat a Kleenex box and a 3D model of a heart. Kleenex, bad sign.

A mum that endured 7 miscarriages, 1 ectopic, and 1 TFMR. The TFMR happened during COVID. This is anonymous guest post.

We picked 2 names we liked for him and let our sweet daughter crawl up to the scrunched up pieces of paper with the 2 names on them and let her choose one…her hand grabbed one straight away and we unraveled it.

Our little boy was called Owen and that’s how he was referred to from then on! Looking back now it warms me that his big sister ultimately chose his name.

But I am not alone, Sam. I am part of a group of strong women and I've become friends with many through a shared loss.

I’ve heard countless stories of mothers who have walked solemnly and secretively in my shoes.

I know that I chose this path and this pain for you like they have.

I chose the pain so you wouldn't have to feel any.

Eventually, she stopped her work and told us, “I think there’s something wrong with your baby.”

We were left alone while she went to get a senior midwife and, honestly, I don’t remember if my husband and I even spoke in that time.

We’d both been hugely caught off guard.

I sit here now without a child. But I want you to know that I had a labour. That I gave birth. That I joined you, women who have birthed. That I too was in those truly vulnerable moments of labour of being fully in my body and its pain, and not in my thoughts. I was in my body-thoughts. My body was doing the thinking, the everything. Truly embodied.

I terminated my pregnancy, so my beautiful perfect daughter would never have to suffer.

She passed peacefully inside my womb, warm and completely surrounded by love!! 

I’m broken. We’re all broken. We forget things now. We aren’t ourselves. We’re always tired. We’re always scared of the next time. There will ALWAYS be a before and an after Elias. We even use that as a measurement of time now “That cheese has been in the fridge since before Elias. Throw it out.”

I wish this was a story with a happy ending but it’s not. I’m not okay and that’s going to have to be okay.

That afternoon I sat and waited for my husband to get home and talk about our options. We talked and agreed that at 13 weeks we would make the decision to let her gain her wings before we could start to feel her move.

I had suffered from depression and anxiety for years and was finally in a good place, and we were worried that this would send me downhill.

What he said next confirmed my fear. And shocked both of us – “your son doesn’t have kidneys, a bladder, or amniotic fluid, his brain is prolapsed, and his prognosis is grim.”

They told me that my baby, that I had so longed for, wouldn't survive as he had developed without kidneys and was unable to produce amniotic fluid, and because of this his lungs also wouldn’t develop. I couldn't stop crying. I just held my baby bump and cried.

"Emily was born at 23 weeks 3 days. She was sleeping.

We held her, kissed her, cried for her, apologised to her.

She was absolutely beautiful.

She had the most beautiful little button chin I’ve ever seen.

She was just perfect, devine."

I was very shocked and devastated when they told me I’d die if I reached more than 20 weeks of gestation and that would happen in 5 days. They asked me to terminate the pregnancy!

She explained that there was a translocation of 3 chromosomes (no’s 2, 7 & 20), which means something along the lines that some of chromosome 2 is on chromosome 7 and 20 and vice versa. Now, translocations aren’t necessarily a bad thing, when they are balanced, as you still carry the same amount of gene matter, just in a different configuration, but, balanced translocations tend to happen between 2 chromosomes, not 3.

It only took 9 hours for my body to be ready to birth Aurora. It was in the middle of the night that my labor became unbearable and I knew she was almost here. I felt her crown and leave my body. I was terrified to look but the nurses assured me that she was born in her sac and was perfect. They wrapped up my little girl and brought her over to me. I was astonished.

She really was perfect. She looked as I hoped she would.. she looked just like her sister. She was a carbon copy of Blake. The familial resemblance was like nothing I had ever seen and due to the symptoms of the syndrome they shared they looked like the same person.

Imagine coming to the realisation that death is the best thing you can do for your child. That the cold empty eternity of death is the kindest decision that you, as a mother, can make for your child. That the alternative, giving your child life, is worse. That your child’s life would be so short and so crippled with pain and suffering that it is best that they do not have one at all. Imagine that is your choice. That is your choice, even though every single fibre in your body is SCREAMING at you to protect your baby. To keep her safe at ALL costs. To run away and hide from the world so you do not have to make this decision and can instead ignore reality and be together forever. That despite all of that being true, you still make that choice. You make the call...

"Our baby had cloacal extrophy which is an extremely rare condition, where not only is the stomach and bladder out of the body, but the genitals and anus are not formed and completely split into two. In addition to this there were also spinal deformities.

This is when we had to make the most difficult decision of our lives."

I truly believe what I have read and seen so many times: that I chose to suffer so that he would not.

How true that has been. 

How could I be pregnant when my mom just died?

We were not planning on getting pregnant at this time. My entire world was upside down and I couldn’t comprehend anything that was happening. I had to now go back to work learning how to grieve and having this secret of being pregnant.

"And I could only mutter that 'she is broken her bones, her joints are all messed up.'

Moments later the doctor came back and explained everything to us. He explained how almost every joint in her little body was crooked and contorted, that she had a slim chance of making it full term, and, if she was lucky, she would spend her entire life having surgery after surgery just to look somewhat normal."

"The doctor came into the room in such a hurry and was very concerned. He took a deep breath and started explaining that my sweet baby Emma had several different types of defects, and that he could not diagnose her with just one syndrome."

Although it was hard, I am glad that my little munchkin didn’t have to suffer any pain, or any surgeries, or any limitating defects.

A peaceful pass, feeling no pain, but still loved as if with us still to this day.

"There is no foot too small to not leave and improve on the world.

Forever in our hearts."

Whether you choose to keep the post anonymous, or put your name and photo on it is completely up to you! I do hope, however, that you choose to share. That you choose to share your story with the world.

The story of Ida (Trisomy 21)

Amari's story (Fragile X)

Greer's Story (Amniotic Band Syndrome)

A fellow mom who TFMR at 20 weeks due to triploidy.

Stories and support for TFMR

Stories and support for TFMR

A safe place for those who have faced or are facing Hyperemesis Gravidarum loss to come together to share experiences.