My TFMR Story

The Positive Test

After four years of infertility treatments, three failed IUIs, three retrievals that resulted in only two PGT-tested, normal embryos, it had only taken one transfer. I was pregnant with a second child - a boy.

I was so happy and so anxious. I kept thinking, “Could it really be this easy? All those tears and anxieties and then BAM - pregnant after only one transfer?”

I didn’t wait for the blood test to confirm it. I shared with my father the wonderful news on the day he entered hospice. He was still able to talk and share his happiness when I told him the blood test confirmed it. I told him I loved him and we would name our son for him. He died of cancer a week later, two days before my first scan at 5 weeks.

At the funeral, I told a few friends that I was pregnant. It was far earlier in the pregnancy than I wanted to tell people, but I needed them to know. I didn’t know how I could handle losing this pregnancy after losing my father.

“If I miscarry,” I said, “I’m going to really need your support.”

At that time, miscarriage was the only way I feared more heartache. I was so naïve.

 The Scans and Diagnoses

The first trimester was, in fact, easy. But I was still anxious. Health issues had arisen early in pregnancy with my older, living child. I had been through the uncertainty of years of infertility. These experiences made it hard to simply trust things would be okay.

Although the IVF clinic had done genetic testing, my husband and I chose to do NIPT. We even did a private ultrasound at 16 weeks. We wanted to be absolutely sure before making a public announcement. Everything looked good.

On June 16, 2022 – just eight days before the Dobbs decision – we posted on Facebook a picture of our daughter and our dog, with a letter board reading:

Baby Boy Chesney
November 2022
Blessed

Even so, I still feel anxious going to the 20-week anatomy scan. I told myself it was just “old anxiety” being triggered. My husband and I smiled and laughed during the scan, which was seemingly uneventful. The tech left, and a short while later the maternal fetal medicine physician entered the room.

“Your baby is okay,” she told us. “But I think it’s best if we go to my office to talk.”

I turned to my husband, offering him my hand to reassure him. Naively I thought about how we had been through this before with our daughter. She was alive and living a generally healthy life.

The doctor sat down at her desk and picked up a piece of paper filled from top to bottom with the list of anomalies found during the scan.

The rest of that conversation is a bit of a blur.

She talked about heart issues, the apparent lack of a corpus callosum and hydrops fetalis, or simply, hydrops. Hydrops is a rare, serious condition that was leading to fluid surrounding multiple organs in his body.

The severity of the situation was immediately clear. My son was incredibly sick.

I was the one who brought up abortion, not the doctor. I wanted my son. But I did not want him to have a life of suffering and pain.

We agreed that before making a decision, we would get a second opinion. We are fortunate to live near the Children’s Hospital of Philadelphia, one of the best children’s hospitals in America. The staff at its Center for Fetal Diagnosis and Treatment have dedicated themselves to finding ways to bring life into the world even in the most difficult situations.

Things moved very quickly. Within a few days I had a fetal MRI, fetal ECHO and a two-hour anatomy scan. While in between appointments, I searched the internet. Looking up the diagnoses and prognoses…anything that might provide hope. The only thing that brought me comfort was finding the term “termination for medical reasons (TFMR).” For some reason, having a specific name to my experience made me feel less alone. 

A few days later, we sat in a room at CHOP with the same doctor who had been there for us through the issues during the pregnancy for our living daughter. At those appointments she told us, despite the concerns, that our daughter looked good and would grow up to have a good quality of life. This conversation was very different.

She expanded upon what we learned at the 20-week scan. His heart was failing. While his brain did have a corpus collosum, he was likely developing hydrocephalus. And, as the first MFM had said, he had hydrops. The CHOP doctor compassionately explained that he would probably die in utero. If he did survive to birth, she said, his life would likely last mere moments and be filled with extreme pain. We later learned there were so many other things wrong with his tiny body, but these were the most concerning and impactful.

She added that while hydrops is rare, once there are hydrops present, a condition called Mirror Syndrome is quite common. In Mirror Syndrome, the birthing person develops fluid around their own organs, which is just as life-threatening to them as it is to the fetus.

The CHOP doctors – the ones who, as I said, do everything in their power to bring children into the world – looked my husband and me in the eyes and told us it was time to end the pregnancy.

The Goodbye

When I called to make an appointment for an abortion, the intake nurse asked if it was a wanted pregnancy.

I responded, “This is a very wanted pregnancy.  This was an IVF pregnancy that took multiple years and thousands of dollars. This is my Baby Boy, who is loved and wanted. But he is very sick, and this is the only way I know how to take care of him.” 

The OB-GYN who would perform the procedure was so kind. She provided guidance around options for saying goodbye regarding my wishes and his remains. And she assured my husband and me that we were loving parents.

We left for the hospital before sunrise. In a dark and silent car, I held my stomach and felt his kicks.

The caring nurses let my husband stay by my side during surgery prep, which was definitely against the rules. We sat there holding each other, holding my stomach, saying a prayer, telling our son how sorry we were and how much we loved him.

The team performing the termination was so warm. I could feel their sorrow, no judgement, just sorrow. The doctor once again told me I was a loving parent making a loving choice.

The last thing I remember was the nurses wheeling me into the operating room. In what felt like an instant, I was waking up in a recovery room feeling empty. The only solace I had was a memory box which contained his footprints. I touched them and cried.

It was over. My son was gone.

We had his remains cremated and put in three urns. We buried one urn with each of his grandfathers, both of whom had previously passed away. I also held onto an urn to keep at our house. I have already decided that when I die, I want to be buried with my son’s urn.

The Healing

In the days, weeks and months that followed the termination, I was a mess.

I am a psychologist who specializes in grief and loss. I help people going through the worst times of their lives. I help them find hope in despair, meaning in senselessness, and joy in pain.

But I struggled so much to do that for myself. I cried. I felt hopeless. I went through the motions of life without having the slightest idea how I would ever stop hurting.

Good therapists often themselves see a therapist. This helps us to make sure we separate the challenges we go through in our own lives – as every person does – from the work we do to help others.

So, I already had an amazing therapist. I assumed she would not judge me, but I still texted her to give her “permission” to say she could not work with me following the termination. We live in a world that is divided on abortion, and there are some therapists whose beliefs would impact their ability to support me and other parents like me. Luckily, my therapist responded with compassion and empathy and told me she was “in my corner.”

Even still, I wanted another person to help heal this particular broken part of me. I searched far and wide for a therapist specializing in TFMR. All I found were specialists in maternal mental health, only a handful actually specialized in working with termination for medical reasons.  While all pregnancy losses are painful, they are also all unique. And I knew my TFMR came with a sadness filled with guilt and shame for a “choice” that never felt like a choice. I wished for a therapist who would not just empathize with this, but understand all the intricate dynamics as well to best help treat my pain. 

One of the rare rational thoughts I had during that darkest time was that if one day I did not hurt so badly, I would use my skills and expertise as a psychologist and a TFMR mom to help parents like me.

My journey of healing not only included individual therapy but also support groups. Talking with others who went through this loss made me feel less alone. We were there for each other through due dates and holidays, family struggles and attempts to get pregnant again. In them, I found a glimmer of hope - hope of healing.

With them and with others, I told my story - my son’s story.

I have the privilege of my circle being one where I felt safe to tell my story – surrounded by generally liberal and pro-choice friends, family and colleagues.

And as I shared my story, what truly stood out was how many other people had similar stories. People from high school, old jobs, the neighborhood all had their own stories of the loss of a wanted pregnancy. Some were terminations for medical reasons. Some were stillbirths. Others were miscarriages. Regardless of the details of their loss, they talked with me, hurt with me, cried with me and, most importantly, honored my loss and the existence of my son.

The Continuing Story

In time I made meaning of the loss of my son and found ways to connect to him. For one, that letter board that announces his due date clearly sits on a shelf in my kitchen…while it still holds some pain, it reminds me I am blessed. Blessed to have carried him and been the best parent I could for him. 

I share my story publicly to advocate for access to life-affirming, lifesaving and life-empowering care for women and families. I do it both for me and for those who do not have the privilege of being able to safely share their story. And I do it for my son to ensure his existence has a positive impact on this world.

Now, I also use my skills and expertise as a psychologist, who specializes in grief and loss, to help parents impacted by termination for medical reasons/terminations for fetal anomalies.

Learning to live with grief means learning to find a way to hold the person you have lost and their love in your heart. Healing can come from a creating continued bond with them, even though they are not physically here.

One of the greatest honors and privileges of my work is getting to know my patients’ loved ones, even though they have passed. My patient’s loved ones live on in their hearts, and through our work, their loved ones live on in my heart, too.

Thank you for taking the time to read Baby Boy’s story. Not only does he live on in my heart, but he now lives on in yours.

Your Story

If you are looking for hope after the devastating loss of ending a wanted pregnancy, you can contact me here. I would be honored to help you, to get to know you and to get to know the child you love.