At Clue, we believe everyone deserves the right to make their own health decisions, free from judgment, misinformation, or shame, informed by personal choice and/or the guidance of a healthcare professional. This is a personal story from a member of the Clue Community and reflects their individual experience. Your healthcare provider can give you advice on your specific needs and situation.
From the moment I fell in love with my husband, Laurent, I knew I wanted to have a family with him one day. After watching many women in my family struggle with infertility, I knew I didn’t want to wait. So I was perhaps slightly more ready than Laurent when one summer afternoon I came home from work and announced that it was time.
Our relationship up until that point had been so beautiful and easy. There wasn’t a thought in my mind that this next stage of our lives together would be any different. To our surprise, we got pregnant on our first try. We didn’t think it would happen so fast, but it did. We were one of the “lucky ones”.
The first trimester flew by with ease. We did the routine blood tests, ultrasound, and some extra genetic testing. Everything seemed to be progressing well. We went on our babymoon trip to Chicago, and announced to our friends and family that we were expecting a baby boy.
Then came the day of our 20-week ultrasound exam where we would get to see the limbs and major organs in more detail. As the ultrasound technician placed the probe on my gelled tummy, we beamed at the screen as the black void turned into a silhouette of a baby – our baby.
Our excitement quickly turned to unease as the technician suddenly became very quiet. We could tell from her face that something was wrong. After what felt like an eternity, she finally spoke, “I’m just going to get the doctor.” We weren’t scheduled to see the doctor that day, so we knew something wasn’t right.
The doctor came in and began to explain straightforwardly, “What we’re seeing is inflammation on the back of the brain, in the ventricles.” He continued, “It’s possible that this could lead to some developmental problems. We’re going to send you to a specialist to find out more.”
Now, let me tell you that I’m a very optimistic person. It didn’t sound fatal. At that point my outlook was still positive; I truly felt like everything was going to be okay.
The following week we saw a genetic counselor – and that’s when everything became real. I think she had assumed someone had already explained the severity of the situation because she immediately started discussing “options”.
“What do you mean options?” we asked. The only option was to have this baby, we thought to ourselves. “It might be that he never crawls, never walks, never talks.” She continued, “Or it could be that he passes shortly before or after birth…”
And then, for the first time, she brought up two words parents-to-be never want to hear: medical termination. We were caught completely off-guard; we were expecting solutions, certainly not this.
Over the next three weeks came a myriad of tests to find out the severity of the issue and the cause. More ultrasounds, blood tests, and an amniocentesis (a prenatal test to check for genetic or chromosomal conditions). The tests confirmed it wasn't an inherited genetic condition, an infection, or a compatibility issue between Laurent and me. While that was reassuring, it became clear to us that the problem was severe, and we were the anomaly. The ultrasound showed a mass that appeared to be a brain bleed and so much inflammation that parts of the brain, in particular the cerebellum which plays an important role in things like motor control and coordination, would have no room to continue its development. Our world was turned upside down.
We left the appointment with a decision to make. We were hyper-aware that this was the type of decision that could end our marriage if we weren't on the same page. We vowed to communicate closely with one another.
Laurent and I knew we wanted to have multiple children, so we pictured our future family. If we continued this pregnancy and our baby was born with severe developmental issues, how would it impact our family? Would we have time for our other children? Could we handle it financially? These were important questions we needed to ask ourselves, yet the answers made the decision no less difficult.
More than anything, we wanted someone else to make the decision for us. We were given all the information, but we weren’t medical professionals. How could it be up to us to make this decision?
We felt that it was easier for us to remove emotions from the equation and stick to the facts. So, I sat down one day and tried to make sense of all the information and reports they had provided us with. I read every word in detail, and looked up terms I didn’t understand. I went on the internet and read up on everything I could find on brain inflammation in utero.
Now, I do not recommend that you turn to “Dr. Google” – but for us, it helped us to accept that the prognosis wasn’t good and our son would never have a prosperous life. We came to the difficult decision to go forward with the medical termination.
Twenty-four weeks into the pregnancy, we packed up an overnight bag and headed to the hospital with deep sadness in our hearts knowing that we would be returning home empty-handed. At the hospital, we met with a new doctor who would be carrying out the termination. One last ultrasound needed to be done before she would administer a medication that would end the pregnancy. The doctor began scanning. Again, there was silence and a furrowed brow as she examined the screen. Finally, she spoke: “I’m not convinced.”
“What do you mean, you’re not convinced?” She explained that while the inflammation was still present, she wasn’t seeing the mass, previously thought to be a brain bleed. Since there isn’t a gestational limit for termination where we lived, we still had time to see if the issue would resolve on its own. She asked us if we were willing to wait a couple more weeks, and do a fetal MRI. She also suggested we go light a candle at our local chapel, despite us not being religious. There it was: a glimmer of hope. We decided to have the MRI done. And we did go and light that candle.
The results of the MRI came in and confirmed that the mass wasn’t a brain bleed. Unfortunately, the good news ended there; the inflammation had progressed, and the brain was underdeveloped. We were devastated. We again spoke to our genetic counselor, OB/GYN, and a neurologist, and for the second time, came to the decision to go forward with the medical termination.
It did not escape us that we were one of the fortunate ones, by virtue of our geography. At nearly 26 weeks into my pregnancy, I did not face judgment, challenges or complications when it came to my healthcare and medical choices. I had the benefit of time, when many don’t.
Once again, we packed our bags and headed into a special maternity ward for parents who wouldn’t be bringing home a newborn (we would later find out that this is rare in most hospitals, and many people in our position would have to hear living babies cry).
We saw the same doctor who just a few weeks earlier had led us down a river of false hope. This time, there would be no second-guessing. The doctor administered the medication that would stop his heart, and it was at this moment that he was gone for me. I screamed and cried while my husband held me tightly. We would then go on to endure an intense 24-hour labor to meet our son, Baby V, stillborn.
The nurse placed his tiny body in the bassinet next to us. At first, we were scared to see him or hold him. I knew I wanted to hold him, but I was terrified about how it would make me feel. Would seeing him give me nightmares? Would it make me feel better or worse? Would I regret it if I didn’t hold him and say goodbye?
We decided to hold him, and for us, it turned out to be the best decision ever. Even though he was gone, those moments with him were precious. To be able to see him and not have to wonder what he would look like. I remember he had so much hair and a little unibrow, so bushy we joked that it looked like a mole. We were able to take photos with him and create these memories. The staff at the hospital created a box with little mementos for us to take home.
I think what a lot of people don’t understand about our loss, is that even though it was just over halfway into the pregnancy, I was still approaching the third trimester. I think that’s something a lot of our friends didn’t understand.
When someone dies or loses a loved one, you typically offer your condolences. But when we saw our friends afterward, a few of them didn’t know what to say, or said nothing at all. I don’t think they were doing it to hurt us; more likely it was an attempt to protect us. But it was hurtful in those moments to not have him acknowledged. He had little feet, hands, a nose, and long eyelashes just like his Daddy. Although they never saw him, he was real.
Where we live, it’s strongly encouraged to see a therapist following a medical termination. So I did – once. Looking back, I should have continued with the sessions. It’s strange to find yourself healing physically and emotionally from birth, with no baby to show for it.
After the recommended three-month wait, I was eager to try again. And so it was back to the tracking and ovulation tests. We conceived again quickly, but within a week I had miscarried. I was so angry.
You don’t ever want anyone to go through something like this, but I couldn’t help but think, “Why me? Why am I the chosen one?”
During my pregnancy with Baby V, I had connected over shared excitement with other women who were pregnant at the same time. But after losing our son, I no longer wanted to see or speak to them. I wanted to be happy for them, but I couldn’t help but think that was supposed to be me. I remember seeing someone I knew who was pregnant post on social media that she was struggling with morning sickness. Irrational anger burned as I thought to myself, at least you have a healthy pregnancy. I would give anything to be pregnant.
We did eventually become pregnant again, this time with my daughter Charlotte, my rainbow baby (a term often used to describe a baby born after miscarriage, stillbirth, or infant loss). The pregnancy was difficult. I wasn’t thinking “I’m going to have a baby.” Instead, I was mentally preparing myself for something bad to happen. I was supposed to be excited, but instead, I was terrified.
I went through my pregnancy in a sort of dissociative state, to the point where I often forgot I was even pregnant. I remember a time when I was at the store, and a woman came up to me and congratulated me, and all I thought was, “Did I win something?” But she was looking at my very round belly. In truth, Charlotte wasn’t real to me until she was in my arms. I held my breath until the day she was born.
Rainbow babies are often thought of as a joyous miracle; the rainbow after the storm. But it didn’t feel like that to me, probably because I hadn’t gotten the help that I needed.
When Charlotte was born, she was colic; she cried incessantly and wouldn’t settle. She had a dairy intolerance too, but it would take us some time before we would figure that out. The postpartum period was extremely difficult, and I found myself in a very dark place. I remember thinking, maybe if she didn’t cry so much, I would be happier. I felt an immense amount of guilt; I should feel thankful – but the truth was I was struggling.
It wasn’t until Charlotte was 10 months old that I finally went back to therapy. My therapist helped me figure out that I was dealing with postpartum depression. I thought I would never be able to have another baby, but through therapy I got to a place where I could be pregnant again, and our son, Maverick, was born.
To this day, I still struggle with the question, “How many children do you have?” Do I reply, “Two” to spare them the pain, at the expense of my own? We told people that we “lost” our baby. There are still many people in our lives that likely don’t know we had a medical termination.
I often think people will judge us, that they’ll say, “You didn’t lose your baby. You made the decision, it was your choice”. Yes, it was our choice. But it was a choice no one ever wants to make.
When Chrissy Teigen came out and said that the loss of her son was due to a medical termination, she received a lot of backlash from people who have no business judging her. While I’m not one to follow celebrity tabloids, when she shared that, I felt connected to her, and I felt relieved. No one can possibly understand what it’s like until you’ve gone through it yourself. And someone else was finally talking about it.
Throughout the whole experience, I sometimes struggled to speak to friends and family about what was going on. I didn’t think they could possibly understand. In the end, I found support speaking to other women, most of them strangers, who had experienced something similar. I felt like I couldn’t say anything wrong to them because they likely thought or felt the same things as I did at least once before. I’ll never forget the strength I found in speaking to people who understood what I was going through.
It’s been three years since we lost Baby V and our life is currently very busy with two children under two years old. I no longer think about the pain of losing him every day. But there are moments – this time of year being one such reminder. Sometimes I’m walking down the street, and I suddenly feel exactly how I felt when I left the hospital empty-handed on that one autumn day. It never leaves you, but it does get better.