"There is no good option. My heart was going to be torn out of my chest no matter what happened"
My husband and I planned for her - she was talked about months before she was even conceived and we were aligned on how we’d parent, how we’d want her to value her family, how we’d deal with consequences and discipline, all in an effort to make her a wildly independent force to be reckoned with. We wanted our baby to grow to be confident in herself, to be independent, to make loyal friends, to fall head over heels in love, to experience heartbreak, to learn from her heartbreak, to surprise herself with her abilities, to work through challenges and self-doubt, to feel her blood pulsing in her veins, to party until the sun came up, to be open-minded and a critical thinker, to love openly and honestly, to play sports and to break bones, just as we both did in our childhood. We hoped that she’d find her own hobbies and passions outside of ours and teach us about them. We wanted her to have a full, challenging life.
Since she was conceived, I was told that my pregnancy with Grace was textbook. My blood pressure was low, my sugar levels were normal, and my ultrasounds showed that she had 2 arms, 2 legs, 10 fingers, and 10 toes, she was forming as expected and growing into the fierce little force we were dreaming of, but we couldn’t find her nasal bone. I went for 4 ultrasounds after the first anatomy scan proved that our little girl was stubbornly positioned so that we couldn’t see her nasal bone. I smirked to myself, thinking “I like that she knows what she likes - and apparently for some reason that’s a position that isn’t showing us her nasal bone”. I liked that she had a stubborn streak, I knew she got that honestly from both myself and her dad. I went for 3 other ultrasounds specifically to get her nasal bone - every single time she was positioned facing my back. On the fourth attempt, the doctor happened to be at the clinic at the time of my appointment and after getting an unclear reading from the ultrasound technician, she came in and actually turned our baby to get a clear reading. She then told me that she was happy with the reading - everything was back to being “textbook”.
In the meantime, my husband mentioned that he’d like to get the NIPT test completed, just to know for sure that she was growing as normal. I told him I was aligned with whatever he wanted for that test. I was confident she was our strong little healthy force, but if he felt more comfortable, we’d get the test done. In Canada, because I was determined as low risk (1 in 700, to be exact) for any genetic abnormalities, we would pay out of pocket to have the test done. We shipped my blood off on Dec. 21st and got the results back on January 2nd.
That’s when our world came crashing down. We learned that she had a 79% chance of having trisomy 21 (Down syndrome). We talked with our midwife who said that we still had options. We were referred to a genetic counseling clinic at a nearby hospital and we got an amniocentesis done which would be a diagnostic test, giving us a firm yes or no as to whether she had trisomy 21. We had the amnio on Jan. 9. Results on Jan. 11 showed that she was positive for trisomy 21. On January 20th we made the hardest decision to walk into a hospital to meet the one doctor in our area who would stop her heart. We then moved to a closer hospital to be induced.
Grace was born on January 23rd, 2023 at 12:53 am weighing 4 pounds and 1 ounce in Hamilton, Ontario, Canada. She was perfect.
My husband and I felt very clearly that having Down syndrome was not the life that we wanted for our baby. As testing progressed, we had one very experienced, knowledgeable doctor tell us that he “saw evidence of Down syndrome on her kidney” - when I desperately pushed to learn exactly what that meant he withdrew slightly, I think as a way to keep me calm. Grace would have needed more medical care than I felt fair for an infant. She’d likely need multiple surgeries in her childhood. She’d always be the exception at school or daycare. If she was lucky enough to have friends, I doubted that they’d be the loyal friends that we dreamed of for her. She’d never be fully independent. She may never have been able to go to the bathroom by herself. She’d never be financially independent. I feared that if she did fall in love, it’d be as a result of a cruel bet someone made, or that it wouldn’t ever be reciprocated in a way that was pure and innocent. When we revisited the list of hopes we had for our beautiful daughter, we quickly realized that we made the choice that was right for us and what we believed was right for her. We made the hardest decision we could ever make out of nothing but love for her. We didn’t want her to suffer. We didn’t want her to feel like an outsider because of things outside of her control. We didn’t want to poke her with needles and bring her for tests when we couldn’t explain why, or when she was too young to understand what was happening.
Being a TFMR mama is the hardest thing I’ve ever done, and I hope it’s the hardest thing I ever have to do. It’s not like we had a “good option” - I feel like our options were either door #1 of “absolute torture” and door #2 being “actual hell”. There is no good option. My heart was going to be torn out of my chest no matter what happened.
I took 6 weeks off of work. I cried, I bawled. My best friend asked if I was suicidal, I told her I wasn’t but part of me absolutely wanted to die so I could be with Grace. After staring at the walls for 6 weeks, not hearing what anyone said, not thinking of anything but my baby, I decided enough was enough and it was time to go back to work, have some distraction from the pain, and try to live life again. I was a shell of myself and I needed to get myself back. I didn’t know if I was ready or not. I didn’t know what to tell people. I didn’t know if it was a good idea. I just took it one day at a time and got frustrated one day and thought “I need to go back to work”, and so I did. I’ve always been a driven and career-minded woman, I hoped that this would help me define myself again, to me. So far, it has so I’m continuing with that until it doesn’t anymore.
I was really fortunate to live in a place where I had the option to terminate in my third trimester, as Grace was born at 31 weeks. I felt exceptionally fortunate to have extremely supportive medical care throughout this process, which I know is something that’s rare. Every nurse, midwife, doctor, and social worker knew that we desperately wanted our baby and they were sensitive in talking to us, understanding how raw these circumstances were. I was so thankful to have that experience.
I’ve been going for counseling with a therapist who had a TFMR herself, and who specialises in TFMR. I found a list online and luckily we clicked well. She’s been really helpful with helping me validate my feelings, how to work through intrusive thoughts, and how to get my body to sleep. I’ve been journaling and writing to Grace almost every day, telling her how much I love her, and how I hope she’s resting easy with her lineage of strong women who I hope are rocking her to sleep and soothing her while she waits for me.
I’ve never considered myself religious, but I have considered myself spiritual. Grace has made me so much more spiritual. I see cardinals when I go for walks and I say “Hi baby girl” to them. I visualise her in the arms of my grandmothers who have passed away, knowing how maternal they are and hoping they’re soothing her as she fusses. Initially, anytime I felt cold air (which is an easy thing to find in Canada in January and February) I thought it was her, forcing me to feel something - anything - that she could make me feel. I wanted windburn on my cheeks and for my fingers to go numb from the cold. I wanted to submerge myself into any sensation I could because I told myself that was her. And I still believe that’s her. She’s everywhere. She’s all around me, experiencing my day with me just as she did when she was inside me. She’ll always be a part of me, and I love her for that.
We made the hardest decision out of love for Grace and it broke me to make it. When I see people with Down syndrome going about their day I stop and watch them, wondering how their day is, who their friends are, how their families are. I think about Grace, I check in with her and hope that she understands why we made the decision we made.
When I was holding her, I told my husband that Grace has to do 2 things for us - she has to force us to live more vibrantly, and she has to bring us closer together. It’s been a lot of work, there’s been times when I’ve wanted to sob alone, I’ve wanted to scream by myself, I’ve wanted to punch his chest and force him to leave me alone, but he keeps reminding me of how we promised that Grace would bring us closer together, and because we’ve focused on that, she has. We talk about her often, and we have dark humour and make jokes, but we can only do that because we both went headfirst into the trauma together, even though I didn’t want to at the time, he reminded me of who I wanted to be in a very gentle way, which helped tremendously.
We also grieve differently. My husband needs more prodding to open up but I think he’s pushed himself to do that to help me. We’ve battled between wanting to talk to each other and keeping things private, not wanting to bring the other one down if they’re having a good moment or a good day. There’s no guidebook for this, it’s hopefully the hardest thing we’ll ever endure, but I’m so thankful that Grace brought us gratitude for each other and the people around us.
I’m about two and a half months out from my TFMR and I don’t know if I’m okay. I say I am, but if I actually think about it, how can I be? How can that be the assumption? Of course, I’m not. I’m not who I was. I’ll never see pregnancy the same way, I’ll never think that a positive pregnancy test means my baby is coming home and that their potential is limitless. I’ll always worry about our babies if we can even have another one if that one is healthy in utero if it is healthy once it’s born if it will be cognitively healthy, and on and on.
Despite talking about it in therapy I don’t know how to have those normal thoughts, it’s not in my makeup anymore. I was so relaxed in my first pregnancy with Grace and that was all turned upside down, it seems so impossible for me to be there again. I did everything right, everything in my control for my baby.. and it still didn’t work out. I’m petrified of getting pregnant again. I’m also petrified that I don’t get pregnant again and I never know the goodness of being a Mom. All of these thoughts swarm around when I’m alone and when I’m surrounded by people. I don’t yet have control over when they come and go, and sometimes I force them to be quiet and tell myself to be normal, that I’m in public, and that no one else knows what I’m thinking of. Then other times I think “I don’t care about anyone else '' and I cry in the middle of public transit. People look at me and I stare right back at them, daring them to ask me what’s wrong. I hope this goes away with time.
Grief is a sneaky bastard. Baby grief is the ultimate monster, proudly standing nearby on sunny days and family vacations just waiting to suck you in completely, and leave you as a sad, angry, sobbing mess.
With TFMRs, there is no right and wrong. There’s no clear line of what to do, how people should address you or your baby or partner, or if they should talk about it or not. Everyone is different and there is no formula to make the pain go away. I don’t know if I’m a mother, but I know I had a wonderful daughter. I know she mattered and that she was a perfect blend of me and my favourite person on the planet. I wish this didn’t exist. I wish we weren’t here, that we didn’t know what a TFMR was, or that we didn’t have to endure what we do and choose what we do, but finding the small, silver linings (or even the dull grey linings) is what keeps us going. We have to keep going for our babies, they deserve to watch us be the women they’re proud of until we can hold them again.
Sara A, TFMR Mama to Grace