TFMR-Termination for medical reasons T21 diagnosis with a severe heart defect

Dedicated to Sweet Baby Madelyn Rose on her due date June 14, 2023

My husband and I were in the midst of wedding and honeymoon planning. It was the greatest time of our lives. Our honeymoon plans fell through but we had made alternate plans and they ended up being perfect. We had discussed that after the wedding/during our honeymoon we would throw caution to the wind and enjoy ourselves. We both had said, "If it happens, it happens." Well, I was around 2 days late for my period but wasn't thinking much of it. I always give myself a few days leeway before starting to panic. We had just moved into our first home and my mom was helping me organize and put stuff away. We were joking around when she whacked me on my stomach and instantly it made me super nauseous. I waited for her to leave to take a pregnancy test and it was positive. I froze and slightly panicked. I took 3 more and they were all positive. My husband and I always joked that we didn't think we were fertile and I never expected to get pregnant right away especially As we knew it takes many people months if not years to successfully get pregnant. I told my husband when he got home the following weekend (he works out of town during the week) and he was so teary-eyed and happy. It was our/my first pregnancy. We were thrilled. We set up a photographer to take some pregnancy announcement pictures in early December. I had my NIPT taken in late November around 11 weeks pregnant. We went and took our announcement pictures on a Saturday. That following Monday during my lunch break, my midwife called about the NIPT results. She had informed us that I was flagged as high risk with a PPV of 95% for Trisomy 21. She assured me that these tests are just screening and have been wrong in the past. She referred us to the MFM for an amniocentesis and anatomy scan. That evening, the same day as we got the call from the midwife regarding the NIPT results, the photographer sent us our announcement pictures. I was shattered. I couldn't even look at the stunning pictures. After a few days, I got myself together and started digging and doing research. Turns out that for T21 those screening tests are extremely accurate. I was broken. Why did she make me feel like nothing was wrong? I only had a 5% chance that everything would be okay and she made it seem like it was nothing. They never told me about any other testing available such as CVS sampling or NT scans. I looked it all up on my own but by the time I got all this information it was too late and I had no choice but to wait 5 more weeks to do the amniocentesis and anatomy scan.

Obviously, those weeks were hell on Earth. I tried my best to be positive and read as many false positive stories as I could find. We went into the MFM appointment hopeful that everything was fine and it was all a mistake. Nope. Baby Madelyn Rose had a severe heart defect, fluid around the brain, fluid around the neck, and a poorly developed nasal bone. CRUSHED. The doctor said that her heart defect was the worst of it all. At almost 17 weeks he said she already was going to need open heart surgery but the defect could continue to worsen as the pregnancy progressed and we may end up losing the baby in the end. He said if we continued the pregnancy we would have to be monitored closely. They did the amnio and given what we learned during the ultrasound, we already knew it was going to come back positive for T21. Which it did.

We went home and after some processing time, we decided that we did not want our little girl to live a life of suffering. We did not want her to be in and out of hospitals her entire life, needing repeat surgeries and therapies. We decided to terminate. Our State has A.) strict abortion laws (I live in Wyoming, USA) and B.) poor health care. The MFM recommended a doctor in Denver, USA (around a 6-hour drive for us). Our appointment was set for 2 weeks after the MFM. It was a two-day procedure (January 19 & 20, 2023) because of how far along I was. By the time the TFMR appointment came, I was 19 weeks. I REFUSED to let my husband into the room during any procedure. Not that I didn't want his support but I didn't want both of us to be traumatized. This pregnancy and experience were traumatizing enough. I thought I would take the heavier load of the burden, I could do at least that for him, after all, he was being so extremely supportive and wonderful. They gave me antibiotics and something else (everything was such a blur). Then she gave me an ultrasound to take measurements. She was kind enough to not show me the screen. Then they started the laminaria insertion and started with medicine that was supposed to numb my cervix. I don't think it did anything but sting. The laminaria went in and WOW did that hurt. It was horrible for me and I was a complete sobbing mess. When they finished, they asked me if I wanted my husband to come back into the room and I said I needed a few minutes to calm down. I didn't want him to see how much of a complete mess I was. They left the room and left me there alone. I was laying down trying to get my breathing under control when the room started to spin and intense nausea hit me like a wave. I rolled off the table and tried to make it to the garbage can. I ended up puking in my facemask a bit. As I was puking, there was a gush and blood started running down my leg and onto the floor. At this point, there was still NO ONE in the room with me. I stumbled over to the door and was yelling for a nurse or someone to help me. They came back and laid me down and checked everything out. Thankfully, I was fine. My husband came back and we sat there together for a bit before I was finally able to calm down enough to leave.

We went back to the hotel and I woke up the next morning in so much pain. I was so sick, with nausea and diarrhea all morning. I took a shower and hoped it would ease my back pain and cramping, but then I felt stuck in there. My husband had to peel me off the shower floor and help get me ready to go back to the doctor. Day 2 was the d&c procedure. They walked me back to the procedure room and explained everything. They asked me what level of drugs I wanted. I could have simple OTC (Tylenol), oral pain meds, or IV pain meds. I told them to drug me as much as they could (IV drugs). They call this "conscious sedation". After the drugs were administered, I don't remember much. I had earbuds in so I couldn't hear anything. I only remember once during the procedure that I was groaning in pain but I don't actually remember the pain itself. Once they were finished, I was still out of it. The next thing I remember was my husband walking into the room and coming to my bedside. After we left there, we had to go to the funeral home and sign that paperwork. We decided to have our little girl cremated. We now have a little shelf in our living room that has her little footprints, her urn, and an ultrasound picture. I light a candle every night for my Madelyn Rose.

With Love, Madelyn Rose's Mommy