October of 2016 I miscarried my 5 week pregnancy. I understand that many people don’t consider 5 weeks an actual human, but I do. I was devastated. I wanted that baby more than anything. I named him/her “Riley”.
I got pregnant again right away. By Thanksgiving I was pregnant and everything was going well. I was sick as a dog with morning sickness, but everyone told me that just meant I had a healthy baby. My bad luck had already passed miscarrying Riley, so everything was going to be fine. All the ultrasounds were great, she was a little jumping bean. I started showing really quick. Everyone told me she would be a big baby. I knew she was a girl. Somehow, I just knew. My stubborn husband kept holding out hope she was a boy.
About a week before the gender scan I kept having nightmares that my baby had a heart problem. I reassured myself that nothing was wrong, no heart conditions ran in either my husband’s or my family.
We discovered my beautiful daughter Nyla Rose had a serious heart condition at the 20 week anatomy/gender ultrasound. The condition was hyperplastic left heart syndrome. I’ll never get those words out of my head. In lay terms, she had half a heart–the other side did not develop. It’s actually not considered fatal. It would just involve countless hospitalizations, surgeries, and an eventual heart transplant..if she made it that far. They couldn’t even say with confidence to me that she would survive the rest of the pregnancy. Her aorta and flaps had complications on top of the syndrome.
They were telling me that she would be blue in the face for a year or so until her lungs caught up, she would have some sort of developmental or learning disability. Her immune system would be shot. She would spend her childhood in and out of the hospital with surgeries, therapy, and every time she got sniffles. If her condition deteriorated then there would be nothing to do even if she survived to full term. Surgery wouldn’t be an option. She would be put on comfort care when she was born (if she survived the actual birth itself). If she did survive, and her condition was stable, her first surgery would be a week after she was born. There was a 20 % chance she would survive that. Then more surgeries would follow in the next 5 years if she was still living. Her percentage of survival only went up 10% every time. This was all just buying time till she could withstand a heart transplant.
My husband and I made the hardest decision of our entire lives. We let her go. In medical terms, we had an abortion. That is such a cold, harsh word, and I refuse to use it. It makes it sound like I didn’t want her. That she was an inconvenience, or too much work. NO. We let our daughter go to heaven. I went into the hospital, was induced, went through labor, and gave birth to her. She was beautiful. Fully developed outwardly. She had big feet like me, and a big forehead like my husband. She had eyelashes and fingernails. We held her, bathed her, dressed her. His family came and saw her, took pictures with her. I held her little lifeless body all night, sobbing. In the morning, we had her cremated, and her ashes are in a necklace that I wear around my neck everyday. I spent the next week sobbing and wondering why I bothered to stay alive.
That was a year ago. I went to therapy, got back on my antidepressants, got a new job, moved, and went forward with my life. I drank myself under the table most of the summer. It was easier that way. I didn’t have to think about how I was supposed to be carrying around a little girl, breastfeeding, snuggling. I drank myself through her first Halloween, Thanksgiving, Christmas. It wasn’t easy. It took a lot of therapy and work to be able to live again.
My heart goes out to all the other lonely mamas out there ❤