The following week, our wonderful, caring, and loving Perinatologist told us that we had one very healthy baby boy. But that “Baby B”, who she suspected was a girl but couldn’t confirm, was missing at least one kidney and probably a bladder. This meant that she couldn’t make her own amniotic fluid, and that she wouldn’t develop lungs past 20 weeks. This diagnosis is referred to as Potter’s Syndrome. I heard what she said, but I just couldn’t comprehend it… were we losing both babies? Could they/she still have a chance? What would happen to our son if our daughter died? It was incomprehensible.
We spent three weeks agonizing over what may happen. We had to tell our friends and family about the babies- everyone was walking on eggshells every day. My Perinatologist had a large degree of confidence that regardless of what happened to our daughter, our son had a very good chance of being carried to term.
At a follow-up appointment during week 23, it got worse…. My cervix had shortened considerably and my babies were both at risk. I was checked directly into the hospital and had to lay at an inverted slant to take the pressure off my cervix. I couldn’t believe that just two hours before I was at work and going about my normal life. My doctor performed a cerclage to stitch my cervix closed, which turned out to be much harder than she had expected. But it was in place, and we were all determined to keep it that way. She always called me her “1% patient”- only 1% ever have a baby with Potter’s Syndrome, only 1% of those cases are with twins where only one is affected, only 1% ever need a cerclage… and on and on.
I spent the next several weeks in the hospital on strict bed rest counting the days. I knew that every day the babies were inside after 24 weeks, that they had a chance. I was still holding out hope for my daughter. Our motto became “no regrets”- do everything that we could with our babies while we had them. We read to them, I kept a journal with all of the things I wanted them to experience in life, we played music, my husband played guitar. Since I was on strict bed rest even after being discharged from the hospital, I couldn’t do a lot. But what I could do was focus all of my energy on my babies. The reality of the situation helped me to shift my focus from grief over my daughter to determination and hope for my son.
The days turned into weeks, and the weeks into months… both of our babies continued to grow. Our son, who we named Alexander, was thriving. Our daughter, who we named Nadia (which means “hope” in Russian), was alive but her situation had not changed. I continued to focus on giving them the best chance I possibly could at life.
At our 37-week check-up, Nadia didn’t have a heartbeat. I had been pre-scheduled for an induction a few days later, but they moved it up at our request. 48 hours later, after a long and grueling vaginal birth, our babies came in to the world. Alex was first, a little over 7 lbs and 19 inches long. He turned one year old today and is the absolute light of our lives. Nadia followed a few minutes later. She was 3.5 lbs and 17 inches long. We held her, and touched her, and told her that we loved her. We had a photographer from Now I Lay Me Down To Sleep come to the hospital to take pictures of them both.
Nadia should have been here today with us for her one year birthday. She and her brother should have celebrated together. Only time will tell how much of a feeling of loss he will feel growing up without her. We intend to make sure he knows that she was part of him and helped him to live. There will never be a birthday, holiday, or even just a Monday that will go by when we don’t miss her and grieve for our loss. But knowing that we would probably lose her ahead of time allowed us to do what we wanted to with the time we had together. I will forever be grateful for the joy that she brought to all of our lives.