When we first got married, we decided that we wanted to have a baby and I got pregnant within six months after our marriage. I had our first daughter, her name was Violet, in February of 2010. When she was six months old, she was diagnosed with a genetic disease called Spinal Muscular Atrophy. She passed away after a three-month hospital stay at Lehigh Valley Hospital in August of 2010.
We found out that we were both carriers for Spinal Muscular Atrophy. We needed RMA help us have another baby so we could use pre-implantation genetic diagnosis to determine if the embryo we retrieved would have Spinal Muscular Atrophy or not. It's all a personal choice. This is all kind of a radical situation to go through IVF. Not a lot of people approve of having a child in this way especially picking and choosing embryos, which would be best. But for us, we knew we wanted to have another baby.
We knew we wanted to be parents again. We couldn't think of us not being parents and Piper brought back a lot of joy into our life after our first daughter passed away. So, I'd say that if you're having a situation where you find out that you are a carrier for a disease like SMA, or even Cystic Fibrosis, or Tay-Sachs, then I think that this is definitely an option to explore so then you don't put a lot of heartache on yourself and your family. To lose a child is—it's the worst thing—we've ever been through.
We didn't tell a lot of our friends and family we were doing this. Just my parents knew and his parents knew. So we had support from our parents, but the office staff was very supportive. I remember calling Tara some days in tears—our nurse who would help us—and she always offered advice and comfort, and Doctor Schillings also. I remember crying to her in the office one day and, you know, she was there for me; she gave me a hug. When everything worked out, when we found out I was pregnant, I mean, it was just a very happy day.
Don't be afraid of IVF. Don't be afraid if you're choosing to do PGD or chrome testing. If you're a carrier for a genetic disease that's a terminal, fatal, genetic disease—like we are carriers of SMA. I mean, for me, physically it wasn't hard giving myself a shot a couple times a day, I got over it. I'm not a big needle person, but I did it. I don't do blood work very well; I was getting blood work every day. The emotional aspect is a little bit harder when things don't quite go your way, or how you expect them to go. But, I think that you deserve to be a parent. You deserve to have a child in your life…it's the most joyous thing in the World.