M
Monica1973
Guest
When my husband and I married 8 years ago we had planned on having children right away and then using NFP. When our first child, Sydney, was born she was unable to move, breathe, or swallow. Tests eventually concluded that she had a severe form of Myotonic Dystrophy which was inherited from me. No one in my family had ever heard of this disease before she was born and I had no idea that I have a very mild form of the disease. All of our children have a 50% chance of inheriting the disease.
After 5 long months in the NICU Sydney died in my arms after contracting pneumonia. During her hospital stay she underwent surgeries for a trache and g-tube and was dependent on a ventilator.
During these months I was understandably a wreck. A few months after Sydney died we started looking into PGD for having children that would not be affected by this horrible disease. Even though I knew this was against the teachings of the church, my desire for children was stronger and I felt like PGD was a “gift” that would allow us to have our own biological children. Gradually, my husband and I stopped attending church.
We became pregnant with twins using PGD/IVF. We were thrilled beyond belief until the doctor who did the genetic testing wanted to know when we would be having an amnio to “confirm” that our twins had not inherited the myotonic dystrophy gene. We did now want to do this but were pressured into it once we were reminded that we had signed an agreement to have prenatal testing done. Long story short, I was pregnant with a boy and a girl and despite the “gift” of PGD, our son did inherit the disease. Thankfully, it didn’t look like he had the severe form of the disease like Sydney had, but we wouldn’t know until he was born.
We were “offered” selective termination, which we quickly declined and were basically written off from the PGD clinic–I guess they considered our case a “failure.” My husband and I were scared but decided to accept this pregnancy as a sign and gift from God. Despite our best efforts (PGD) to make sure he wasn’t born, our son is here and we can’t imagine our lives without him and his twin sister.
Our twins are five years old now and both are very healthy, typical children. We don’t know what the future holds for our son, but for now everything is fine and we are grateful. The twins were baptized and we have started attending church again.
I have been on the pill since the twins were born. I know this against the teachings of the church but cannot risk having another child and having the child suffer like Sydney did. I never expected to be is this position. I am at a loss as to how I can deal with situation spritually.
After 5 long months in the NICU Sydney died in my arms after contracting pneumonia. During her hospital stay she underwent surgeries for a trache and g-tube and was dependent on a ventilator.
During these months I was understandably a wreck. A few months after Sydney died we started looking into PGD for having children that would not be affected by this horrible disease. Even though I knew this was against the teachings of the church, my desire for children was stronger and I felt like PGD was a “gift” that would allow us to have our own biological children. Gradually, my husband and I stopped attending church.
We became pregnant with twins using PGD/IVF. We were thrilled beyond belief until the doctor who did the genetic testing wanted to know when we would be having an amnio to “confirm” that our twins had not inherited the myotonic dystrophy gene. We did now want to do this but were pressured into it once we were reminded that we had signed an agreement to have prenatal testing done. Long story short, I was pregnant with a boy and a girl and despite the “gift” of PGD, our son did inherit the disease. Thankfully, it didn’t look like he had the severe form of the disease like Sydney had, but we wouldn’t know until he was born.
We were “offered” selective termination, which we quickly declined and were basically written off from the PGD clinic–I guess they considered our case a “failure.” My husband and I were scared but decided to accept this pregnancy as a sign and gift from God. Despite our best efforts (PGD) to make sure he wasn’t born, our son is here and we can’t imagine our lives without him and his twin sister.
Our twins are five years old now and both are very healthy, typical children. We don’t know what the future holds for our son, but for now everything is fine and we are grateful. The twins were baptized and we have started attending church again.
I have been on the pill since the twins were born. I know this against the teachings of the church but cannot risk having another child and having the child suffer like Sydney did. I never expected to be is this position. I am at a loss as to how I can deal with situation spritually.
