I finally heard from our genetics counselor today. After months of leaving her voice mails she called me today to tell me what the doctors had finally decided. She made sure to tell me that Avery's X-rays had been looked at by a few doctors all over the country and that they were going back and forth between two diagnosis but had finally agreed on one. Osteogenesis Imperfecta Type II. This is also known as brittle bone disease. Type I is not considered lethal, Type II is. This is a diagnosis that they had ruled out during my pregnancy because they had seen no obvious breaks in Avery's bones during any of our ultrasounds. They had noticed, however, that over time her bones became crooked and misshapen. The doctors decided on this diagnosis because in her X-rays they could see that her ribs looked like they had been broken and healed. She never gave me a name for the other possible diagnosis. All she said it was very rare and that most of what the doctors saw pointed toward the one that they had decided on.
So what does this mean for our future attempts at a family? Well we have been given no more than a 2 % chance that it will occur again. That is a little bit higher than I was hoping for but not as much as I was afraid of. I am only skeptical because we hit all the bad odd when pregnant with Avery, other than getting pregnant of course. The heterotopic pregnancy that was found at 11 weeks had about a 1% chance of happening. Avery's condition was also very rare and we just happened to hit that as well. I can't help but wonder what our next attempt would be like.
This is something that Skeet and I probably passed on to her but there is no way of testing us to check for sure because it can affect only one egg or one sperm. They could possibly test our embryos but it is a very complicated and extensive test and would most likely make it less likely that the In Vitro would work. The suggestion that we were given, if we choose to go ahead with the FET (frozen embryo transfer) is to get frequent scans throughout the first part of the pregnancy until the diagnosis can be given or ruled out. If we did go that route, the only purpose that the scans would serve for me is to give me peace of mind if the baby is healthy as early on as possible. If it does occur again we already know that we would not terminate the pregnancy, everything happens for a reason and if we were chosen to be the parents of two special angels then so be it. My only concern is whether or not I can take the chance, even if it is a very small one. The fact that there is any chance at all scares me to death. The only thing that I know I can do is pray. Pray that my Heavenly Father will guide me in the direction that He has planned for me. The He knows what is in store for us and that His will be done.
Skeet was surprisingly optimistic when I told him, I know that he has been scared so when he reacted so well it did help me a little bit. But I couldn't help but cry, I don't know if it was out of relief of finally having an answer or out of fear of what is to come, but I stopped at the cemetery, sat in front of Avery's grave and cried, harder than I have in a while. Then I came home and slept. I feel a little better now, but I still don't know what we are going to do other than once again, put all of our faith in the Lord and pray that he will guide us.
I am going to bed now, I hope you all have a great Memorial Day weekend.