We asked how this happened, knowing that we weren't carries of it, and this is how it was explained to us:
One of Jarrad's sperm or one of my eggs that had a "glitch" in it. When Jarrad's sperm and my eggs were being created, they were being produced in a "mass production line". While everything was "going through the line", there was a tiny glitch in one of the sperm or eggs while it was being created. They actually said that if it was early in the "production line", there could be 100 sperm or eggs that have this glitch. If it was later on in the "production line" there could have only been 1 egg or sperm that had the glitch.
Emmalin's geneticist, at the St. Louis Children's Hospital, told us that we have about a 3%-5% chance of having another baby with CDKL5 gene deficiency. I know these probably don't seem like very big numbers, considering everyone has like a 2% chance of something being wrong with their baby. But so far, we are 1 for 1, and so those are HUGE numbers to us!
We were also informed that there will never be a way to know if it was the egg or sperm that had this deficiency and how many eggs and/or sperm still have this deficiency (if any). We would just have to take our chances and wait until I got pregnant to test the baby. If I got pregnant, there are three different ways that they can test the baby to see if it had the gene deficiency. Two ways are done by tests performed during pregnancy at 12 and 16 weeks. The third option would be to do in vetro fertilization. When the cells multiply to 4, the doctor would take out one of them out and test it.
So, those are our options. Honestly if I got pregnant, and we found out that the baby had the CDKL5 gene deficiency, aborting it would not even be a consideration. And if that baby had the deficiency, Jarrad and I wouldn't be able to live with ourselves, knowing that we intentionally brought another baby into this world, already aware of the fact that it had a chance of being created with CDKL5 gene deficiency. We feel like it would be a VERY selfish act on our part and we don't think living with the CDKL5 gene deficiency is a life that any child deserves! Now, saying this, please know that we love Emmalin with ALL OF OUR HEARTS, we are SO grateful to have her and we think that she is perfect in every way! But when it comes to having another baby, and with all of the information that we have been given, it is a risk that we are willing to take. I guess we could change our minds later, but right now, this is how we feel.
God is good!
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