Prior to Leah’s diagnosis she was seen every 3 months at Children’s Neurodevelopmental Department where they would track her development and tried to help us figure out what was going on with Leah. They decided to do a chromosome SNP array which is a genetic test that can detect changes in a person’s chromosomes. They already had her blood banked because they tested her for Fragile X syndrome which she did not have. So, they thought it was best to do the SNP array as well as a chromosome analysis.
After they gathered all of the results, they had Alex and I schedule a genetic counseling appointment. They nicely explained to us that they found a rare duplication in one of Leah’s chromosomes. I honestly cannot remember which chromosome it was, but they told us they cannot give us much information as it is extremely rare, but it is linked to developmental disability.
But the most important thing that came out of the genetic counseling appointment was that they asked if we were planning to have other children in the future. At that time, I could not think about having another child because of all the things that were going on with Leah. But they told us that if we ever planned on having any other children that they would recommend us to let them know so they can run more tests as there was an exceedingly small percentage that we would not have a child without a severe disability.
When you hear that your world is shook a little bit because during this time Alex and I were constantly asked if we were going to have more children. We always redirected these conversations as we did not discuss our struggles and we did not want to explain to others that was put onto our plates. Underneath was the truth is we did not want to bring another child into the world as we already knew the struggles and barriers that were faced for our Leah.
As we made a commitment to each other that we would do whatever it takes to get the proper care and treatment for our daughter we never talked about having more children as we both left that genetic counseling appointment knowing that our Leah is just what we needed.
As for at that time we did not realize the financial costs that goes into raising a child with a disability but that will be a topic for another day.
