Immediately after finding out we were referred by Dr. Schneider to the Down Syndrome Association of the Midsouth. He sent us there so that we could get educated and find some support groups and just talk to people with DS children. Forrest and I were both super happy about everything, and for me I didn't need any support groups. That was for people that were not ok with the results.......we were completely fine with everything......right?? I mean how bad could this be? Our child is just going to look different and it might take her a little longer to learn certain things, but I am going to be on top of it! I called the DS Association and spoke with Allison the Director. She was so very nice and told me about her daughter and their journey. I gave her our address so that she could mail us out some books to read and use to get prepared with. She even gave me her cell phone # and said for me to call her at anytime if I ever needed to talk. I thought that was very nice, but knew that I would probably never have to call her. I'm sure she was thinking that deep down I was not ok with everything.
We got books!!!! I called on a Tuesday and we got a package in the mail on Friday! I was so super excited to rip open that box, take out those books and start reading......or so I thought! I started reading stuff like "1 out of 691 births amount all races will be DS", "About 4000,000 Americans have DS", "The current life expectancy for people with DS is about 60." Not bad! Still excited!!! Then I got to chapter 2 and reality started to hit. Monitoring your pregnancy post-diagnosis was the title. This is when they started talking about needing extra ultrasound.....no big deal Forrest LOVES him some pictures! Next we will need to get a "fetal echocardiogram"......hmmm that sounds like something to do with the heart? Let me keep reading I'm sure it's something different.....WRONG! An estimated 40-60% of babies with Down Syndrome have some type of heart defect. The vast majority are correctable by cardiac catheterization or surgery, or resolve on their own or with medication. That's where I stopped. This test was to check the heart, because something could be wrong with her heart. That's a major organ. She can't live without a heart. I slowly started feeling myself start to panic. I started thinking "Ok Christy calm down and just flip the page." I flip the page and that's where the list of possible specialists were: Geneticist or Genetic Counselor, Perinatologist, Developmental pediatrician, Pediatric cardiologist, Gastrointestinal specialist, Lactation consultant.........now I'm in full on panic mode! The crying has started and I don't know if I can do this. I put the book down and try to forget about it, but that will be impossible. I fully understand now why everyone was trying to give me numbers to counselors....I NEED THEM!!! I called Dr. Schneider's office first thing Monday morning and had a complete melt down on the phone with him. He assured me everything was going to be fine and yes he called me in something to help with the anxiety. We were going to the doctor every 2 weeks and now we have to wait 4 weeks. What if something is wrong with her heart? These next 4 weeks will be the longest 4 weeks of my life!!!