What have my wife and I learned after having a daughter with Down Syndrome?
We learned that there is nothing wrong with her, she is just the way God intended.
Now for all the negative stuff that we had to shrug off from the time we found out unitl now.
My wife received a phone call telling her that the AFP test she took was abnormal. We were told she showed signs of being at risk for delivering a child with DS. The only sure way to tell was to have an amnio, which we elected to do. We were’nt exactly practicing catholics at the time and we really wanted to know for sure. The amnio came back positive. After a couple of weeks to absorb what was happening, we decided to tell out friends and family to allow them to prepare as well.
Most of them were fine with it and offered their support. My wife found a local DS support group and started to attend meetings. But there was still negative things that happened. My own sister responded by asking why we were keeping the baby. She stated it would be unfair to bring a child into the world who would have to suffer throughout it’s life. She even went on to say, that it was God who gave us the technology to abort an unwanted child.
My wife was assigned to a high risk ob/gyn to follow her through the pregnancy. Our first visit went something like this; “Well I’ve looked at your chart, and it looks like from a legal standpoint you have just about two weeks to decied whether or not you are going to keep this baby or terminate the pregnancy. If you decide to terminate, no one will fault you. No one will blame you.” We were appalled at this horrible bedside manner, as it had already been clearly noted in her chart we were keeping the baby.
This same doctor gave us another possible way out when it was discovered our daughter had some “major” heart defects. He told us during an ultra sound that the babies Aorta was attached in the wrong place. My wife was given the opportunity to decide on fetal heart monitoring. If she chose not to have it, she could “Just let mother nature take it’s course”. Again the doctor commented that no one would fault her, in fact she could possibly mis-carry and then she wouldn’t even have to feel guilty. She was then scared with comments like, “If you decide to have the monitoring, and I see something is wrong, I am morally and legally obligated to intervene by doing an emergency c-section to deliver the child.” He actually used the word “morally”.
Well, we shrugged it all off and went forward. My wife deliverd a full term beautiful baby girl. After 6 days in the NICU, we took her home. After about four months, we both came to the conclusion that she was every bit as perfect as any other child. Our grieving ended right there. Sure, she has to have open heart surgery next year to repair several holes in her heart. But her Aorta is in the right place, and her heart condition is not emergent, and theoreticaly could be left alone with only a small risk of issues later in life.
So, 10 short months later, my wife tells me she is pregnant. I looked up and said, “Funny joke God.” Well, He wasn’t joking. The doctors of course recommended all sorts of genetic testing, so we could avoid another child with DS. We told them all to take a hike! We even opted not ot have the AFP test. Especially after we found out it had a 60% false positive rating. Can you imagine, 60% of the positive tests are wrong. It was after I found this out, I asked the genetic counselor how many women aborted based off the AFP test alone. The answer was an astounding 70-80%! Now my wife and I would never consent to another amnio, but just think of how many perfectly healthy babies are being aborted each and every day all because of an extremely faulty test!
As I said in the beginning, our little angel is perfect. She is just the way God intended her to be. And everytime my sister comes to visit, I hand our little angel over to her so she can hold her, and look into her little eyes. Needless to say, my sister wont say anything, but I can tell she has suffered over her comment, and she has changed for the better.
Naturally she refused and was actually told “You have quite a narrow minded view towards this, you should think twice about what you are doing to the children you already have” She has, she was raised with a handicap brother. She believes having him for a brother has actually enriched her life. We pray it never happens again of course, but if its in God’s plan, we all will accept God’s will.