Saturday, March 14, 2009

Answers to some common questions

I wanted to write this post to answer a few common questions that people have asked us since Madi was born. I have been asked quite a few times if we had any idea when I was pregnant that Madi may have down syndrome. We chose not to have the prenatal blood test done which screens for chromosomal abnormalities. We made this decision as there are often false positives on this test and the only way to confirm if there is an abnormality (and it is still not 100% accurate) is by amniocentesis. I knew that I did not want an amniocentesis done as there is a small risk of miscarriage and we knew that no matter what, we would not terminate the pregnancy. At our 20 week ultrasound they did notice that Madi's kidneys had a slight elevated level of fluid in them and there was a tiny "light spot" on her heart. What that meant is that the tissue on that spot was a little thicker. Both of these are very common issues in healthy babies but both also happen to be very light markers for down syndrome. It was never really brought up that there was anything to worry about. I also did a ton of research and found that both issues are very common in babies without DS. I have a good friend whose daughter had the same issues on her ultrasound, she had an amnio done, and everything turned out normal. We also were told that the light spot is something that is more common in Asian people so we assumed since Madi is half Asian then that explained it. Since we are so young and had no family history of genetic abnormalities I didn't even think twice abbout it and continued to blissfully enjoy my pregnancy.

Many people also ask me if I regret not having the testing done and ask my opinion if I would recommend having the blood test done. This is a very difficult question for me to answer. I personally have no regrets and am glad that I did not know of her condition before she was born. I personally am not a fan of amnio's and the truth of the matter is that 92% of positive amnio tests (for down syndrome) result in termination. I was shocked at how high this number is and quite frankly it saddens me. That means that 9 out of 10 Madi's are not given a chance at life. 9 out of 10 families are never going to experience the extreme joy this loving baby brings to our lives everyday. Honestly, before Madi, the idea of having a baby born with down syndrome was so frightening to me. I have always had a special place in my heart for people with down syndrome but I never imagined having a child with the condition. Whenever I saw a family with a child with DS I would think "Wow, what an amazing family. I can't imagine having to go through that. They must be so strong." But the idea of being that family seemed so distant and the thought was so scary. Now, after having Madi for such a short time, I am not scared but am so hopeful for her and for our family. Some days I feel so lucky to have a "special" child that has opened my eyes and changed me in a way that I never thought possible. Other days, I am aware of the challenges that we are going to face and know that it is not always going to be easy...but ask any parent and I'm sure they feel the same way. Yes, we are going to have challenges. But what parent isn't? Although our challenges are going to be different who's to say they are going to be harder? I would not change who Madi is...she is perfect and is exactly the way God intended her to be. I know she was sent to us to change our perceptions, and she already has. I hope to also change poeple's perceptions on being a parent to a child with special needs. Yes, there were many tears shed when we first learned the news and I'm sure there will be more to come over the years. But, those tears are such a tiny, tiny fraction of the joy and happiness this little blessing has brought us. We are so happy and can't wait to watch our little girl grow and develop. I know she is going to continue to teach us so many important lessons in life.

Please know that Dave and I are both always willing to talk freely about our life and Madi's condition. If you or anyone you know has any questions or concerns, please feel free to contact us. I hope to one day be a resource for parents who have a prenatal diagnosis or a new baby born with down syndrome. I want to be there to tell is going to be okay. We love all of you and hope that life is smiling on you.


  1. Jen, this brought tears to my eyes. You and Dave are such amazing people. We are lucky to have you as friends and Madi is lucky to have you as parents. Thanks for sharing this post with us.

  2. It was so nice to see Madi and you guys this weekend. She's is changing so much alrady and is a bright and beautiful little girl! It is obvious to me that she would add all the joy and fulfillment to your lives as any other child would. Jeremy and I are lucky to have you as friends and cannot wait to see Madi as she grows up. She is so darling and all three of you are very fortunate to have one another.

  3. My name is Anne (Weber) Simmons and I stumbled upon your blog by way of another former Bellarmine student. I went to high school with Dave and I just wanted to say hello. I also wanted to let you know that this blog is such an encouragement. Your family is beautiful and your willingness to share so openly is rather refreshing. Thanks so much for allowing yourselves to be that support for other families. Who knows, maybe someday I'll be coming to you for advice and insight. :)

    May the Lord continue to bless your sweet little family! ;)