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Why Specialists Don't Know Everything About Down Syndrome

After Savannah’s checkup with her cardiologist today, I found myself reflecting on her open-heart surgery last summer and my heart is full of gratefulness and thankfulness.

There are some that do not want to look in the past. For me, certain things are hard to reflect on, yet the hardest times can teach us the most.

To think two and a half years ago I was told Savannah only had three out of the four chambers of her heart, that she had Down syndrome and that I had to make decisions and make them fast. Those “decisions” meant terminating Savannah. I was given every possible negative scenario and told every situation that could go wrong from any possible angle. I was even given a negative outlook on this sweet, beautiful little girl’s future!

Who can predict anyone’s future? Any child comes with obstacles and difficulties, correct? Do you love your child any less because they are failing math, need braces to correct their teeth, or aren’t good at football? Of course not! All of us have our obstacles and difficulties, some more than others. Honestly, the obstacles I see in any of my children makes me cheer for them even louder, do whatever I can to help them succeed and be the best they can be while encouraging them with so much love… because they’re worth it!

I believe God is good no matter the circumstance, no matter how muddy the water is I’m standing in, and no matter what statistics or what “specialists” tell us!

I personally know a couple of mommas and one daddy who contemplated terminating the pregnancy due to the bombardment of negativity and scare tactics they faced after their baby’s prenatal diagnosis.

There are countless pregnancies that have been terminated with this scenario. I do not judge anyone for a decision that has been made or contemplated. Judging another person isn’t my job and thankfully never my position.

However, I feel my job (and heart’s desire) is to encourage others and educate anyone who will listen: medical specialists are human and makes mistakes.

A “specialist” misdiagnosed Savannah’s heart diagnosis. Just an hour after I was pressured to terminate my pregnancy (by the one who gave the misdiagnosis), I was told by a prenatal cardiologist that Savannah actually did have all four chambers of her heart and she may need a surgery to repair it in the future.

Sharing our lives publicly as a living testimony is a way to show others that living with the beauty of Down syndrome isn’t scary. Listening to negative, inaccurate, and outdated statistics by someone who doesn’t even know a person with “designer genes” or any type of disability, however, is scary.

Down syndrome didn’t freeze my life; it did the exact opposite. Down Syndrome breathes life into my existence. It connects me with people across the globe. Down syndrome unites different races, genders and religions. I’m so proud God placed me on this journey. I’m so glad Fear was defeated (until it raises its ugly head and defeated again!) I’m so glad the doctors cannot even hear a murmur in Savannah’s heart and that open-heart surgery is in the “rear view mirror.”

In the meantime, I will keep looking ahead as I drive forward, only looking back to remember the grace given and wisdom learned while seeing the beauty of my future.


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