5 Things I Wish I Would Have Known About My Child With Down Syndrome

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In our 19th year of marriage, we were blessed with a surprise within a surprise that would take our lives and our families on an amazing journey.

We struggled with infertility our entire marriage and went through surgical testing, blood work, pills and injectables from Italy to become pregnant. In our 8th year of marriage, we were blessed with twin boys!

My husband has six sisters and is the only surviving boy in his family. When he was in grade school, his mom gave birth to identical twin boys, but they passed away shortly after birth due to a congenital heart defect. The birth of our own twin boys was an extra special blessing for my husband and his parents after such a tragic loss.

Fast-forward 11 years. My cycles were long and heavy and in November of 2012, I was told I could have a hysterectomy. I didn’t even get to make the appointment as I found out I was pregnant that very same month!

Our 40s, 50s and 60s had just taken a turn in a whole new direction! It definitely wasn’t what we had planned, but after years of struggling to have children we felt so blessed.


When we told our boys, they were just as shocked! They were content with our little family of 4 and the easy routine we had fallen into.

With my ‘advanced maternal age,’ I had ultrasounds with almost every prenatal appointment. I opted out of any additional or invasive prenatal testing just as I had done with the boys. I didn’t want to put my pregnancies at risk and I knew I would carry the pregnancies to term no matter what.

Although I had been able to give birth naturally to our twins, this little one was breech, so I was scheduled for a C-section a few weeks before my 43rd birthday.

On August 7, 2013, the day before my scheduled date, we were blessed with a precious new baby! My family erupted into cheers in the waiting room upon hearing it was a girl.

When I first saw her, I knew something was different. They finally got me back to my room to recover, and my doctor and husband came in with solemn faces and told me they thought she may have Down syndrome.

As I recall this moment for all of you, I can still feel my jaw tighten and I have to fight back the tears. It was so unfair.  We are good people and we had waited so very long. My heart was shattered into a million pieces. She was mine and I loved her fiercely. I didn’t want anyone else to have her but I just couldn’t wrap my head around the injustice.

Our experience at the hospital was less than stellar. You would think in this modern era, the medical community would be more versed and tactful and educated when it comes to Down syndrome, but we experienced otherwise.  They were very somber and doom and gloom and did nothing to enlighten us or support us on this new journey.

In addition to having Down syndrome​, we also learned she had some congenital heart defects. Each of these diagnoses were delivered to us, scratched hurriedly on a piece of scrap paper in acronyms by the nurse on duty. The biggest shock was none of this appeared on any of the ultrasounds. The biggest blessing was I had been able to enjoy my entire final pregnancy with no added stress to our baby.

Once we left the hospital, we had an appointment with an amazing geneticist who shared from the heart all the good he had encountered over his long career and work with people with Down syndrome.  He was the light and hope in the darkness and he was right!

There’s so much more I could share about our amazing experiences over the past four years, but it would end up being a book! Instead, I will just make a few final points.

1)  Don’t be afraid of Down syndrome. These kids are bright and capable and AMAZING! Your heart will feel love and joy like nothing you have ever experienced. Our daughter loves books just like her brothers, she loves to play Legos just like her brothers and she loves to learn and play just like her brothers. We have raised her just as we raised them. Our expectations of her are no less and she has lived up to each one. It may take her a little longer to reach some milestones, but she gets there.

2)  If you have other children, they will experience the same joy. To see her brothers love on her as we love all of them is incredible. To hear them ask her for hugs and say, “I love you, Ava!” is a blessing beyond measure. Our entire family, extended family, friends, neighbors, acquaintances and even strangers are all smitten! She casts a light of joy everywhere she goes. Grant and Wyatt may have been happy with our family of 4 but these teenage boys will be the first to admit they can’t imagine our lives without her!

3)  Can kids with Down syndrome have some additional medical challenges? Yes. As I mentioned, Ava was born with congenital heart defects. She had her open heart surgery just over a year ago and is doing amazing.

4)  If you are hoping for the perfect child, there is no such thing. We are all imperfect in some way. Each of us has challenges, yet each of us also has amazing talents, gifts and purpose.

5)  Don’t let fear make your decisions. The unknown may seem scary but make that leap of faith and open yourself and your heart to the amazing possibilities life has to offer. It is such a precious gift that too many take too lightly.

My goal in sharing our journey is to give others hope and hopefully change hearts and minds along the way.


This story was written by Carrie Sears Kohles.