Caleb's Story

Approximately 50%+ of children born with Down syndrome will have heart conditions; many will have corrective surgery. It’s helped to bring the life expectancy for people with Ds from the mid-twenties to the 60’s & up!

The week Caleb was born, we not only got the “potential Down syndrome” news, but also news that he had two heart defects. I can tell you honestly that the heart conditions, and the thought of surgery, frightened me much more than the suspicion that he had Ds.

I still remember cradling my 5-day-old baby as we entered the cardiologist office.

My world was spinning at that point; I was just trying to hold on.

We were ushered back to the exam room. The ultrasound tech scanned his heart quietly, and I eyed her to see any reaction, knowing she couldn’t tell us much.

He explained that Caleb had what was called an ASD (Atrial Septal Defect), & a VSD (Ventricular Septal Defect). Neither was uncommon in children with Down syndrome (we had not gotten test results back yet, but another sign).

Basically, his heart had some holes – in the upper and lower chambers. He was concerned about them, and we discussed the possibility of surgery.

Many of our friends have felt what I felt at that moment.

I was terrified.

I broke down in the parking lot.

It was a quiet ride home as we both tried to digest everything.

Ten years later:

We still have a standing date with Dr. Joyce. Our story turned out to be an easier one than we expected that March morning, and certainly easier than some friends, who’ve had to hand their babies over for heart surgery. 

Caleb’s ASD closed on it’s own; his VSD is still there.

Hopeful surgery never happens for this.