My Own Words: Mom Shares Thoughts on Daughter’s Down Syndrome, Heart Defects

You see, when I found out I was pregnant again, I imagined the experience would be like it was with my 3-year-old son Jack: I got pregnant, gave birth, took him home and lived happily ever after. My husband Ben and I learned…to our shock and heartbreak…it doesn't always happen that way.

In late December 2018, I began having problems with my pregnancy. Ben and I visited my doctor, who hooked me up to a heart monitor. We remembered how Jack's heart had sounded during a similar test before he was born.

We both knew immediately that something was wrong. The following week, an ultrasound confirmed our fears--;there were problems with Ellie's heart. The doctor also told us our baby had a greater than 80 percent chance of having Down syndrome.

We were shocked. The heart problems sounded so scary. And I didn't know anything about Down syndrome. As a mom, you hold out hope that everything will be the way you imagine for your sweet baby girl. 

My doctor referred us to the wonderful heart team at Arkansas Children's Hospital. They were honest with us from the beginning, and they quickly came up with a plan for Ellie's care.

I visited the heart clinic several times throughout the next few months. My regular doctor would deliver my baby, but as soon as Ellie was born, they would transfer her to the cardiovascular intensive care unit at ACH.

Finally, our beautiful, perfect daughter arrived. Ellie was born with Down Syndrome and two severe heart defects. She was immediately rushed to ACH, just a few miles away. After three days in the hospital, I was finally able to join Ellie and Ben.

When I arrived at the CVICU the first time, I was nervous and scared. As a mom, I worried I wouldn't know how to hold my very sick baby. I thought, "I can't fall apart. I'm her mom. I should know how to do this." But the nurse, Nicole, bustled around arranging everything for me. She never treated me like I should know how to handle a baby with tubes and wires and monitors everywhere.

Before I knew it, I was sitting in a chair holding Ellie for the first time.

At just six days old, my tiny baby had surgery on her heart to repair one of the defects. Watching the doctors wheel her away to surgery was so strange. We were exhausted with worry and fear.

But I also felt comfortable with the  ACH heart surgery team and what they were doing. It was like being with family…they had her best interest at heart. I knew they would do everything they could. They wanted Ellie to go home as much as we did.

Thankfully, the surgery was a success, but it was a grueling two months later before we took her home for the first time. She didn't know how to suck on a bottle, so she had a feeding tube. But because of the help of the staff at Arkansas Children's, we felt prepared to take care of our baby.

At six months old, Ellie had open-heart surgery to repair the second heart defect. Even though this surgery was also a success, Ellie's not out of the woods yet. She will probably need at least one additional surgery as she grows to replace valves in her heart that aren't working correctly. But I feel better knowing, Arkansas Children's will always be there for Ellie.

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