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Unexpected journey begins after newborn daughter is diagnosed with Down syndrome and heart defect

Harper Grace Cunningham was born on March 3 at 1 p.m.

Harper Grace Cunningham was born on March 3 at 1 p.m.

As March 3 quickly approached, I prepared my 1st grade classroom at Walker Elementary School in Canton for my long-term substitute. My husband, Aaron, a sergeant in the Ohio National Guard, prepared his tasks for the 2 weeks he’d be out. My 2-year-old son, Landon, and 8-year-old stepdaughter, Kaitlyn, ran around with excitement as the arrival of their little sister grew closer.

When the day arrived, Aaron and I drove to Aultman Hospital, where I was scheduled for a C-section at 11 a.m.

The doctors in Labor and Delivery were running behind. I waited an extra 2 hours to head back to the delivery room. I was excited and nervous all at the same time. I had a C-section with Landon so I knew what to expect, but yet, wanted my little girl to get here soon.

When we finally headed back, everything was going according to plan. And then it wasn’t.

While in the NICU, Harper crushed milestones and was able to come home after 5 days.

While in the NICU, Harper crushed milestones and was able to come home after 5 days.

I knew something was wrong when I heard the doctor call for a neonatal intensive care unit (NICU) doctor. They didn’t let me see her like they did with Landon.

In the recovery room, my OB doctor, the NICU doctor and nurse came in. The NICU doctor asked Aaron to put his phone down so he could listen. Everything that followed is somewhat a blur.

Something was wrong.

Our baby girl, Harper Grace, was born with signs of Down syndrome. She had a heart murmur and needed to head straight to the NICU for an echocardiogram.

Before she left, I got to see her for 2 minutes. The nurse laid her next to my head and we snuggled.

Then they took her away. And that’s when it hit me.

I was expecting Harper to have to spend a few hours in the NICU to regulate her blood sugar because I had gestational diabetes. Neither one of us were expecting this.

No parent wants their child to be treated differently. No parent wants their child to have to go through difficult times. We cried briefly until we realized that typical kids face hard times, too. Harper is not different than any other kid.

While Harper was under the blue lights, Aaron joked that she was auditioning for Blue Man Group. After passing through a few connections, we received the bottom picture the real Blue Man Group.

While Harper was under the blue lights, Aaron joked that she was auditioning for Blue Man Group. After passing through a few connections, we received the bottom picture the real Blue Man Group.

Harper spent 5 days in the NICU. She was born on Monday and was expected to be discharged with me on Thursday because she was such a happy, little eater and was keeping her oxygen levels normal.

Unfortunately, on Thursday she had high bilirubin levels and needed to spend 24 hours under the blue lights. It was extremely hard to go home without her, but it wasn’t for long.

Harper was allowed to go home the following day on Friday and I immediately began making calls to the doctors at Akron Children’s Hospital.

There is a long road ahead of Harper, but I know that my beautiful little girl is one tough fighter. I cannot wait to see her tackle whatever the world throws at her and am grateful she will have the opportunity.

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tonyacunningham@chmca.org' About Tonya Cunningham - Mom Blogger

Tonya Cunningham lives in Green, Ohio, with her husband, Aaron, and children, Kaitlyn, Landon and Harper. She is a first-grade teacher at Walker Elementary School in Canton. Tonya shares her experiences of overcoming the odds in her “Ups and Downs with Harper” blog, after receiving the surprise of a Down syndrome and heart defect diagnoses at birth.

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  1. Rellacyndi@msn.com' barb Wolfe says:

    Tonya a great article you rode about your precious little angel. You are in my heart and thoughts.

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