W E WOULDN’ T CHANGE A T HING, NOT EVEN ONE CHROMOSOME’

Omaha toddler with Down syndrome now ‘thriving’ with help from Early Development Network

BY KIERSTIN MERGENS, MA , L AT, ATC SPECIAL FOR EARLY DEVELOPMENT NETWORK

“You were the one that gave birth at the school,” the reception nurse said as I was trying to find my newbor n girl at Methodist Women’s Hospital.

Yes, indeed I was.

In October 2020, I got a phone call from that same hospital that would change the trajectory of my life. My OB said my anatomy ultrasound a few days prior showed some fluid around our baby girl’s kidneys, and she showed signs of a flat nasal bone.

At our perinatologist appointment the next day, we were told she had five total soft markers for Down syndrome.

I cried, my husband cried, and even the perinatologist cried with us and hugged me in the middle of a pandemic. He said something I’ll never forget: “It’s OK to cry, it’s OK to feel all the feelings, and it’s OK to grieve the death of the baby you thought you were having.” I spent the next four months getting my hands and eyes on every resource I could find.

On Feb. 11, 2021, I texted my husband and said I felt a weird tingle in my side. I was at Elkhor n High School, where I’m the athletic trainer Forty minutes later, we were holding Breckyn LeighAnn, having just delivered her on the floor of the faculty locker room.

EMS then took us to the Women’s Hospital emergency room. Breckyn was taken to the NICU after getting an initial green light, while I was taken to labor and delivery and then eventually to recovery

After all the craziness, I couldn’t sleep. At 2 a.m., I decided to go find my new baby girl. That was the first time I heard, “You were the one that gave birth at the school,” and it certainly would not be the last.

Breckyn was in the NICU for eight days for oxygen and feeding issues.

She was hospitalized five times in her first year, including open-heart surgery, and twice in the last year, including tethered spinal cord surgery

We were overwhelmed by all the great infor mation and resources given to us by the hospital. One of those resources was the Early Development Network. Breckyn started receiving services from them at around 2 months old.

We have an awesome early intervention team our services coordinator is the best! She helped us get Breck on Medicaid, the aged and disabled waiver, and any other service or resource she thinks we’d benefit from having.

Two years later, she still receives physical therapy, occupational therapy and speech therapy She also has an Early Childhood Special Education teacher, as well as services coordination.

Thankfully, she’s been thriving and hasn’t been hospitalized for illness in over a year She loves being in the water, playing outside with her 4-yearold sister, going on family outings in her cool wagon, eating anything and everything, reading books, and coloring.

I did grieve the death of the neurotypical child we were expecting. Then I prepared to have a child with special needs. Breckyn is the happiest, sweetest with a pinch of sass baby girl who is the light of our lives and brings a smile to the face of everyone she meets. We love our little family so much and wouldn’t change a thing, not even one chromosome.

It is never too early to ask questions about your child’s development. Take advantage of free early intervention services through your school district. Call 402-597-4936 or visit our website at omahaedn.esu3.org.