World Down Syndrome Day: Celebrating their quality of life and what Down children bring to us

Posted by Kelly Follett, MD and Linda Watt RN, MSN, CCM on March 19, 2021 at 8:41 AM

Down Blog

ProgenyHealth joins the United Nations and other organizations to promote, improve, and celebrate the quality of life of Down syndrome individuals.

Birth defects occur in nearly one in 20 pregnancies, ranging from minor physical abnormalities to extensive disabilities. A number of these issue are chromosomal in nature, relating to the 23 pairs of chromosomes all human beings possess. One of the most common congenital disabilities, Down syndrome, which occurs when a fetus develops with an extra chromosome-21, affects approximately 6,000 US births annually – about one in every 700 live births. That rate has grown 30% since 1979.[1]

Persons with Down syndrome have experienced dramatic increases in life expectancy over the past few decades – from 25 years in 1983 to 60 years today.[2] Improved screening, better access to medical care, surgical treatment for congenital heart defects, and greater societal acceptance contribute to living longer. Down syndrome children who were once institutionalized are now embraced into loving homes with more educational options and recognition, including the Special Olympics.

Even with these advances, an infant born with Down syndrome faces a rocky start – often requiring several days in the NICU. In one study, 31% of infants with low oxygen and congenital heart defects ended up in the NICU.[3]

One mother shared her experience on the Akron’s Children Hospital blog:[4]

"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 as they did with my other son.

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

Something was wrong. Our baby girl 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."

When Cortney Warren had Lucas, the first Down syndrome child to become a Gerber baby, she was not thinking of her child’s big photo moment. She shared her story with the Denver Channel:

"Like every new mother, I was overcome by joy, and fear, after giving birth. I couldn’t stop smiling. I also remember thinking, “What do I do now? How will I protect this child for a lifetime?”

My husband Jason and I did not know Lucas would have Down syndrome until he was born, and we didn’t know what to do. We were shocked and scared. We were both confused. We didn’t know where we were even supposed to start. That’s when the NICU nurse, who has a stepson with Down syndrome, gave us the advice we live by.

“Always treat Lucas like a typical child,” she said. “Always ask yourself, ‘am I sheltering him because he’s a baby, or because he has Down syndrome? And if it’s the second one, don’t shelter him. Push him out there.”[5]

ProgenyHealth recently managed another infant with Down syndrome, a congenital heart defect, and feeding difficulties. Over the first few months, the infant required cardiac surgery, a nasal feeding tube, and a surgical tube into the stomach for feeds.

While caring for an infant with Down syndrome is challenging for any new mother, this mom also faced several Social Determinants of Health issues – financial, education, transportation, food, and language.

ProgenyHealth arranged transportation, food stamps, delivery of formula, feeding supplies, and baby supplies. With ProgenyHealth’s case management and a network of support, self-sufficiency was achieved. The mom went back to work, the grandmother took over daycare, and the infant progressed toward his developmental milestones. Ultimately, the baby reached a healthy 21 pounds, started to talk, stood while holding furniture, and clapped his hands – despite the challenges the infant faced early on.

From the moment of birth, an infant with Down syndrome initiates a team response – from doctors and nurses to caregivers and ProgenyHealth case managers. In celebration of World Down syndrome Day, we want everyone to recognize that every newborn requires “a village” – a team effort that reaps a life of love.

The Akron mother stated it best:

"[My daughter] spent five days in the NICU…. There is a long road ahead for her, 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."

 

[1] https://www.cdc.gov/ncbddd/birthdefects/downsyndrome/data.html

[2] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4445685/

[3] https://www.jpeds.com/article/S0022-3476(17)31300-8/fulltext

[4] https://inside.akronchildrens.org/2014/03/21/unexpected-journey-begins-after-newborn-daughter-is-diagnosed-with-down-syndrome-and-a-heart-defect/

[5] https://www.thedenverchannel.com/news/national/submit-your-childs-photo-for-their-chance-to-become-gerbers-next-spokesbaby

Topics: case management, social determinants of health, value of expertise

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