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Emma Harms Photography
Penelope Potts, 4, stands with her mom and dad, Megan and Corey, and brother, Ryder, 11.

There’s nothing down about Down syndrome

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When Megan Potts of Grant was told the baby she was carrying had a one in 13 chance of having Down syndrome, the first option she was given was to terminate the pregnancy. 

Not considering that an option, Megan asked for the others. She and her husband Corey chose to have an ultrasound, where they discovered they were having a healthy, baby girl. However, the ultrasound indicated she could in fact have Down syndrome, so they scheduled an amniocentesis. 

They met with the amnio specialist, who asked the couple if it would matter to them if their baby girl had Down syndrome or if she didn’t. 

“I think we both remember that conversation like it was yesterday,” said Corey.

Megan recalls the doctor telling them, “It’s just like with any kid. You’re going to face obstacles and it’s all about parenting and expectations that you set. It’s no different with a kiddo with Down syndrome. You’re going to have the same expectations, that they do the best they can.” 

The couple chose not to do the risky amnio, and instead opted for a blood test, which came back positive for Down syndrome. 

At 17 weeks pregnant, Megan and Corey spent the rest of her pregnancy educating themselves on Down syndrome and connecting with other families through friends and social media. 

Penelope Jane Potts was born on March 10, 2014 in Omaha, weighing 5 pounds and 1 ounce and passing all pre-natal tests with flying colors. 

Megan said she feels very blessed they were able to discover Penelope had Down syndrome before she was born.

“I feel we were able to process everything, and when she was born we could really connect and bond,” she said.

Corey said when they look back, it upsets them that they got so worked up and stressed so much that they were going to have a child with Down syndrome. 

Megan agreed, “We couldn’t imagine her any other way. She’s just Penelope. She’s perfect as she is. She’s so much more like other kids than she is different.”

Megan said she thinks most people are just afraid of things they don’t understand. 

“It just makes me really sad to think of the amount of people who get a pregnancy diagnosis of Down syndrome and the first option they are given is to terminate the pregnancy,” she said.

The country of Iceland has a nearly 100 percent termination rate. On average, only two babies are born with Down syndrome in Iceland each year.

Although many health conditions can accompany Down syndrome, Penelope is a healthy, spunky, 4-year-old. Her low-muscle tone affects her swallowing and ability to recover quickly from sickness.

She gets annual blood tests to check her thyroid and white blood cell count, as children with Down syndrome have an increased risk of leukemia and thyroid conditions. She has also received two EKGs. 

A year-and-a-half ago, a swallow study found that Penelope was aspirating liquids. The first couple swallows of every drink she took would go into her lungs. The strange part was it wasn’t making her sick. The doctors called her a medical anomaly. 

After much research, the decision was made to insert a gastrostomy tube (G-tube) into Penelope’s stomach to deliver liquids. Today, she receives a total of 35 ounces of water five times a day. She still eats solid foods by mouth, and even points to her G-tube when she’s thirsty. She doesn’t get symptoms of thirst, such as dry mouth, because she’s always hydrated.

“It’s pretty convenient for medicine, too. She can’t spit it out,” her dad laughed.

A recent swallow study showed that Penelope is not aspirating as much as she previously was, so the hope is her throat muscles will grow stronger and the G-tube will eventually be removed.

“I think with every kid there are a lot of hurdles. You take them as they come, right? That’s the thing with Penelope that we’ve always learned, is just deal with it as it comes,” said Corey.

Penelope started preschool four mornings a week at Perkins County Schools this fall and has been working with occupational, physical and speech therapists since birth.

Corey said while it’s been hard to let go, the benefits for Penelope have been huge. 

 “Her speech has just flourished,” said Megan.

While her classmates are all very accepting of her, Megan said she knows there will be a point when kids will make a transition and she doesn’t want them to be afraid to ask questions.

Megan envisions telling them, “This is Penelope and yes, she has Down syndrome and this is what Down syndrome is. 

“It just means it might take her a little bit of extra time to write her name or read the way that you do, but she’ll get there and you can help her and encourage her.” 

Penelope’s big brother Ryder, 11, is always looking out for her and she thinks the world of him. 

Megan said they feel like they’ve won the lottery.

“She’s so funny and she is so smart and very determined. She’s got some sass to her, which I love, because I think all girls should have a little.”

World Down Syndrome Day on March 21 is a global awareness day which has been officially observed since 2012. The date, the 21st day of the third month, was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome.

Megan and Corey also want to raise awareness on the negativity of using the R-word. Even if it’s not used in an offensive way, the word is hurtful and there are so many other words that can be used in its place. 

Corey said this community has been great, and he’s pretty sure there are more people who know Penelope than know them. 

Originally from Portland, Oregon, Megan said she couldn’t be happier to be in a smaller community where people look out for each other’s kids and each other.

“I think a lot of us could learn more from Penelope. She is always saying hello and smiles and waves to every single person who walks by and just has that desire to be social,” said Megan.

Corey says it best, “I don’t understand why they call it Down syndrome. It should be called Up Syndrome. There’s nothing down about it.”

(Photo of Penelope by Tiffiany Williams Photograpy)

 

The Grant Tribune-Sentinel

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Grant NE 69140