NORTH PLATTE, Neb. (AP) - When Chantella Nesslein takes her youngest daughter out, people seem to gravitate toward the little girl.
It’s easy to see why, with her brown hair and big blue eyes that are constantly searching the world around her.
She looks like any other baby - but she’s not.
Those who ask how old Nesslein’s daughter is are usually surprised when Chantella says, “She just turned one.”
When Nesslein found out she was pregnant with her fourth child, she was determined to do everything right.
The North Platte Telegraph (https://bit.ly/1NcvZsc ) reports that she took her prenatal vitamin every day, watched her diet and stayed active. All of the ultrasounds looked good and the prenatal screenings were normal.
“I was having a normal pregnancy,” said Nesslein. “Then I went into labor.”
It was two and a half months too early. Doctors worked to stop Nesslein’s contractions for four days, but their efforts were unsuccessful. Love Always Harmon came into the world weighing only four pounds. Profit Harmon, the baby’s father, was on his way to the hospital when he got the phone call telling him his daughter had arrived.
When he arrived, Nesslein was trying to figure out what was wrong with her baby. She didn’t cry when she was born and she looked “floppy.” Moments later, the little girl was whisked away.
“They said she didn’t look right,” said Nesslein. “When someone tells you that about your child, it hurts. I didn’t even get to hold her.”
Nesslein said it was less than an hour before Love was transported to Children’s Hospital in Omaha, where she was admitted into the Neonatal Intensive Care Unit. During her time in the NICU, Love experienced two collapsed lungs, one right after the other, and was determined to be suffering from “failure to thrive” - meaning she was unable to grow and develop the way she was supposed to.
“They told us to be prepared because she might not make it,” Nesslein said. “I was crying all the time, and worrying. Profit was just like, ’You need to stop, you can’t change it.’”
Harmon admits that he too, was struggling with the idea that something was wrong with his child. He said it hit him hard when Nesslein asked, “Why our baby?”
At one month old, Love was given a diagnosis of Prader-Willi syndrome. The couple had never heard of it, and hoped it was something minor. Unfortunately, that’s not the case.
PWS is a rare genetic disorder caused by a deletion of a part of chromosome 15. It often causes behavior problems, intellectual disability, short stature and constant, insatiable hunger. There is no cure.
“It was a major shock,” said Harmon.
Love turned one on Nov. 3, and is starting to cut her first teeth. She still only weighs 15 pounds and looks much more like an infant that a one-year-old. She can’t hold her head up and she still doesn’t cry much. In fact, the sound of her cry is so rare that it makes her parents tear up when it happens.
“It sounds weird,” said Nesslein. “But I’ve never wanted a baby to cry as bad as I want her too.”
Love has to maintain a strict diet and is fed every 3 hours around the clock. She’s got a feeding tube in her stomach for liquids, but is beginning to eat regular foods.
Love’s parents try to take things day by day - otherwise they’re left to worry about what’s to come. The severity of Love’s condition may not be known for years. She may be non-verbal, epileptic, diabetic or suffer from a slew of other conditions. She could require care for her entire life or she could live a fairly normal life.
“If she needs to stay with daddy, she’ll stay with daddy,” Profit said, although he admits that it’ll break his heart if she’s not able to have relationships and experience a normal life.
“We don’t know,” Nesslein added. “We hope she’ll be able to live an almost-normal life, but I don’t mind having her stay with us forever.”
Nesslein said her biggest fear is having to tell Love “no” when her daughter’s brain is telling her she needs food.
“How do I look her in the eyes and say ’no’? said Nesslein. “How do I tell her she can’t eat when she feels like she’s starving?”
Right now, the couple is looking forward to a growth hormone that may help treat Love’s condition and help speed up her development. For many PWS babies, the hormone can have a huge positive impact and Profit said most of the time it can be seen in a matter of days. Nesslein said she believes with current research, more treatment options may be available for Love by the time she’s 5. The family is hoping to partner with other PWS families to raise money for research in the future.
In the meantime, the pair of parents plan on enjoying their time with Love, along with their other little girls - each has three from previous relationships who enjoy spoiling their baby sister.
“I’m a special needs mom, and it’s mind blowing - you don’t think it’s ever going to happen to you,” Nesslein said. “I wouldn’t change her for the world, though. My grandma told me that God puts every person in your life for a reason and there’s a reason she came to us.”
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Information from: The North Platte Telegraph, https://www.nptelegraph.com
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