Sigh. Isn’t she just perfect? All cheeks and bow and new baby smell. She was born in February of 2017 after a picture-perfect pregnancy and “calm, serene” delivery, per her mama Amber. Little did Amber know, this was the calm before the storm.
From the very first day, Shelby had trouble eating. She would eat and throw up, eat and throw up, over and over. And she didn’t have any dirty diapers. This might seem like a win, but it’s actually really, really bad. At six days old, Shelby’s doctor ordered a barium enema to determine if there was a blockage or something more serious going on.
“It was awful – sitting there with my six-day-old baby strapped to a board while they injected fluid into her,” Amber remembers. “It was even worse when, instead of it coming out as an enema should, she vomited it all up. We were scared and realized instantly something was really wrong.”
Tiny and dehydrated, Shelby was admitted to the hospital. She couldn’t feed because she couldn’t eliminate what her body consumed, so it was a race against the clock to figure out what was wrong. A biopsy of her colon revealed Shelby was missing the cells required to help her intestines function properly, and ultimately doctors diagnosed her with Hirschsprung disease.
In addition to being unable to eliminate waste, babies born with Hirschsprung disease have abdominal pain and swelling, vomiting, poor weight gain, and can develop life-threatening complications if not treated quickly. And the treatment isn’t easy – at just two weeks old, Shelby had surgery to remove the part of her colon that lacked the nerve development needed to function properly, and had a colostomy pulled so she could go.
As you can imagine, caring for a newborn with a colostomy bag was a nightmare. But when she was four months old, a specialist in Ohio helped get things on the right track, and Shelby soon underwent another surgery to have her colon reconnected.
It was a rough first year, filled with difficult complications and procedures, but through it all, this sweet girl thrived.
It took a while, but she started hitting her milestones.
She started eating solid food and having actual dirty diapers, which was huge! But it came with a whole new set of complications that make Shelby’s everyday life incredibly complex. Her digestive tract is incredibly sensitive, and her family must keep a really close eye on what she consumes to avoid agonizing consequences. Additionally, Shelby’s last surgery left her unable to control her sphincter muscle, so she dirties her diaper eight to 10 times per day. In case you’re wondering, THAT IS A LOT. Without diligent care, she’ll develop the most horrific diaper rash and blistering pain.
“We have to be on top of everything she eats, every single diaper change,” Amber told me. Any deviation from the plan could result in pain and misery no one should endure, let alone an 18-month-old child. It’s not an easy thing for a kid’s own parents to do, can you imagine finding a daycare with staff both willing and equipped to provide that level of detailed care?
Add to that Shelby’s developmental delays due to frequent surgeries and medical setbacks, and it’s nearly impossible to find quality care. Fortunately for Shelby, her parents found just the place to make sure she’s safe and healthy, and help her catch up with other kids her age. The only challenge now is paying for it.
We believe quality, compassionate care is important for everyone, especially people facing unimaginable challenges like Shelby does. So when Amber reached out to Chive Charities for tuition assistance at a dream preschool, we didn’t hesitate for a moment. Thanks to our generous monthly donors, we provided a $10,000 grant to cover a year of Shelby’s tuition. It’s a step in the right direction and we can’t wait to watch her grow.
“Honestly, it’s scary to think about what may be ahead for her,” Amber said. “For now, we choose to live in the moment, take it as it comes, and be thankful that our baby girl is with us.” Very good advice, Amber. We’re thankful, too.
O.K. Remember how I said I was leaving out details that would make a grown man cry? You’re welcome. But listen: there are many more kids and families facing unthinkable challenges, and while it’s not easy to read, it’s easy to be the one who helps behind the scenes. Become a Chive Charities monthly donor and change lives just like Shelby’s RIGHT HERE.