After receiving a book about a cat who visits the library, three-year-old Charlotte Williams became obsessed with the idea. So just last week she became the joyful recipient of her first library card. With the new card in hand, Charlotte characteristically led the way: “She ran right in, pulled three books off the shelf, sat at a table and started ‘reading,’” her mom Crystal shares.
Full of this energy and attitude is how Charlotte approaches life. This strong spirit has helped her battle through a rocky start to life and many ups and downs that followed. “This experience made us appreciate her fighting personality. Without this feisty personality, she would not have made it through the toughest journey in her life,” Crystal remarks.
A ride to recovery
Charlotte was born with very serious lung and heart problems. Both of her lungs leaked air to the point that they caved in, eventually collapsing, due to the surrounding air pressure. Unrelated, the small blood vessels that carry blood to her lungs remained constricted (narrowed) after she was born, limiting much-needed oxygen to her body and affecting her heart. This life-threatening condition, persistent pulmonary hypertension of the newborn, happens if a newborn’s body doesn’t transition as it should in terms of how blood circulates. The arteries around the lungs are constricted before birth (oxygen gets to the fetus through the placenta) but once the umbilical cord is cut, they need to widen to allow enough blood to flow through the lungs to provide adequate oxygen to the body.
Chest tubes were placed on both sides to remove air from her chest cavity and allow her lungs to re-expand and heal, but doctors at the hospital where she was born knew she needed a higher level of care, and arrangements were made to bring her to us.
Within hours, CHoR’s neonatal intensive care unit transport arrived carrying a team with expertise in fragile newborns. “We were told Charlotte had almost no chance of survival and we needed to take her to CHoR,” Crystal recalls. It was sobering news and her family, who lives about an hour and a half away near South Hill, planned to be by her side for every step.
Charlotte arrived at our NICU just 20 hours after she was born. She was placed on a breathing and support machine called extracorporeal membrane oxygenation heart-lung bypass, or ECMO, by 24 hours. Tubes connected in her neck pumped blood out of her body into an artificial lung where it received oxygen then circulated the oxygenated blood back into her body. ECMO helps the heart and lungs by bypassing them to give them time to rest and get better. Being on this equipment would also protect her vital organs if her fragile, fast-beating heart arrested.
Supporting Charlotte as her breathing and heart function improved was the focus of care while she was in the NICU. Her condition affected eating as well, and being able to take 80 percent of her feeds by mouth was also a goal she needed to reach before going home. Her fighting spirit was evident throughout her stay, strengthened by support from her loving family and strong bonds with our team. Casie Hathaway, the nurse whose caring hands first reached out to Charlotte on the transport, became her primary nurse and within days “her second momma,” Crystal recalls fondly. The rest of Charlotte’s team, she says, became like family. “They were AMAZING. It’s funny how leaving them was the goal, but it was also sad walking out those doors.”
The best day of our lives
Two and a half months after she was rushed here, Charlotte progressed to the point that she could go home. “Every milestone along the way was huge,” Crystal says. They decorated their house with streamers and balloons to welcome her home and added a breathing monitor to her woodland-themed nursery as a precaution. Extended family came for a small gathering the following day and the very first Sunday she was home, they had her dedication at church. “We know without God and those doctors and nurses none of this was possible,” Crystal reflects thankfully.
Having Charlotte home was a great moment to celebrate – “the best day of our lives” Crystal emphasizes – but coming home was really more of a change of direction on a long road. Charlotte still needed significant care to manage medical issues and for her physical development, which was compromised by what she’d been through.
“She had an oral aversion [problems eating and drinking by mouth] so we were followed by speech therapy, and many physical delays, so we saw physical therapy in the outpatient clinic,” Crystal recounts. “She’s graduated PT, but still struggles with feeding issues. We’ve found that her pulmonary hypertension is back and most likely the cause of her not eating, because her heart and lungs get too tired eating.”
Charlotte is monitored by our feeding specialists and has a tube connected to her abdomen to deliver nutrition. She also faces challenges due to the equipment she needed to survive. (While ECMO is life-saving, it’s a difficult process that can produce some long-term effects.) She works with our ear, nose and throat specialists for vocal cord paralysis and our gastroenterology team for digestive issues, both likely complications. She sees several Virginia cardiac specialists for continued pulmonary care, our neurology specialists to manage and identify the cause of seizures she sometimes experiences, and our allergy specialist for care for allergies and a weakened immune system.
Now a vivacious toddler, Charlotte makes friends wherever she goes and is known for being quick to let you know what she wants. Last summer, a family friend introduced Charlotte to Oreo, a stray black-and-white kitten, and right away she insisted: “He going home with me.” The timing was right as they’d just learned she wasn’t allergic to cats. Weeks later, they also adopted Sassy, one of his kittens. Spending time with these two is Charlotte’s favorite activity and something she’s happy to talk about. Coloring, “reading” and playing Paw Patrol are up there too.
“With Charlotte life is never boring,” Crystal laughs. “You cannot be in a bad mood around her.”
Casie is now is a food-challenge nurse in our allergy clinic and still sees Charlotte regularly. “She’s a true miracle,” Casie remarks. “She reminds me daily why I love being a nurse.”
Grateful for another opportunity to care for this very special girl she met when she was just hours old, Casie continues to be inspired by the strength Charlotte shows: “She’s a spunky, sassy, adventurous and brave little girl. I know she will grow up to do incredible things.”
This undeniable spirit has carried Charlotte far in life already, and continues to shine wherever she goes. It’s something wonderful to witness for all who know her.
“Thank you CHoR for saving our girl,” Crystal says sincerely, “and then continuing to help her live her best life.”