‘Her spirit knows she needs to celebrate’

 

Hannah Kinslow lights up any room she enters, including those at her second home – Children’s Hospital. Hannah was born with a serious form of Hirschsprung’s disease, spent months in Vanderbilt’s NICU, and even now at 6 years old, has regular specialty visits as part of her comprehensive treatment.

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At 6 years old, Hannah Kinslow lights up a room. She’s the center of attention, has sass and attitude, and her energy is infectious. While that may sound like many young girls her age, Hannah has more reason than most to be joyous.

Hannah was born at a local hospital, but the team there immediately realized she needed more advanced care and she was transferred by ambulance to the neonatal intensive care unit at Monroe Carell Jr. Children’s Hospital at Vanderbilt.

After several tests, Hannah was diagnosed with a severe form of Hirschsprung’s disease, which occurs when nerve cells in the colon don’t completely form, causing her colon and intestines not to work properly. She had surgery immediately after diagnosis.

“When you are talking about a newborn going into surgery and not knowing what is going to happen; it’s pretty stressful,” dad Tracey said.

“You’re helpless. You need someone to give you answers – otherwise you aren’t going to make it,” mom Rhonda added. “Especially at the beginning when we didn’t know what she had – let alone whether she would survive it – we were just terrified parents. You didn’t see beyond that day, that week or that month in the NICU.

“Vanderbilt provided answers and reassurance that Hannah was going to be okay every time we needed it. Anytime we had fallen, they were there to pick us back up.”

About 1 in 5,000 people have Hirschsprung’s disease, and only about 20 percent of those have the more severe form like Hannah’s.

Hannah spent months in the NICU, while a Children’s Hospital team and her parents mapped out treatment plans. Even after going home, Hannah had several hospital stays due to infections and other issues.

“Children’s Hospital gave us a sense of consistency, of knowing we had a place to go,” Tracey said. “Where we could not only get Hannah treated, but have both a short- and long-term plan for how we could get her to a better place.”

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A comprehensive approach

Those plans required resources that only a comprehensive hospital like Vanderbilt Children’s could provide, with team members ranging from doctors and nurses to child life specialists, nutritionists, home health nurses, feeding therapists and more.

Pediatric gastroenterologist Kelly Thomsen, M.D., first met Hannan as a newborn in the NICU and has managed her care since then.

“We have all the right resources here to put together teams that meet the medical needs of our patients,” Thomsen said. “We offer an individualized approach where everyone on the team is working toward a common goal, and Children’s Hospital is a unique environment to be able to offer all the services needed and have coordination of care.”

That coordination made a difference for the patient and the family.

“The doctors would come by as a team and answer all of our questions, listen to us, and explain things with patience,” Tracey said. “The staff understand where you are coming from and the level of stress you are dealing with. They were invested in our lives; they were invested in our well-being, and they were invested in Hannah getting better.”

Hannah has had an ostomy bag since birth, and at 10 months old, simply stopped eating. In addition to the ostomy bag, she currently has a G-J tube, where food is directly injected into her stomach two to three times a day. Hannah works with feeding therapist Caitlin L. Gogoll, M.S., weekly to improve chewing and swallowing and to determine which foods she likes. The long-term goal is for Hannah to eat a normal diet by mouth.

Hannah had a central line until last year, and home health nurse Lori Marsh RN, BSN, visited once a week to change the dressing, draw blood and check-in; another piece of the comprehensive team that has cared for Hannah.

“As a mom, you want to be able to take care of your child, but when you have a child with a chronic illness, you have to rely on others. Children’s Hospital manages to deliver service in a way that makes children happy,” Rhonda said. “To see Hannah’s face light up every time Lori comes is comforting to a mom. Your child is excited to see the nurse that is coming to draw blood. Who gets excited about that?”

Medically, the goal is for Hannah to eat by mouth and then remove the G-J tube. Once that happens, an additional surgery can be performed to reattach her intestines and eliminate the ostomy bag.

But in the meantime, life goes on and Hannah reached a milestone last year her parents weren’t sure would happen: She started school.

“Kindergarten for us was something we didn’t know would happen for her,” Rhonda said. “To see her healthy enough to attend a regular public school just like other kids her age is a celebration. It’s one of the biggest milestones in her life thus far. And she’s doing phenomenally.”

To come full circle, Hannah was in the same kindergarten class with her doctor’s daughter. “It’s a really big deal,” Thomsen said. “Not only do I see her in the office but I saw her on field trips with the classroom, so I’ve witnessed first-hand how far she’s come.”



biggest milestone so far: first grade

Rhonda said starting school is Hannah’s biggest milestone “thus far” because everyone who meets her knows there is more in store for the girl who lights up the room.

“It’s interesting the impact she instantly has on everyone she meets,” Tracey said. “She leaves an impression – they love her feisty, funky spirit.”

Rhonda shared that spirit translates to Hannah’s experience at the hospital.

“She walks in to the hospital with so much confidence, and I think that’s her own self-confidence, but it’s also the confidence she has in the people,” Rhonda said. “They love her and she loves them. They respond with the same level of enthusiasm Hannah has – that same level of energy – and they just radiate. They are really like family.”

Rhonda said the team at Children’s Hospital has played an integral role in Hannah’s success and has been the family’s partner in the journey.

“It’s amazing to look at where she came from and where she is today, and see all the people that had a hand to play. It’s truly amazing that all those people came together at Vanderbilt to save this little girl’s life.

“Hannah has a lot to be thankful for. Even though she doesn’t know it today, when she looks back on her life, she will realize her life is a miracle.”


"The staff understand where you are coming from and the level of stress you are dealing with. They were invested in our lives; they were invested in our well-being, and they were invested in Hannah getting better."