Norah’s got heart

Published 10:30 am Saturday, February 5, 2011

Graphic by Kathy Johnson/Albert Lea Tribune

Our little miracle.

That’s how little Norah Johnson’s family members refer to her.

At first glance, one might not immediately see anything but the miracle of life that shines through in all babies. Full of smiles and just starting to giggle at 7 months old, Norah loves her home in Minneapolis with big brother, Nolan, and her puppy, Colossal; mom, Leah, and dad, Andrew.

Norah Johnson

She loves her grandparents, Esther and Bill Zezulka of Clarks Grove and Jim and Judy Kortz of Albert Lea.

The pick IV line in her arm and the feeding tube through her belly, however, tell of the struggles and amazing fight Norah has shown in her short life: the story of a little girl who needs a new heart.

Norah was born almost 12 weeks premature due to left ventricular noncompaction cardiomyopathy, which is a rare congenital heart disease where the muscle in the heart doesn’t pump properly. She’s currently listed as a 1A – which is the most critical condition – for a heart transplant.

“She’s critically stable and doing great now,” said Leah during a phone interview last week. “We cherish the good days.”

Norah was supposed to be born Sept. 12, 2010. More than two months before that, however, an ultrasound detected something wrong with her heart.

When Leah went in for a routine checkup on July 1, the day before she had originally scheduled the appointment, the ultrasound showed baby Norah going into heart failure, in utero. Leah was rushed to Abbott Northwestern Hospital in Minneapolis, where Norah was born via emergency Cesarean section. She was only 29 weeks gestation period.

Norah Johnson is pictured with her big brother, Nolan, and parents, Leah and Andrew, at a family gathering last weekend. -- Submitted photo

Born 4 pounds, 4 ounces, nearly half of Norah’s weight was from fluids because her heart wasn’t functioning properly in the womb.

“She looked like a tiny, plastic doll,” said Esther. “Her skin was so tight.”

Norah lost the fluids and went down to her “dry weight” of 2 pounds, 3 ounces. Immediately, doctors started her on IV’s and feeding tubes. The Children’s Hospitals and Clinics of Minnesota-Minneapolis, which is connected to Northwestern, became her home for the next six months.

Leah and Andrew spent as much time as they could with her in the hospital while also balancing time with Nolan.

“She was so sick and so fragile, we couldn’t hold her every day,” said Leah. “But we were there every day and everybody knew us by name — the people at the welcome desk and even the janitors.”

At one month of age, Norah endured her first surgery, to close up a hole in her heart. Then on Nov. 19, she was placed on the list to receive a heart transplant.

Esther Zezulka of Clarks Grove is pictured with her granddaughter, Norah Johnson of Minneapolis, shortly after the baby was born nearly 3 months premature. -- Submitted photo

Leah said as an infant, Norah would be at lower risk of rejecting a new heart through a transplant. The body would more easily take on the heart as its own, growing with her. Yet, being so young and small, there’s a higher mortality rate with the transplant.

“There’s no way of telling when she will get it,” said Leah. “It could be at any hour, and there are a lot of different things that factor into the heart she gets — blood type, weight, age.”

Even after the transplant, Leah said, Norah will have to be on medications and her heart condition monitored for the rest of her life. For now, Norah takes 26 doses of medicine a day and has two IV’s giving her medication around the clock, to make her heart pump properly.

And although she’s still small, 12 1/2 pounds at 7 months old, Norah may always be petite, but everything else, both physically and developmentally, is progressing just fine.

“She’s so full of life and doesn’t act sick,” said Leah. “Everyone who meets her comments on how well she looks.”

Norah is also thriving from the love of her family and prayers from friends. She was sent home to live on Dec. 6, and has traveled to Freeborn County more than once to visit family. She is well-tempered and enjoys watching everything and everyone around her.

While the Johnsons try to get back to “life as normal,” it’s not easy as they juggle doctor’s appointments along with their jobs — Leah works part-time as a hairstylist and Andrew full-time with UPS. They appreciate all of the support and well-wishes they’ve received from their hometown.

“She’s just a beautiful little girl,” said Esther. “Norah is doing wonderful and Leah is just fantastic with her. It just breaks your heart to think that something like this could happen.”

“We’ve always been positive through this,” said Leah. “Just send your positive thoughts and prayers.”

To help
Send thoughts and prayers to Norah and her family at www.caringbridge.org/visit/norahjohnson.
Fundraising efforts have also begun to help with Norah’s medical bills. Arm bands that say, “Norah’s Got Heart” are on sale for $5 each, available by calling 507-256-4870.