March of Dimes – ‘She fought for so long; I can fight too’
BEMIDJI – Bella was supposed to take part in her first March for Babies next weekend.
She was supposed to join her parents, Chris and Rachael Jaranson, in their second March of Dimes event, raising money and awareness for the nonprofit that works toward the birth of healthier, stronger babies.
But Isabella Lynn Jaranson died unexpectedly last June, one week shy of turning 7 months old.
“All I ask of God is to love her like we did, like we do now,” Chris said recently. “She was such a sweetheart, just the sweetest little girl.”
Chris and Rachael, this year’s March for Babies ambassadors, will walk Saturday in memory of their daughter’s.
As they share Bella’s story, they celebrate the March of Dimes and hope to raise money for and awareness of its work in preventing birth defects.
“It’s something I feel that I can do for Bella,” Rachael said. “She fought for so long; I can fight too.”
‘She was recovering’
Bella was diagnosed in utero with a heart defect and a large omphalocele (a defect of the abdominal wall that allows internal organs to protrude or develop outside of the body). Testing revealed she had a translocation of two of her chromosomes.
Bella was born via c-section on Nov. 17, 2011, at the University of Minnesota Amplatz Hospital.
At birth, she was diagnosed with also having an enlarged heart, no pericardium sac, multiple holes in her heart, and a congenital diaphragmatic hernia.
She underwent her first surgery at 3 days old. Two months later, to improve her breathing, she underwent a tracheotomy, and later, she had surgery again as a feeding tube put in place.
“She was still so happy,” Rachael said.
“She was always super positive,” Chris added.
Despite her struggles, Bella thrived.
“She would play, she would roll, she would smile,” Rachael said.
And, after 175 days in the neonatal intensive care unit, on May 8, Bella came home. A caravan of vehicles, led by her ambulance, brought her to Bemidji.
With 24-hour nursing in their house, Chris and Rachael said their home basically had two miniature NICUs, one in Bella’s bedroom and one in the living room.
She was developing; she was flourishing. There was no reason to suspect that wouldn’t continue.
“She was expected to fully recover, from everything,” Chris said. “She was recovering. She was doing so good.”
But on June 11, after a routine clinic visit, Bella died. Chris was driving home, his mother-in-law in the car, when he saw Bella yawn from in her car seat. When he got to the house, he found Bella unresponsive.
He did CPR and emergency workers tried to bring her back.
But she was gone.
“We had no reason to believe she was going to die,” Rachael said.
Bella touched ‘many lives’
Chris and Rachael first walked in the March of Babies last April, bringing together more than 40 friends and relatives all hoping to contribute to an organization pioneering efforts and research into the cause of chromosomal abnormalities.
“In the short time that she was here, Bella touched so many lives,” Chris said. “She was probably more popular than me and my wife combined. We’re just really grateful for her.”
Rachael noted the March of Dimes helped discover that increased folic acid in pregnancy can help decrease the likelihood of spinal defects.
Hopefully, a similar discovery can help prevent chromosomal abnormalities, she said.
“My hope is to raise money so no parent will have to go through went we went through,” she said.
“No parent should have to go through that,” Chris agreed.
The March of Dimes fights premature birth and works to prevent birth defects. The first in utero surgery done to repair a diaphragmatic hernia was performed in 1989 by a March of Dimes grantee.
The March of Dimes works to discover genetic causes of birth defects, to promote newborn screening, and to educate medical professionals and the public about best practices for healthy pregnancy, according to its website.
“No one wants to face anything going wrong in a pregnancy,” Chris and Rachael wrote in telling Bella’s story, “but when it does, it’s nice to know there are organizations out there like March of Dimes to help.”
‘What bella taught us’
Chris had a dream last fall.
Bella, appearing to be about 2 years old, was healthy. She was smiling and happily playing. Then, seemingly out of nowhere, she looked back at her dad and said, ‘My sister’s name is Ella.’”
Three weeks later, Chris and Rachael learned she was pregnant.
A few months after that, they learned they are having another daughter.
Ella Lynn, to be named in honor of her older sister, is expected to arrive in June.
“It was really nerve-wracking,” Rachael said of the pregnancy. “I had ultrasounds at six and nine weeks, but you can’t really see any birth defects until 20 weeks.”
After undergoing their own chromosomal testing, Chris and Rachael were told there was a less than 1 percent chance any future child would have similar birth defects to Bella’s.
Rachael’s 20-week ultrasound, the point at which they initially learned of Bella’s complications, showed a healthy, thriving baby this time around.
“We’re excited,” Rachael said.
The couple, who married in June 2010, said because of Bella, they are better people, closer now to one another because they learned to turn to and lean on one another.
“I’d rather remember the things that were hurtful, that were hard, than to forget anything at all,” Chris said. “That’s what Bella taught us, to not take each other for granted.”