Second Only Case of “Growth Stunting” Rare Disease in Baby Girl
September 2, 2014
Bricanna Brendel weighed just 4 pounds and 11 ounces when she was born on Sept. 10, 2013, to Travis Brendel and Lorie Hjelmstad after 34 weeks gestation. She has not grown much since birth.
Bricanna was born with an extremely rare disease — only the second known case in the world — that is stunting her growth.
Now 11 months old, she is only 24 inches long and weighs just 9 pounds. The disease is so rare it does not have a name.
“When I was pregnant, the doctors at Denver Children’s wanted me to terminate at 19 weeks due to a mass and cyst on her brain and fluid on the heart,” Hjelmstad said. “I refused, and they claimed she would have a less than a 43 percent chance of being normal or survival. When she was born six weeks early, she didn’t need any oxygen and spent only 10 days in the NICU.”
After no growth, Bricanna was taken back to the doctors.
“She went through a series of genetic testing and the doctors found out that she has a triplication of the eighth chromosome,” Hjelmstad said.
Bricanna began treatment at Mayo Clinic in Rochester, Minn., in February. Doctors at Mayo are attempting to figure out what is causing Bricanna’s stunted growth and lack of weight gain. Since her disease is so rare, doctors are using Bricanna’s treatment as research.
“She has gone through a lot of testing and lots of blood work, so we go to Mayo quite frequently for that. They monitor her for two weeks at a time,” Hjelmstad said.
Bricanna was also diagnosed with gluceric acedimia type 2 early this year. That disease deflects the body’s ability to use proteins and fats for energy. Fats and proteins that are processed incompletely can lead to a dangerous chemical imbalance called acidosis, Hjelmstad said.
Bricanna gets 16-hour feeds through a feeding tube. Just one can of her food is $64, and Hjelmstad has to order it specially from a pharmacy. Bricanna has started to eat some foods, but doctors are still unsure if she will be able to digest them due to the proteins.
Hjelmstad has two other children. Dax, 6, and Allie, 13, have been along on the journey with their sister. The family is moving to Bismarck later this year from Wyoming.
“I feel bad because they haven’t been able to do a lot of the stuff that they’d like to do this summer. Allie usually goes to a volleyball camp every summer, but this year she was unable to, due to all of the traveling we were doing for Bricanna. Their summer was basically shot because of all the traveling,” Hjelmstad said.
Since Bricanna’s disease is unknown, and since it is a genetic disorder, there is no cure. Doctor’s are unsure of how long of a lifespan she will have.
“I stay home with her and take care of her every day. It’s just one of those things where I never know which day is going to be her last, so I want to be with her as much as I can and be able to take care of her,” Hjelmstad said.
“Bricanna having this disease hasn’t been a burden, but more of a life lesson. Although she’s going through this, she still is one of the happiest little girls I have ever seen. Seeing her smile and her blue eyes light up makes me so happy,” Hjelmstad said.
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