From the outside, Brenna R. Flynn appears to be a happy, healthy baby.
Looks, said her mother, Kiley J. Taylor, can be very deceiving.
She doesnt look really as bad as she does on paper, Ms. Taylor said. On the inside, shes a mess. Shes so rare that no one knows what to do with her. Her hearts broken.
After her first open-heart surgery last September, when she was just a couple of weeks old, Brenna will undergo a similar surgery Wednesday at Strong Memorial Hospital, Rochester.
Dr. George M. Alfieris, a pediatric heart surgeon at Strong Memorial, has said Brenna is one of the rarest medical cases he has seen in his 20-year career. Brenna was born with no aortic arch, which prevented a normal path for blood flow, and with truncus arteriosus, which is when a single blood vessel comes out of the right and left ventricles instead of two normal vessels.
Brenna also has a large hole in her heart and a few physical deformities. What stands out more, however, is her short blonde hair and bright blue eyes as she flashes her electric smile.
Dr. Alfieris knew all of Brennas issues were an unusual combination. An arch was constructed in the first surgery, but she still had the hole in her heart. Trying to tackle it all at once was too risky, Ms. Taylor said.
Weighing in now at just 15 pounds, Brenna is small, but mighty, her mother said. She still is fed mostly by a feeding tube, but finally has been able to consume small portions of baby food and a bottle by mouth. She often becomes overexerted in that simple activity, Ms. Taylor said, because her body works so hard at the most basic functions.
Brenna cries, and expresses herself with coos, but has yet to say Mama or Dada. Ms. Taylor said a big milestone was reached just last week when Brenna reached out to someone one of her three older sisters for the first time. Before that, she was too weak. She also just started sitting up on her own.
On Wednesday, Dr. Alfieris will revise Brennas aortic arch and attempt finally to close the hole in her heart. A conduit a plastic tube from the upper part of Brennas heart to the lower part also will be replaced. Ms. Taylor said Brenna also may have a pig valve put in.
During the procedures, which will take at least several hours, Brenna will be put on a bypass machine.
The surgery will be much more complex, Ms. Taylor said. Its going to be a big deal.
Ms. Taylor and her fiance, C. Zack Flynn, both of Chaumont, will arrive in Rochester on Tuesday for their daughters preoperative testing. Their bags will be packed with at least a few weeks worth of clothes, but Ms. Taylor said she is prepared for a longer stay. This isnt their first rodeo, and it wont be their last.
Eventually, Brenna will have to have a jaw reconstruction, Ms. Taylor said, because her small jaw could affect her breathing and eating.
Brennas complex medical team includes a craniofacial specialist, an eye doctor, an ear doctor, a pediatric surgeon, a gastroenterologist, a cardiologist and her local pediatrician, and that is not counting the many nurses and support staff who also have cared for her. Most appointments are handled in Syracuse, but surgeries remain in Rochester.
Because the childs case is so rare, Ms. Taylor said, the books havent caught up to Brenna.
Shell probably write this chapter, she said.
Dr. Alfieris was unavailable for comment Friday.
The family remains cautious yet hopeful and, while Brenna is a very sick baby, Ms. Taylor does not want to shelter her from all of the outside. Brenna becomes overjoyed when she meets new people, Ms. Taylor said.
That is exactly how she felt, Ms. Taylor said, during her first birthday party a few weeks ago. It was given by Maddies Mark Foundation, which helps children in life-threatening situations not have to worry, for just one day, about being sick or dying.
It, by far, truly was our best day ever, Ms. Taylor said. It truly was a celebration of her being here. The same day we had her, within hours, we were told she wasnt going to live. Just think where we were a year ago.