Patients in the Spotlight: Brooke Ellis

Baby girl overcomes multiple medical obstacles

An ovarian cancer survivor, Krystle Ellis didn’t think she was ever going to be able to have a baby. For her and her husband, Ricardo, the world changed, when they got the news in February 2012 that Krystle was pregnant. While the Brighton couple firmly believed the pregnancy was a miracle, they had no idea about the journey they had yet to face.

From her first ultrasound at UR Medicine’s Strong Memorial Hospital, Krystle knew something was wrong. The scan showed that baby Brooke’s neck was hyper-extended and her brain and musculoskeletal system weren’t developing correctly. Krystle also had a uterine fibroid tumor that was sitting on top of Brooke’s head, taking up most of her space in the womb.

Brooke was delivered on Oct. 21, 2012 by c-section and, after extensive resuscitation due to her multiple deformities, was rushed to the Neonatal Intensive Care Unit (NICU) at UR Medicine’s Golisano Children’s Hospital. Although she is now, developmentally, 16-months-old, many in the NICU weren’t sure Brooke would make it past her first week. In fact, she nearly didn’t make it past her first 24 hours. In addition to being born with her hip displaced and multiple defects, Brooke developed severe respiratory failure and her cardiovascular system wasn’t able to sustain itself, requiring her to need high frequency ventilation, a chest tube, and maximum blood pressure support.

“The night of Brooke’s birth I was awakened by one of our nurses and told I should go to the NICU to be with her during what were expected to be her last hours,” Krystle said. “My husband and I reached our hands in her isolette, touching our baby, and we began to pray. After about 15 minutes, Brooke began to turn around and we knew, even more than before, that she was our miracle baby.” 

“When Brooke was born we didn’t expect she would make it out of the delivery room,” said Sanjiv Amin, M.D., neonatologist at Golisano Children’s Hospital. “The complexity of her issues and lack of prognosis had several people asking why we were continuing her care, but it was important to me to honor the parents’ request of giving her more time and, in the end, she started showing progress.”   

Brooke was in the NICU for nearly four months, from Oct. 21, 2012 until she got to go home on Jan. 13, 2013. “Despite Brooke’s challenges, we couldn’t have asked for a better experience in the NICU,” Krystle said. “We cried when we left. The nurses, especially those from pods C2 and A1, are like Brooke’s other moms. We call them her aunties and uncles.”

After only three days at home, Brooke was rushed to the Pediatric Intensive Care Unit (PICU). It wasn’t clear what was wrong, exactly, but after about a week in the PICU, it was discovered that she had a small bowel perforation. After opening her abdomen in the operating room, doctors found the intestinal burst had caused sepsis, a potentially fatal whole-body inflammation caused by infection that made Brooke acutely ill.   

“We were in round two,” Krystle said.

Yi-Horng Lee, M.D., pediatric surgeon at Golisano Children’s Hospital, and Jennifer Maddison, N.P., operated on the perforation and had to leave Brooke’s stomach open for several weeks to let the infection drain. Because of her dislocated hip, she couldn’t lay flat during any of her time in the ICU.

“Jennifer and Dr. Lee were with us every step of the way,” Krystle said. “They fought through it with us.”

After spending about a month in the PICU, Brooke was transferred to 4-3600, where she recovered until mid-March.

In November 2013, Brooke had surgery on her hip, requiring her to be in a full body cast for three months. “Despite being in the cast, the orthopedic team made it so there was a window cut out where we could access Brooke’s various tubes,” Maddison said. The cast was removed in February.

“We couldn’t imagine her being anywhere else,” Krystle said. “Our energy and faith, combined with the strength of the nurses and doctors, are the reasons we believe Brooke made it.”

The Ellis’ experience at the children’s hospital, especially the relationships they built while in the NICU, has inspired them to give back. Krystle volunteers her time making headbands for the newborns and decorating their IV poles.

Brooke is now eating successfully, is independent, and regularly attends physical and occupational therapy, as well as speech. She continues to be a little ‘fashionista,’ having never repeated an outfit while on the units.

“She may have been the sickest baby, but you could always expect that she’d be dressed to the nines,” Maddison said.

“She is our little Spartan, a little warrior,” Krystle said. “With each day, she continues to show us that anything is possible.”