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With support from the expert team at Children's Hospital Colorado, little Anneliese has overcome a number of obstacles.
Anneliese entered the world six weeks early. She had respiratory failure and needed mechanical ventilation to support her breathing. She also had issues with her heart and couldn’t see or hear well. Like any parent in such a situation, Holly experienced a roller coaster of emotions.
“I was scared she wasn’t going to make it,” Holly said. “The obstetrician told me it could go either way.”
The doctors at the hospital where Anneliese was born believed her symptoms were more than the normal complications of premature birth. They thought they might be due to a genetic issue, so they transferred Anneliese to the neonatal intensive care unit (NICU) at Children’s Colorado, a Level IV NICU, an American Academy of Pediatrics designation given to NICUs able to care for the most acute cases. This translates to the greatest possible care in the region for premature babies and critically ill newborns.
“It became evident over the next several weeks that Anneliese actually had several congenital defects that were causing her complications,” said Theresa Grover, MD, Medical Director of the NICU at Children’s Colorado. “Oftentimes, what are thought to be normal complications are actually abnormal. We determined Anneliese had a rare genetic syndrome called CHARGE, which meant she would require care from several different subspecialists. Fortunately, those subspecialists were readily available here, and we were able to meet all of her complex medical needs.”
Anneliese had to undergo heart surgery, stomach surgery and a procedure to open her nasal passages. She remained on breathing support for several months. She received care from subspecialists in neonatology, cardiology, cardiac surgery, ENT surgery, general pediatric surgery, genetics, ophthalmology, hematology, endocrinology, and speech, occupational and physical therapy.
“At first I was nervous because there were so many doctors and therapists, but everyone was great,” Holly said. “They all knew Anneliese and her story before they ever walked into her room. They just knew what they were doing. That made me feel confident.”
While Anneliese’s medical needs were complex, Dr. Grover said her story is par for the course for the NICU. Children’s Colorado has developed nationally recognized treatments and programs to care for babies like Anneliese. One example is the NICU’s ventilator care program, which uses a full range of conventional and advanced mechanical ventilation therapies — such as ECMO (extracorporeal membrane oxygenation) — to care for infants with severe respiratory or heart failure. The program has substantially improved survival rates for babies who need long-term breathing support.
“We have a more complicated population of patients here, and we’ve developed a high level of expertise for even the rarest conditions,” Dr. Grover said. “The neonatologists who were involved in Anneliese’s care are national leaders in clinical care and research. In many cases, our subspecialists are the ones developing the latest therapies and implementing them at Children’s Colorado.”
On May 21, 2014 — four months after Anneliese was born — Holly got to take her daughter home. She’s now enjoying life in Black Hawk, cherishing every new day she has with her baby girl.
“She’s doing great now,” Holly said. “She’s adjusting to home life really well.”