Barely breathing at birth: Find out how far Emerson has come

Patients

Emerson

Kara was 38 weeks pregnant with her second child.

As her due date approached, she and her husband, Dr. Dan Searing, an allergist at Children’s Hospital Colorado, were excited to welcome their new baby. Kara had a normal pregnancy, so she and Dan expected a relatively uncomplicated delivery.

But their little girl’s arrival was anything but ordinary.

“I remember looking over at Dan and saying, ‘Why aren’t you taking pictures?’” Kara said. “Then, he brought her over to me and said, ‘Give her a kiss. She’s really sick.’”

Emerson was born in severe respiratory distress; she was barely breathing.

Her Apgar score – a 10-point system used to assess newborn babies’ overall health – was zero. She was unable to be stabilized at an outside Neonatal Intensive Care Unit (NICU), so she was transferred to the Children’s Hospital Colorado NICU, where doctors conducted a battery of tests.

When Kara arrived at the Children’s Colorado NICU, she was in shock.

“There were about 30 people bustling around my baby’s bed. There were machines and beeping,” she said. “My first memory of the NICU is being in a wheelchair and a nurse – who is one of our favorites now – handing me a box of tissues. I didn’t get to hold Emerson until she was 9 days old, because she was so unstable.”

Emerson’s care team determined that her diaphragm – a critical muscle for breathing – wasn’t functioning due to the thinness of these muscles, a condition known as congenital bilateral diaphragmatic eventration. She also had low overall muscle tone, which affected her heart and lungs.  When she was 2 days old, Emerson was placed on an Extracorporeal Membrane Oxygenation (ECMO) machine, which circulated her blood outside her body, performing the job of removing carbon dioxide and providing oxygen. At 7 days old, she was strong enough to be removed from the machine.

An extensive neuromuscular and genetic work-up did not uncover a specific diagnosis to explain her condition. After multiple attempts to have Emerson breathe without a ventilator, along with two surgeries to try to repair her diaphragm, a tracheostomy tube was placed to assist with her breathing. She also required a feeding tube for nutrition. As days turned into months at the hospital, Emerson received extensive support from a variety of therapists at Children’s Colorado.

Finally, at 7 months old, Emerson was able to go home, becoming one of the youngest patients to leave the hospital with 24-hour support from her tracheostomy tube and ventilator.

Since then, months have turned into years. With the help of therapy and care from a variety of specialists at Children’s Colorado, along with her NICU team, Emerson not only beat the odds – she has thrived. 

Emerson’s tracheostomy tube was removed at age 2, and by age 3, she no longer required supplemental oxygen. Although the family suffered another blow when Emerson was diagnosed with Type 1 Diabetes at age 2, after all they had been through, they knew they could handle this challenge, too.

“We are still friends with so many of our nurses and doctors,” said Kara of her gratitude for her daughter’s care. Kara now volunteers on the hospital’s NICU Family Advisory Council and on the phone bank at the annual Alice 105.9 Cares for Kids Radiothon™. It’s her way of giving back to Children’s Colorado, where her husband has devoted his career, where her daughter’s life was saved and where Emerson continues to receive world-class treatment.

Emerson has proved to her family and care team time and time again that she can overcome any obstacle with quiet determination and grit.

Tellingly, Emerson entered a gifted and talented kindergarten class at age 5. Today, this brave, kind and loving little 9-year-old girl loves to read, bike, ski and climb.

Donate to Emerson's fundraising page.

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