Melaina's Story

"Now she's the loudest in the house," Mary says about her happy and energetic 2-year-old daughter. But Melaina's story didn’t start out this way. An extremely rare combination of lung and heart conditions, nearly one in a million, kept her in a cardiac intensive care unit fighting for her life from the day she was born. Her family feared her story might be quite short, until her family met the Advanced Lung Disease Program team at Children's National.

Baby Melaina needed a ventilator constantly just to keep breathing.

A very uncommon combination of conditions (scimitar syndrome and hypoplastic right lung and malfunctioning cilia – the tiny hairs that line the airways) made it so only one of Melaina's lungs worked. And though that single lung was working hard, an extremely rare combination of other conditions including dextrocardia, where the heart sits opposite where it should be, and patent ductus arteriosus (PDA) – a blood vessel that normally closes shortly after birth but remained open in Melaina's case –increased the blood pressure in Melaina's lung arteries to dangerous levels causing a condition known as pulmonary hypertension.

She received a steady, heavy flow of oxygen – 5-10 liters per minute – just to stay alive at the hospital where she was born. Every time Mary held her, Melaina's oxygen levels dropped. Nurses would whisk her back to her incubator. Mary remembers doctors telling her family more than once to say their goodbyes to their little girl.

A life changing move to Washington, D.C.

Then, life intervened. Melaina's dad was re-assigned from Texas to Washington, D.C., for his military job. Melaina received a medical transfer to Children's National as the family prepared to move.

Less than 12 hours after arriving at the Cardiac Intensive Care Unit (CICU) at Children's National, Michael Tsifansky, MD, director of the Advanced Lung Disease Program, took over Melaina's care. With his unique dual training in both pulmonology and cardiac critical care, he has treated more children with these conditions than nearly anyone else in the country. But even he had never seen one with all these conditions combined.

"We had to strike a delicate balance and highly personalize her care based on her unique anatomy in order to keep her alive," he recalled. "It's definitely science, but there's an art to it as well, especially given her small size, delicate condition and medical complexity."

Within that first day, Dr. Tsifansky recognized that the treatment plan Melaina arrived with was giving her working lung too much blood flow to handle. She needed a lot fewer medications, and a few different ones. She also needed less oxygen (despite turning blue when oxygen was first removed). In the first two weeks, they were able to successfully reduce her medications by 10. In addition, Joshua Kanter, MD, and Tacy Downing, MD, pediatric interventional cardiologists, used a minimally-invasive catheter-based technique to close her PDA.

Hope for the first time.

"I was given a death sentence when she was born. But I remember walking into her room at Children's National and she was looking at me, alert, and on minimal oxygen," Mary said. "For the first time ever, I looked at her and thought, 'Oh my God, we might make it out of here.'"

Over the next six weeks, Dr. Tsifansky, Angela Burd, DNP, nurse practitioner for the Advanced Lung Disease Program, and the rest of the clinical team continued to build Melaina's strength bit by bit. Mary remembers holding her for the first time without intubation, and after that worked, she "held her for days."

Melaina grew strong enough to go home for the first time in her life.

"The team made sure we had everything we needed to feel safe having her home with us. They took all my phone calls and talked through my every worry," Mary said.

They followed her closely, with regular check-ins to make sure she stayed on the right track. That process began nearly 18 months ago. She's continued to improve, with only occasional visits to the clinic ever since.

"Two Fancy" and loving life.

Mary wants other families facing similar challenges to know that when it comes to their child's life, they should keep asking questions, even if medical knowledge is new to them, like it was to her. "I'm grateful to God for [giving us] the Advanced Lung Disease team, who used their knowledge and wisdom to save Melaina's life," she said.

The baby that everyone thought would live her life on a ventilator is a free-ranging, lively 2-year-old, bossing around her two older brothers like any little sister should. The family went all out for Melaina's second birthday, choosing a "Two Fancy" theme where all the guests wore their best outfits, while Melaina was decked out in a tiara, jewels and a big fluffy dress. It was the first of many birthdays the family will now celebrate together, something they never thought they'd be able to do.

While Melaina may face other medical hurdles as she grows older, the Advanced Lung Disease Program will be there for her every step of the way. Dr. Tsifansky and the team are confident she'll be able to live every moment to its fullest from here on out.