Care for Mila and Me

By Milena, a Children’s National parent

My daughter Mila is a feisty, caring little girl. She loves music, loves to dance and gives the best hugs.

Mila wasn’t breathing when she was born. It took doctors an hour to revive her. Five days later, Mila flew to Children’s National Hospital where she spent eight months in the Neonatal Intensive Care Unit (NICU). It was the longest eight months of my life.

Compassionate care at Children’s National gave me hope. The nurses were like family. They listened and talked to me. I would always say, “I’m fine, just make her better.” But they made sure I was OK too.

The smallest things made a difference. I remember receiving a gift bag that families put together for others in the NICU. It was nice to know someone on the other side of those doors was thinking of us. Inside was a stone that said “hope.” I kept it in my pocket and held it in my hands whenever I felt stress. This inspired me to create a gift bag for other parents in the NICU. It included a stone that said “believe.” That word always gave us hope.

As a mother of two, I wanted to give 100% to both kids, but I couldn’t. Every day, the team in the NICU asked about my son. On Christmas, there was a gift for both of them from one of the nurses. It warmed my heart that they also thought about Mila’s brother.

Genetic testing revealed two diagnoses for Mila: congenital central hypoventilation syndrome, a disorder that affects her breathing and requires her to sleep with mechanical support, and an intestinal disorder called Hirschsprung disease.

We brought Mila home after almost eight months in the NICU. Follow-up care in the Pediatric Intensive Care Unit (PICU) also was amazing. The team checked in and encouraged me to go for walks in the Bunny Mellon Healing Garden, which always brought me peace.

Mila is now 6 years old and doing well. She continues to receive care from the amazing team at Children’s National since there is still no cure for her condition. It means so much that care and support for my daughter at Children’s National extends to our whole family.
A young patient at Children's National Hospital.

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A young patient at Children's National Hospital.