Meet Sophia

Sophia’s journey at Nationwide Children’s Hospital began before birth when she was diagnosed with hydrops fetalis, a condition characterized by fluid around her lungs. This diagnosis led her family to the Fetal Medicine department, where a fetal MRI was performed, and a birth plan was established. One month later, at 32 weeks, Sophia was born. Immediately after birth, the skilled neonatology team took Sophia straight to the Memorial Tournament Neonatal Intensive Care Unit (NICU) for intubation and began assessing her condition. Throughout the 207 days that Sophia spent in the NICU, she received many diagnoses and faced both setbacks and triumphs.

Sophia was first diagnosed with kabuki syndrome through genetic testing. Kabuki syndrome is a genetic disorder that affects patients’ facial and bone structures, causing them to be born with skeletal abnormalities. It was also discovered that she had a chylothorax in her left lung, a condition where lymphatic fluid accumulates in the pleural cavity. Additionally, she had a lymphatic disorder, bronchopulmonary dysplasia, and pulmonary hypertension. Despite all of these diagnoses and challenges, Sophia persevered.

Midway through her stay at Nationwide Children’s, NICU nurse Nikki Stover noticed that Sophia’s condition appeared to be worsening. This concern led to the discovery of a pulmonary infection, something that could have become fatal had it not been discovered. As Sophia grew and developed, she was progressively able to go from being constantly intubated to breathing on her own.

Finally, after seven months, Sophia was discharged from the NICU with a GJ-tube for feeding. Due to her previous pulmonary conditions, Sophia had to return to Nationwide Children’s several times for complications from pneumonia. Despite this, she was able to make great progress under the care of the Pulmonary and Complex Care departments. Sophia received occupational, physical, and speech therapies through the Nationwide Children’s home services. These therapies helped Sophia progress to a point where was able to walk using a walker and push herself in a wheelchair.

In 2023, at age 2, Sophia returned to Nationwide Children’s with a severe case of Respiratory Syncytial Virus (RSV). She was put on life support and remained on it for one month. This stay lasted for 103 days. Currently, Sophia is still working to gain back the strength and endurance lost during her battle with RSV. She is in the process of being weaned off her ventilator settings and will hopefully be ventilation-free during waking hours by the end of the summer.

Despite facing enormous obstacles, Sophia is a happy, smiling, curious little girl. She loves music and dancing, reading books, and playing fetch with the family dog. Sophia’s parents are very grateful for the staff at Nationwide Children’s for helping their daughter.

“The doctors, nurses, respiratory therapists, and other staff members have enriched Sophia’s life so much. Because of them, our daughter is alive and thriving,” says Clara, Sophia’s mom.