Partial Anomalous Pulmonary Venous Return: Nadia’s Story
Nadia, 3, is a smart and loving little girl who knows her way around the healthcare system. It could be because she had open-heart surgery last year. Or, maybe it’s that her mother is an emergency medicine physician at Children’s Hospital of Philadelphia (CHOP).
“She is wise and probably overly medically savvy,” Eva Delgado, MD, says of her daughter. “When we had to wait to see the dentist, she calmly explained to all of us, ‘She is with another patient.’”
Heart defect discovered before birth
Eva was 20 weeks pregnant with Nadia, her second child, when a prenatal ultrasound showed an abnormality in the developing baby’s heart.
A follow-up test, a fetal echocardiogram, revealed the baby had a partial anomalous pulmonary venous return (PAPVR), a serious heart defect in which some of the pulmonary veins carry blood from the lungs to the right side of the heart — rather than the left, as is typical.
Choosing cardiac care
Eva and her husband, Kit, set out to find the best cardiac care for their baby. They had great faith in CHOP, but felt reassured when their research and recommendations from others pointed them to Cardiologist Meryl S. Cohen, MD.
After a thorough examination and a review of test results, Dr. Cohen told Eva and Kit that the baby would require heart surgery after birth, but it likely would not be needed immediately. Eva was hoping to delay surgery as long as possible so the baby could grow and get stronger.
Struggling to grow
Within the first six months of Nadia’s life, it was clear she was not growing or developing as well as expected. Nadia’s parents tried everything to help their daughter grow, including:
- Consulting with gastroenterology and genetics
- Giving Nadia acid reflux medication
- Adding coconut milk to Eva’s diet to increase the calories of her breastmilk
- Nursing every two hours for nearly two years
Their efforts helped some, but when Nadia was 16 months old, Dr. Cohen said heart surgery would be needed in the next few months. At that time, Nadia weighed only 18 pounds, and was below the lowest line on the growth curve for her age.
“I knew her heart defect may be the reason she was struggling so much, so that gave me the strength to proceed despite my fear,” Eva says. “I cannot describe how hard it is to be on the parent side of things, to be called ‘mom’ instead of ‘doctor’ … to be totally out of control.”
Gaining by leaps and bounds
In July 2017, when Nadia was 21 months old, she underwent surgery at CHOP to repair the abnormal connections between the pulmonary veins and other veins so blood could only flow into the left atrium.
The surgery went smoothly and Nadia was recovering well, but Eva remembers being concerned that her normally chatty little girl was unusually quiet the day after surgery. The toddler didn’t cry or complain, but just didn’t seem quite like herself – at least not until Nadia’s grandfather pulled out his phone to show her pictures of his dogs. Nadia took the phone from him and called the dogs by name.
“Her little voice was back and so was her love of animals! I sobbed and so did everyone in my family,” Eva says. “After that, I knew she would grow, get faster, be better, and I felt so much gratitude for everyone and everything.”
Nadia spent three days in the hospital recovering. Back home, she thrived. Within six weeks of surgery, she had gained 4 pounds. Eva remembers her biggest concern at the time was that her daughter was doing too much post-surgery.
Wise beyond her years
Nadia continues to be an active kid. She takes dance lessons and plays soccer. And when she runs, her mother can barely keep up. Nadia is a bit shy with people she doesn’t know, but enjoys acting silly with her family — and she absolutely loves her big sister.
In many ways, Nadia is a normal preschooler. However, at just 3 years old, Nadia’s grasp of the world around her is well beyond her years.
“When I pick her up at daycare, before I can ask her how her day was, she says, ‘So, Mommy, how was work today?’” Eva says.