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patient story

Diya Shah

the tenderhearted twin

In 2005, Pranita and Amrish Shah found out they were pregnant with twins. Pranita’s pregnancy was considered high-risk, so she was required to have monthly fetal echocardiograms at Dayton Children’s to make sure everything was okay with the babies. During her sixth month of pregnancy, they found out that they would be bringing two baby girls into their family. However, the ultrasound suggested that one of the girls had a problem with her heart. The family was therefore referred to the Dayton Children’s Hospital for a fetal echocardiogram and consultation with the cardiologist.

On February 10, 2006, Diya and Siya were born, and it was determined that Diya had the identified heart condition. Diya was transferred to Dayton Children’s to be evaluated and monitored by a pediatric cardiologist. 

Luby Abdurrahman, MD, division chief of cardiology and head of fetal cardiology at Dayton Children’s, performed an echocardiogram on Diya and confirmed she had a condition known as Tetralogy of Fallot. 

Tetralogy of Fallot is a congenital heart condition where four related heart defects change the way blood flows to the lungs and through the heart. Tetralogy of Fallot is repaired through open-heart surgery soon after birth or later in infancy. Some infants need more than one heart surgery. 

Few children need heart surgery or heart procedures. Rather than provide services that would be done infrequently at Dayton Children’s, we partner with other pediatric hospitals because studies have shown that centers that perform a higher number of surgeries and procedures also have the best results. 

After spending three days in the neonatal intensive care unit at Dayton Children’s, Diya was transferred to a partnering hospital for her surgery. During Diya’s open-heart surgery, her cardiovascular surgical team placed a shunt to create an additional pathway for blood to travel to the lungs to get oxygen. After surgery, Diya’s condition began to improve, but she continued to have difficulty with feeding which, gradually improved over the next month in the hospital.

Pranita was unable to travel with Diya for her surgery since she was recovering from delivery and taking care of Diya’s twin sister, Siya. To encourage Diya’s feeding, Pranita would pump breast milk and Amrish would take it to the hospital where he would feed Diya with a bottle. Feeding continued to be a struggle so Diya’s care team put her on a feeding tube to ensure proper nutrients were being received.  

After a month of hospitalization, Amrish and Pranita were ready to bring their baby home. Diya’s care team showed her parents how to manage the feeding tube at home which allowed Diya to be discharged and reunited with her twin sister. Within days of being home, Diya settled in and started taking a bottle from Pranita and eventually got to a point where she no longer needed the feeding tube. 

When Diya was two years old, she was finally healthy and strong enough to have the shunt removed and her valve repaired. Once again, Diya and her family traveled to our partnering pediatric hospital where her cardiovascular surgeon replaced the valve and patched the hole in her heart. This time, she was only in the hospital for about 2 weeks. 

All of Diya’s follow-up care has been with Dr. Abdurrahman at Dayton Children’s. She now sees Dr. Abdurrahman annually for cardiac check-ups. At each visit, Diya has an electrocardiogram and echocardiogram to make sure her heart is still beating at a normal rate and that her heart’s chambers and valves are pumping blood through her heart.

“We have grown exceptionally close to Dr. Abdurrahman over the years. She has been a part of our lives since before the girls were born,” said Amrish. “She not only cares for Diya’s heart condition, but she cares about the whole family.”  

It is still possible that in time Diya will outgrow her valve and need surgery to have it replaced. But for now, her heart is healthy and strong! In fact, you would never know Diya has a heart condition and has undergone two surgeries. She and her sister actively participate in tennis and are among the top of their class at school. 

All her time spent in hospitals has given Diya a genuine appreciation for pediatric health care. She hopes one day to become a pediatrician and provide the same level of care and compassion to her patients as she has received from Dr. Abdurrahman and the rest of her care team.