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Riya

Sep 15, 2023, 8:47:50 AM CDT

Riya’s Legacy: So Every NICU Baby Gets to Go Home

Alpi had a whole list of names for the baby girl she was expecting. Her husband, Mitesh, only liked one.  

“Riya means graceful and singer,” he said. “And it was through the grace of God that we even got to meet her. She was only with us for 137 days, but her will to live and to fight makes us proud.”

Riya was born extremely premature. Despite her tenacity, her family’s love, and the expert care of team members at Children’s Health℠, she passed away at four and a half months old. Now, her parents are on a mission: Raise $75,000 in their daughter's honor to support research and care so every premature baby gets to go home healthy.

“Life is a gift, and we don’t take that lightly anymore,” Mitesh said. “Every day, Riya gives us purpose. We are on this mission so she will be something bigger than life and help other babies in her memory.”  

100 grams away from a world record 

Five months into Alpi’s pregnancy, her blood pressure spiked. She was experiencing a complication called preeclampsia.  

“At that point we knew the baby was coming early, we just didn’t know how early,” Alpi says. “My doctor tried one medication, then another, but nothing helped.”  

Her blood pressure was dangerously high, and the baby was coming. Riya was born at just 25 weeks and three days. She weighed less than a pound. 

“The world record for the smallest baby that ever survived was around 250 grams, and Riya was just 100 grams above that,” Mitesh said.  

She was transferred to the Level IV Neonatal Intensive Care Unit (NICU) at Children’s Health when she needed more complex care than her local NICU could provide.  

“As a parent, it breaks your heart because you want to do anything and everything for your kid, but we felt helpless," Mitesh said.  

Getting bigger every day 

The days passed slowly, and Riya became more stable. Her doctors, nurses, respiratory therapists, and the entire care team taught Alpi and Mitesh everything they needed to know — how to feed a baby this small, how to closely monitor her tiny lungs, and how despite everything, Riya’s brain was working well. Right away, three nurses, Jenni Stocks, Meagan Compton, and Reagan Miller, stepped up to lead her care.  

“They hadn’t even met us or Riya, they just knew she was the smallest baby in the NICU and wanted to take care of her,” Alpi said. “She eventually had child life, physical therapy, occupational therapy and music therapy. The care team supported us emotionally too, sometimes talking to us for 30 minutes or an hour just to make sure we understood everything that was going on.”  

Every day, Riya got a little bigger. As the weeks passed, she started smiling, wiggling her arms and legs, and looking around the room.  

“We were overjoyed when we finally got to hold her,” Alpi says. “At about three-and-a-half-months-old, Sushmita Yallapragada, M.D., gave us the much-awaited news that Riya was doing well enough to be transferred into a less intensive care unit.” 

Alpi and Mitesh shared Riya’s progress with their family and started working on the nursery to prepare to bring her home. But progress halted when the blood pressure in her lungs spiked, and she was diagnosed with a condition called pulmonary hypertension.  

“Children’s Health did everything possible. We did everything possible, and we hope Riya knows that,” Mitesh said.  

Riya’s Room 

Riya passed away in the spring of 2021. Soon after, Alpi and Mitesh got a message from one of her doctors, Shamaila Gill, M.D. She said she was passing by Riya’s room and thinking of them.  

That got the couple thinking: What if they could honor Riya’s legacy by supporting doctors and scientists working to improve survivorship for babies like Riya?  

That sparked their new mission.  

“We asked people to make a donation instead of sending us things to show their love and support,” Alpi said. “Our goal is $75,000, and we’re more than halfway there. So many people have reached out, telling us our daughter is a hero or sharing their own stories about premature babies.” 

Alpi and Mitesh continue to rally their community around this cause — all while balancing work and caring for their two-month-old and ​​​​11-month-old daughters who they had through surrogacy.   

“Both of our girls will grow up knowing their older sister’s heroic journey and her fighting spirit,​​” said Mitesh. 

“We still keep in touch with members of Riya’s care team, sharing updates of our family,” Alpi says. “They told us we were the talk of the unit when they found out we had a baby through surrogacy.” 

Alpi and Mitesh hope their fundraising efforts will advance research and care for NICU babies, particularly those with pulmonary hypertension.  

“We were able to see Riya for 137 days because of the hard work of doctors, researchers and fundraisers in the past. Without them, she wouldn't have had a chance,” Mitesh said. “We want to thank every parent, charity and doctor that has put in hard work, time and money to the NICU.”  

“We miss her so much and there isn’t a day that goes by where we don’t think of her,” Alpi said. “Our hope is that one day, all NICU babies get to go home happy and healthy.”  

Help Riya’s family raise $75,000 for NICU research and care! 

Your gifts will support physicians, nurses and scientists who are finding ways to improve care for premature babies. Alpi and Mitesh believe that Riya's greatest legacy will be to help other premature babies live their healthiest lives and for families to be together. Scan the QR code to learn more and donate. 

     ​​ 

 

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