December 2, 2024 — December is the month when many families focus on gifts. For an Indiana transplant family, December is the month to celebrate the ultimate gift — the gift of life. Mary Hannah and Kalyan Gorantla are stepping into December focusing on their son’s fifth birthday on December 2nd and his two-year transplant anniversary on December 6th. They are waiting excitedly to watch him enjoy the sights and sounds of the season this month, all thanks to receiving a new kidney and a second chance at life.
In August 2019, Mary and Kalyan were excited to learn they were pregnant with their first child. They relocated from Houston, where Kalyan had finished a one-year surgical fellowship, to Indianapolis where he had accepted a job with a private practice surgery group at St. Vincent’s Hospital. Mary left her position as a corporate attorney at a Houston law firm and started working for the Indiana Board of Education. Both Kalyan and Mary had completed many years of schooling, had successfully worked in their professions and were excited to be settling in the Midwest for the next chapter in their growing family’s story.
But joy and anticipation quickly turned to apprehension when a 20-week anatomy scan indicated their baby had renal, bladder and lung abnormalities. The baby’s right lung had a mass, a CPAM – Congenital Pulmonary Airway Malformation. In October 2019 toward the end of Mary’s pregnancy, the baby was losing amniotic fluid. It was determined to be a risky pregnancy; therefore, each week tests were run to monitor their baby in utero. On December 2, 2019, Mary had a scheduled Cesarean section at 35 weeks of gestation with the NICU team from St. Vincent’s Women’s present. These were very scary days for Mary and Kalyan who named their baby boy, Kiran, which means ‘Ray of Light.’ On December 3rd when his ability to survive was in peril, they saw their first glimpse of Kiran’s fighting spirit and his bright light. Three days later, while still intubated, the tiny infant underwent dialysis catheter surgery so the team could begin manual peritoneal dialysis. From December 2019 to mid-March 2020, Kiran had four more surgeries including dialysis catheter replacement and G-tube placement. Mary and Kalyan said, “There certainly were many complications, and things quickly got alarming. But Kiran defied the odds.”
On March 12, 2020, Mary and Kalyan breathed a tiny sigh of relief when Kiran was discharged from the NICU and placed on home dialysis. At this point, he was primarily being fed via G-tube; they both felt they could manage the infant’s care at home. Two days later, the COVID-19 pandemic shut literally everything down. Mary said, “This meant all the resources and help we had been lining up while we were in the NICU were gone. No home nursing help. No family help. Nothing. I quit my job, and it was just me and Kiran. Mixing special renal feeds, pumping round the clock, managing a seemingly endless amount of vomit, trying desperately to get Kiran to eat something, anything, by mouth and finishing the feed with his G-tube pump. Managing dialysis that wasn’t working well with alarms going off all night. And setting up a basement bedroom in case Kalyan caught COVID-19 while practicing medicine and had to quarantine. To summarize, life with our newborn was ROUGH.”
From March 2020 through September 2020, they were managing a medically complicated baby and dialysis during a pandemic that complicated every aspect of his care. Kiran experienced typical dialysis struggles, had to have lots of shots, lab work, frequent hospitalizations and more surgeries and procedures. Things started to improve for Kiran, and at the beginning of 2021, the family began researching a possible kidney transplant for their baby boy. They were eventually referred to Cincinnati Children’s Hospital Medical Center, which was about 120 miles from their home. When Kiran was born with kidney problems, a high school friend connected Mary with another person from their high school days whose son had also received a kidney transplant at Cincinnati Children’s. This friend introduced Mary to a kidney mom in the Indianapolis area whose son got his new kidney at Cincinnati Children’s as well, and they became close friends. These kidney parent connections were vital as the Gorantlas started to navigate Kiran’s next steps. Both of these kidney moms suggested Mary and Kalyan reach out to the Children’s Organ Transplant Association (COTA) at the outset of their journey to see how the organization might be able to help alleviate some of the stress associated with their son’s medical situation.
On July 6, 2021, Mary sent a Get Started (COTAGetStarted.org) notification to COTA’s headquarters requesting more information. Later that day, COTA’s Family Outreach Specialist placed a call to Mary who was able to provide details of their family’s transplant journey to date. This included the connection with two COTA moms who encouraged her to reach out to learn more.
COTA uniquely understands that parents who care for a child or young adult before, during and after a life-saving transplant have enough to deal with; therefore, COTA’s model shifts the responsibility for fundraising to a team of trained volunteers. COTA is a 501(c)3 charity so all contributions are tax deductible to the fullest extent of the law, and funds are available for a lifetime of transplant-related expenses.
On that first call, Mary explained their situation and some of their financial concerns including specific transplant-related expenses (travel, meals, lodging and parking) they would incur if Kiran’s kidney transplant was performed in Cincinnati. This included their concern regarding possible loss of income if Kalyan was able to be their son’s living donor. On July 21, 2021, the family’s signed agreement arrived at COTA’s headquarters … Mary and Kalyan officially became part of the COTA Family, and Kiran became a COTA Kid. In early September, a COTA fundraising specialist trained their group of volunteers via telephone due to the pandemic and so fundraising for transplant-related expenses could begin immediately. The COTA staff member shared information about COTA’s fundraising process, fundraising templates, guidance and support, and the no-cost website they would be provided. COTA for Kiran was launched, and the website was immediately available for online donations to help with transplant-related expenses.
On November 5, 2021, Mary posted this update on the COTA-provided website: “Kiran was a HUGE trooper for his transplant evaluation at Cincinnati Children’s Hospital. Best car traveler and his first overnight trip. It is hard to pack light with cases of dialysis fluid, his machine and g tube supplies. We met with cardiology, pulmonary, nephrology, a transplant pharmacist and the list goes on. More tests are scheduled for next month. After that, the whole pediatric transplant team meets to decide whether to approve him. Kiran will be deferred because he needs a lung surgery prior to a kidney transplant. Hopefully, he’ll be approved so we can start looking for living donors.”
Throughout the fall months of 2021, COTA for Kiran fundraising was taking off including a Turkey Trot 5K Walk/Run on Thanksgiving Day. On December 2nd, Kiran’s second birthday, photos that chronicled his journey to date were uploaded to the team’s COTA-dedicated social media sites. One particular photo of Mary holding two-week-old Kiran for the first time was extremely powerful. That photo required three nurses to move him with all his leads, picc line and dialysis line and place the baby in his mother’s arms. It was such a special moment and many COTA for Kiran supporters responded with donations to COTA and well wishes. In mid-December, COTA for Kiran volunteers were thrilled to announce $50,000 of the $75,000 goal had already been raised. It was a powerful and uplifting update for the Gorantlas, who felt many arms surrounding them and holding them up during difficult days.
A tangible example of COTA’s support, according to Mary, was directly related to the medical supply shortages throughout the pandemic. She said, “We were doing various urology and nephrology tests and procedures to help Kiran be approved for transplant, and specifically trying to ‘stretch’ his bladder through the installation of sterile saline, to allow for a safe kidney transplant. Unfortunately for us, there was a saline shortage. We frequently were on the phone searching for any hospital or medical supply company, or even Amazon, to find saline, and frequently we had to pick it up that day and pay cash. Without COTA helping to cover the cost of bladder cycling supplies it would have made a tight monthly income even tighter. COTA allowed us to avoid going into debt to pay for medical supplies that were very necessary to prepare Kiran for transplant.”
On December 28, 2021, Mary posted: “It’s been another crazy year of COVID-19, but our lives have also been full of dialysis, new milestones and some big next steps for Kiran and our family. Kiran just turned two years old and he continues to amaze us every day with his big strides and joyful personality, despite having almost no kidney function. This leads me to our biggest news: We have been cleared to begin evaluating living donors. Both of us (Kalyan and Mary) have started the process of seeing if either of us is a match. If you, or someone you know, is interested in seeing if you’re a match please visit Cincinnati Children’s donor website. There is a living donor coordinator who handles all contact with potential donors and we have zero contact with them, so we will never know who volunteers. We still have one major hurdle before transplant and that is the mass in his right lung. Kiran will have to have a portion of his lung removed before transplant to avoid any future issues once he’s on immunosuppressant medications.
While we do not like to ask people for money, it has given us huge peace of mind to see the COTA for Kiran campaign already reach 60% of the goal. We are humbled by the support and so very grateful for your gifts. They allow us to travel this journey with greater ease and peace.”
On January 24, 2022, Kiran and his family arrived at Cincinnati Children’s to prepare for his lung surgery, which he underwent two days later on January 26th. Mary and Kalyan asked their many followers and supporters to pray for good outcomes from the anticipated five-hour surgery. They posted an update letting everyone know the team had to open his chest (tried to do it laparoscopically first) to remove the upper lobe of his right lung. They were waiting to hear if another lobe would have to be removed. Luckily, they posted a little later, the surgery was done; only one lung lobe was removed — better news than expected. On February 13th, Kiran, Mary and Kalyan returned to their Indiana home for his further recovery. The search for a living kidney donor was now their number one priority.
On April 6, 2022, Mary posted: “We received the heartbreaking news that Kalyan and I both have multiple arteries going to our kidneys, so despite being matches with Kiran, neither of us can donate. It was a tough punch to take. He is connected to his machine 13 hours every day, and his kidney disease delays his development, speaking and eating. He really needs a working kidney. We are moving forward and hoping to find a living donor for Kiran. If you are so moved to see if you’re a match, we would be forever grateful — you would change a lot of lives.”
Seven months later in October, Mary shared a heartwarming update that Kiran would be receiving a living kidney donor transplant from her law school friend, Rachael, in early December.
Both she and Kalyan were unable to adequately express their gratitude, which they described as “enormous and profound.” They recognized Rachael would be saving their son’s life, which was the best gift they would receive this December, or for many Decembers to come.
Living donor, Rachael, posted: “Barring any unexpected setback, I will be a living kidney donor on December 6th. I will be donating to my friend Mary’s amazing little boy, Kiran. He is such a fighter, and prayers for a safe transplant and recovery for both of us would be appreciated. I have gone back and forth about sharing this news, but ultimately decided to do so to help spread the word about living kidney donation. I started this process last January and I would be happy to talk to anyone about my experience with testing, and soon, the recovery process. So many people desperately need a kidney. Yes, there will be some pain, some risk and some minor lifestyle changes, but I will have a normal life expectancy, can have children, etc. I am a good match for Kiran and I am healthy so donation does not pose extra risks to me.
On December 6, 2022, Mary posted: “Rachael’s kidney is hooked up to Kiran and already making urine! Go kidney, go! Rachael is out of surgery, doing well and in recovery. They’re taking out Kiran’s dialysis catheter and the urologist will hook up the ureter to the bladder. What a wild ride! Lots of happy tears being shed at Cincinnati today!
On December 29, 2022, Mary posted: “Belated Merry Christmas! Kiran was finally discharged. We’ve been out of the hospital a little over a week and it’s been incredible. It truly is like a light was turned on inside him. He is so active! He’s saying more words and sounds and is all of a sudden counting to three and eating copious amounts of Goldfish crackers and Oreos. The change is incredible. We are forever grateful to Rachael for this gift. She has truly given him a new life.”
This December, two years post-transplant, looking at their five-year-old ‘Ray of Light’ amidst the sights and sounds of the holidays, Mary and Kaylan are very grateful for many things, including the gift of COTA.
Mary and Kalyan shared, “COTA truly took a huge weight off our shoulders during an incredibly stressful time. We brought Kiran home from the NICU on dialysis right before the pandemic shut down the country and very unexpectedly went from a double income household to a single income one. Money was tight; it was a scary time. Not to mention worrying about Kiran’s father, a surgeon, bringing home COVID-19 to a new baby on dialysis.”
“Having COTA on our side allowed us to breathe a little easier, knowing whatever happened nothing would impact Kiran’s medical care or kidney transplant. COTA’s staff trained and supported our volunteers and were always available to answer questions about fundraising strategies and tactics. Team COTA has been incredibly supportive and responsive with reallocations for transplant-related expenses. Simply knowing we would be able to cover household bills while missing work and living in a different city for Kiran’s transplant and recovery was a huge relief.”
“Also, there were many medications and miscellaneous medical supplies insurance did not cover, or did not do so right away. This meant we frequently had to pay out-of-pocket for items that would eventually be covered by insurance but impacted our home budget. Again, COTA was there for us helping with unexpected transplant-related expenses and allowing us to avoid taking on medical debt to cover medications and medical supplies.”
There is no way to know what the future holds for this family, especially with an immunosuppressed, kidney-transplanted toddler. Mary and Kalyan are grateful COTA will be there for a second or even a possible third kidney transplant. They are thankful that, thanks to COTA, transplant-related expenses will not be a hurdle.
This December, the Gorantla household will likely be filled with celebrations, including Kiran’s 5th birthday, and lots of holiday joy. Kiran will be playing with his many vehicles and building with any type of materials and blocks he can find. It is possible a favorite Toy Story character will be heard in the background saying, “To infinity, and beyond.” Perfect words for a little boy … a ray of light … who brightens every room he enters seeking his next adventure. For Mary and Kalyan, being able to watch Kiran reaching for the stars, soaking up the season and enjoying all its trimmings is the only holiday gift they will need for many years to come.
Merry Christmas and Happy New Year, Gorantla Family from your COTA Family!
