Twenty years ago Sean Donahue, MD, PhD, operated on a 3-month-old boy at Monroe Carell Jr. Children’s Hospital at Vanderbilt to remove congenital cataracts and allow the child to grow up with normal vision.
Earlier this summer, Donahue heard from the boy, Jai Ailawadi, now a rising junior at Georgetown University, who happened to be in Nashville for an internship with a health care private equity firm.
“You did surgery on me 20 years ago,” Ailawadi wrote. “You have changed my life in more ways than I can express in an email. I have a lot of gratitude to express toward you.
“You made it possible for me to run triathlons, to play soccer and lacrosse, to swim, to do all these things that most kids born with cataracts don’t have the opportunity to do. I would love to meet you at some point because you’ve had an incredible impact on my life and my family’s life.”
“He would have been essentially blind”
Ailawadi is one of the success stories of infants born with cataracts (many are discovered too late to restore vision), and he told Donahue that his family’s life was also impacted.
“I don’t think my parents, my older brother and my little brother would have grown up doing the same things if I had ended up with 20/40 vision, if I were not able to see.”
Ailawadi now has 20/20 vision in his right eye and 20/25 vision in his left with the help of the gas permeable contact lenses he must wear every day. He wears reading glasses and has developed glaucoma, a result of the cataract removal, but it is managed with drops.
“It was a spectacular result, and had he not been treated he would not have had usable vision and would have been essentially blind.”
“His letter made me realize what an impact we can have on patients and the families that we treat,” said Donahue, Sam and Darthea Coleman Professor of Ophthalmology and Visual Sciences, vice chair for Clinical Affairs, executive ambulatory medical director for the Ophthalmology Patient Care Center at Vanderbilt University Medical Center, and chief of the Pediatric Ophthalmology Service.
About 1 in 10,000 infants are born with cataracts in one or both eyes, Donahue said. They can be hereditary, the result of a syndrome, or they can happen spontaneously.
“Either way, you have to try to figure out what caused them and clear the cataract in about the first three months, or the child will never develop good vision in either eye,” Donahue said.
Unless you know what to look for, cataracts can be found too late
In Ailawadi’s case, it was a fortuitous first visit with his uncle, Sandeep Kakaria, MD, an ophthalmologist, which set the wheels in motion. Kakaria told his mother, Radhika Ailawadi, MD, a gynecologist on the faculty at Vanderbilt University Medical Center, that he suspected cataracts, and a trip to the pediatrician confirmed that.
Over the next two weeks at Monroe Carell Jr. Children’s Hospital at Vanderbilt, Donahue removed both cataracts.
“Unless you know what to look for, parents often won’t see the cataracts until 3 to 4 months old when the eyes start shaking (nystagmus),” Donahue said. “At that point, it’s too late.”
“It’s a devastating diagnosis that, for Jai, we were able to treat.”
“Probably better than 50% of the time, despite everything we do, kids won’t end up with usable vision,” he said. “And probably 10% or less will have legal driving vision even in one eye because the cataracts are caught late; there’s a delay in getting in to see someone; or the family doesn’t follow up.”
When cataracts, located in the lens of the eye, are removed in infancy, the eyes can’t focus, Donahue said. “In the removal in an adult, you put a lens implant in. In children you have to put a contact lens on the surface of the eye.”
As the child grows, the contact lenses need frequent adjustments, and parents have to be closely involved in making sure the contact lenses stay in place and they’re managed properly.
Once the eye is large and mature enough, a secondary lens can be implanted, but Ailawadi has chosen not to do that because he does so well with contacts. “He doesn’t want to open up that lens again because of risk of infection, and it can make the glaucoma worse,” Donahue said.
Donahue continued to see Ailawadi for follow-up visits for three years after the surgery until the family relocated to Pennsylvania in 2007, and Donahue referred him to Monte Mills, MD, a colleague at Children’s Hospital of Philadelphia.
Meeting for dinner
Donahue received Christmas cards from Ailawadi’s parents for a few years, but he had not heard from them in the last decade. Until the email exchange in June when Donahue and Ailawadi agreed to meet for dinner.
“At dinner I picked his brain for the first 30 minutes: What if this happened? What if that happened? What are the outcomes traditionally with cataract patients?” Ailawadi said.
“One thing that stuck with me is he said if a kid isn’t diagnosed with cataracts until about three months after birth, typically they will either never see again or be 20/40 at best. I asked him, ‘I’m obviously not 20/40, why is that?’ And he told me that he couldn’t take all the credit, that my mom brought me for 15 visits in the first year alone. He was saying my mom deserved part of the credit, that it definitely was a joint effort between the two of them.
“Dr. Donahue has seen so many pediatric patients over the years, and I’m sure he’s heard from parents who are grateful, but I think it’s different coming from a patient who has lived through so many different experiences, because of him,” Ailawadi said.
“Jai clearly has a really good understanding of what could have happened,” Donahue said.
“He was raised by his parents with a grateful heart and a grateful spirit, and it was just a real pleasure to be able to talk to him.”
“His is a wonderful story that highlights our ability to operate on kids and provide long-term follow-up. [Meeting him] was a highlight in my career and makes me realize how fortunate I am to participate in this and be able to change a life.”
