A mother's intuition: Seeking answers for Oliver
“It started when he was probably just shy of three months old,” Katy said. “He was having lots of feeding issues, not wanting to eat. I'd pick him up from daycare and they'd say, ‘Well, he had four ounces today.’”
Katy said they visited his primary care doctor and the ER often, knowing something was going on with her son, but not being able to pinpoint exactly what.
“It finally took admitting us to the children's hospital and they said, ‘We believe you that something is wrong. Have his eyes always had that whiteness to them?’” Katy said.
The diagnosis that changed everything
They were transferred to another children’s hospital where Oliver was finally diagnosed with glaucoma. This began Oliver’s journey to restored vision, including roughly a dozen surgeries for glaucoma.
“We think one of the side effects of those surgeries was repeated trauma to the cornea,” Katy said. “They started to go cloudy, and we kept worrying that his pressures were going up and his glaucoma wasn’t well controlled.”
Oliver’s vision deteriorated, and by the time he was a toddler, his eyes had clouded to the point where doctors couldn’t see in, leaving his parents uncertain about what, if anything, Oliver could see.
A new hope: Meeting Dr. Saeed
Oliver’s vision continued to worsen until Katy and her husband, Juan, were referred to Hajirah Saeed, MD, MPH, a cornea specialist in Chicago, who offered new hope in the form of cornea transplants.
“That's scary to think about for anything, but especially for your kid,” Katy said. “And when she said that it was a little bit hard to digest.”
Although the prospect of a cornea transplant was daunting, Katy remembers asking Dr. Saeed what she would do if it were her own child.
“I can’t tell you what to do,” Dr. Saeed replied, “but I can tell you as a mom, I would move forward.”
And so, they did.
The gift of sight: Oliver’s first cornea transplant
“When I found out their age, my heart broke for those parents,” she said. “It's hard because I struggle with knowing that that's someone that lost their child, their loved one. I can't imagine that, but I hope that they can take comfort in knowing that they gave my child his vision back. He can read, he's learning to write–that's a huge gift.”
Before his first transplant, Oliver’s eyes were completely clouded. Oliver’s visual acuity—which is the clarity of someone’s vision—was 20/400, meaning that Oliver could see at 20 feet what someone with normal vision could see at 400 feet. This is a severe level of vision impairment that is considered legally blind.
Oliver’s first transplant marked the beginning of a miraculous transformation. When the bandage came off, Katy felt overwhelmed seeing her son truly looking back at her for the first time.
Seeing the world anew: Oliver's miraculous progress
Since then, his vision has improved dramatically. From barely seeing shapes and shadows, Oliver’s vision has now progressed to 22/50—an outcome beyond what they’d dared hope.
“As he regains more and more of his sight, his confidence just soars,” Katy said. “He used to have a really hard time when we would be out in a crowd. He would be right next to me; I called him Velcro kid. Now he's really finding his independence and just exploring the world.”
Prior to his transplants, Oliver would hold an object to his face and be able to see out of a very small corner of his eye. Now, when he looks at something, he holds it a normal distance from his face.
Katy vividly remembers seeing this transformation on a recent trip to the zoo, where Oliver, unprompted, pointed out the colors of the macaws and noticed an animal moving in and out of shadows.
Rediscovering life: From zoo visits to soccer fields
“We went to the zoo for my birthday, and it was on my birthday that he said, ‘Oh mom, look at the macaws,’ and I never really thought that would be something that I'd be able to share with him,” Katy said.
Oliver’s healing journey has had its challenges, but for Katy, seeing him grow and be an active, fun-loving kid is miraculous. Oliver has a white cane and is learning how to use it, but he doesn’t need it in most situations.
“He plays soccer, which is amazing,” Katy said. “He keeps up with the other kids, which is huge. One of his coaches said he had no idea that he had a visual impairment, he just thought he was a little bit clumsy.”
The power of donation: A message to donor families
“First and foremost, I'm so sorry,” she said. “It is a little bittersweet that they had to lose someone so that he could gain such a great gift. But I would want them to know that their loved one lives on through a silly, kind, curious little boy. Their loved one is getting to experience the world through a child's eyes, which is so cool.”
