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Navigating Unknown Challenges: One family’s journey through congenital cataracts, glaucoma and PHPV

mott blog - lillian knowlesOur darling daughter, Lilliann June, was nine days past her due date when she was born on September 25, 2013. It was a long labor — 48 hours — but well worth the wait. While we were in the hospital, Ryan noticed that her left eye was red. The pediatrician wasn’t alarmed, but had the hospital’s ophthalmologist take a look. He mentioned that she may have an issue with cataracts and glaucoma. We’d only heard those words used for older people, so we didn’t pay too much attention, until we were referred to another ophthalmologist for further examination.

We live in Three Rivers, Mich., and there’s no pediatric ophthalmologist here so we went to a regular ophthalmologist who did his best to examine a 5-day-old child. He decided we needed to see a specialist and sent us immediately to Ann Arbor and the specialists at the Kellogg Eye Center. Making a two-hour drive wasn’t at the top of our list of things we wanted to do with a newborn, but we jumped in the car and headed out.

mott blog - lillian knowles 3That’s when we had our first appointment with Dr. Bohnsack. There aren’t words strong enough to describe how phenomenal she is. She was immediately comfortable with Lillie, reassured us and talked to us in a way we could understand. There was blood in both of Lillie’s eyes, which is not uncommon. She gave us drops to help clear that up. We went back four times to have Lillie checked. Everything was going well and we were scheduled for one last appointment where we expected to get the all clear. Unfortunately, that didn’t happen. At that appointment, Dr. Bohnsack diagnosed her with a congenital cataract.

At 6 weeks old, Lillie had surgery to remove the cataract. The surgery went well, but we found out that Lillie also had a condition called persistent hyperplastic primary vitreous (PHPV), which basically meant her left eye did not fully develop. We then scheduled Lillie for the second surgery of her young life. She had a vitrectomy during which Dr. Besirli (another amazing doctor) removed the fluid from her eye and replaced it. Before the procedure, she had so much blood in her eye, that it was impossible to fully examine her retina.  We left that surgery pretty down and unsure of what was to come. The following week, we got the good news that her retina was good, which meant she’d have vision in that eye.

congenital cataractAt 7 weeks old, we had the pleasure of learning how to put a contact lens in our daughter’s eye. It’s about as hard as you imagine it to be. She needs the lens to replace her natural lens that was removed during the cataract surgery. She was later diagnosed with glaucoma. So Lillie’s daily regimen now requires putting in and taking out her contact lens, eye drops at bed time and patching her right eye for several hours a day so her left eye can gain strength. Some days are better than others, but through it all, Lillie has been amazing. She laughs, smiles and plays with her toys. She especially loves her toys that light up. She’s rolling over, sitting up and trying to figure out crawling. It’s wonderful to see her personality come out more every day.

One of the first things we did when Lillie started experiencing trouble was to search online for more information and resources. We found several support groups on Facebook and even started our own Facebook page. Through those connections, we’ve been able to share stories with other parents who are having many of the same experiences we are having. It’s been wonderful to learn from each other. When this all first started, we felt so alone because we didn’t know any other families dealing with these kinds of issues. It’s been really eye-opening to discover how many families are having a similar experience.

Although we weren’t overly excited about the two-hour drive to Ann Arbor the first time we took Lillie, through our online connections, we’ve learned just how lucky we are to have these amazing specialists so relatively close to our home. We’ve chatted with families from all over the world and some travel for several hours to see their doctors.

We now want to do whatever we can to give back to those who have made such a difference for our family. We’ll be participating in the VisionWalk in Milford in May to help fight blindness and hope to participate in other activities to help fund research and families experiencing vision challenges.

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Ryan and Haylee KnowlesRyan and Haylee Knowles live in Three Rivers, Mich. with their darling daughter Lillie. Ryan works for an engineering firm in Indiana and Haylee works at Western Michigan University. They are incredibly grateful for their parents and family who help watch Lillie while they are at work each day. They started their own Facebook group for families dealing with similar issues.

 

best children's hospitalUniversity of Michigan C.S. Mott Children’s Hospital is consistently ranked one of the best hospitals in the country. It was nationally ranked in all ten pediatric specialties in U.S. News Media Group’s “America’s Best Children’s Hospitals,” and among the 10 best children’s hospitals in the nation by Parents Magazine. In December 2011, the hospital opened our new 12-story, state-of-the-art facility offering cutting-edge specialty services for newborns, children and women.