stories with vision Rare Condition, Valuable Treatment

One of the Eye Institute of Alberta’s smallest patients is precious for more than one reason.

Clara Berezowsky is a lively baby, happily bouncing in her jumper while her mother Louise looks on. You wouldn’t guess that little Clara is quite different from most one-year olds.

Clara was born with CHARGE syndrome. CHARGE syndrome is a genetic pattern of birth defects which occurs in about one in every 10,000 births worldwide. It is an extremely complicated syndrome, involving extensive medical and physical difficulties that differ from child to child. Babies with CHARGE are often born with life-threatening abnormalities, including heart defects and breathing problems. In Clara’s case, she was born with closed breathing passages, small holes in her heart and eyes, and deafness.

“She’s definitely a complex kiddo,” says Louise with a smile.

Clara, Louise, Nadia, and Paul Berezowsky

Clara’s parents Louise and Paul are accustomed to many trips to the hospital to consult with specialists who are helping Clara develop as normally as possible. Due to CHARGE-related complications with Clara’s eyes, she has recently become one of the youngest patients at the Eye Institute of Alberta.

 “The C in CHARGE stands for coloboma, or a small hole in the eye close to the optic nerve,” explains Louise. “Last Christmas I noticed her left eye was really swollen. We took Clara to the Royal Alex, where we were told that her intraocular pressure was 37.8. Normal is between 12 and 22, so obviously something was very wrong.”

Clara was treated by Dr. Carlos Solarte and Dr. Karim Damji, both experts in pediatric eye care.

"Clara's glaucoma is unique because it is associated with CHARGE," says Dr. Damji. "She has been under the care of a number of ophthalmologists and together we have provided complex medical and surgical care for Clara so she is able to regain and retain sight from what would otherwise be a condition that progresses to blindness."

Dr. Solarte consulted with Dr. Damji, and surgery was rapidly prescribed. Clara underwent a trabeculectomy, a surgical procedure that involves creating a passage in the sclera (the white part of the eye) to allow excess eye fluid to drain and allow pressure to return to normal. Due to the changes in Clara’s body due to CHARGE, the trabeculectomy wasn’t effective. Dr. Damji then placed a tiny valve in Clara’s eye which collects excess fluid and shunts it naturally into the bloodstream. An unfortunate bacterial infection further complicated the situation weeks after surgery; after a round of antibiotics, Clara’s eye was finally out of danger.

“It wasn’t very pleasant!” says Louise with a good-natured laugh. “But we received excellent care from everyone at the Eye Institute of Alberta. Taking care of a little one can be tough at the best of times, but staff at the Royal Alex and the Stollery was very accommodating with us. Dr. Damji and Dr. Solarte were great at getting us emergency appointments when we needed them – their quick response basically saved Clara’s eye.”

 
“Because Clara is deaf, her eyesight is very important. She will need her eyesight in order to learn sign language, so saving what vision she has is a top priority for us. Dr. Damji and Dr. Solarte recognize that, and they’ve been very accommodating and acted very quickly to help Clara.” – Louise Berezowsky

"We are very fortunate to be able to look after Clara and other children with such serious eye disorders," says Dr. Damji. "I would consider our new pediatric ophthalmology unit at the Stollery, as well as the surgical care we provide for children at the Royal Alexandra Hospital, as exemplary and world class."

The Royal Alexandra Hospital Foundation has been proud to support the Eye Institute of Alberta for many years. Our most recent campaign is a $4 million effort designed to dramatically improve the patient experience at the busy eye clinic. The bulk of the funds ($2.3 million) will go towards renovating high traffic patient areas. These important changes to the Eye Institute of Alberta will improve efficiency, allow staff to better connect with patients, and provide a more pleasant environment for everyone.

As someone who has spent a good deal of time at the Eye Institute, Louise says she definitely understands the need for these renovations.

“All of the staff at the clinic are very helpful and informative, but the physical space can definitely be a little confusing,” she says. “I can see how better use of that space would benefit patients and their families during treatment and wait times.”

Clara’s prognosis is still a waiting game as she continues to grow and the effects of CHARGE manifest themselves. When it comes to her eyes, they will be closely monitored in the future so that her pressure stays normal.

“We’re definitely going to need a lot more care in the coming years,” says Louise.

“Because Clara is deaf, her eyesight is very important. She will need her eyesight in order to learn sign language, so saving what vision she has is a top priority for us. Dr. Damji and Dr. Solarte recognize that, and they’ve been very accommodating and acted very quickly to help Clara.”

While Clara has a challenging road ahead of her, Louise feels confident that one piece of the puzzle – Clara’s eyes – are in good hands.

“We’re very lucky to have the Eye Institute of Alberta.”

The Royal Alexandra Hospital Foundation is dedicated to raising $4 million to help the Eye Institute of Alberta to continue providing the very best in vision and eye care. We encourage you to join us in our efforts to help ensure that patients like Clara get the patient care they need.