Edmonton mother, daughter continue struggle with lung disease

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Sharla Ozeroff, an Edmonton mother, holds her daughter, 18-month-old Luna Ozeroff during a meeting with The Lung Association, Alberta & NWT March 21. Luna has a rare lung disease known as congenital lobar emphysema. (Jeff Cummings Photo)

Sharla Ozeroff, an Edmonton mother of four young children, admits she has a hard time sleeping at night.

Her playful 18-month old daughter, Luna, had to endure extremely difficult breathing challenges ever since she was born. The young girl has a very rare lung disease known as congenital lobar emphysema — an illness that causes Luna’s upper left lobe and middle right lobe of her lungs to be overinflated, making it difficult for her to breathe. Air that is breathed into the lungs gets trapped, causing the over-inflation of the lungs.

Congenital lobar emphysema is rare, but the condition usually affects only one lobe of the lungs. But in Luna’s case, her condition affects both of her lobes — something that is only reported in five per cent of cases.

“Breathing is so important — we seem to take it for granted until we all get to a point where we can no longer do it, or until your child can’t do it.” said Ozeroff. “It is very scary to see your child with blue lips in the middle of the night. It’s hard to sleep at night.”

Luna’s challenges began one hour after she was born, according to her mother. Luna, Ozeroff’s youngest daughter, was born after a “completely uncomplicated pregnancy,” but roughly one hour after the birth, Luna went into respiratory distress, said her mother.

Doctors were able to reduce Luna’s symptoms temporarily and after a five-day stay in hospital, the family was sent home.

However, when Luna was two-months old, Ozeroff said during a nap she discovered her baby girl’s skin was grey and her lips were blue. Luna was then rushed to the hospital where doctors resuscitated her and found out her oxygen levels were extremely low.

Luna stayed in hospital on oxygen for a week and was released. However, two months later, Luna was once again admitted to Hospital, and that’s when doctors discovered Luna’s condition was worse than originally thought.

“The alarm bells started going off,” said Ozeroff.

Doctors found her trachea was bent off to one side and her left upper lobe of her lungs was so large, it was pushing vital organs over, putting pressure on her heart. A CT scan also showed her condition included the swelling of her middle left lobe.

Luna is now on medication to treat her illness and had a lobectomy on her upper left lobe when she was six months old.

However, because of her surgery, surgeons can’t treat her condition that affects her right lobe because of complications with the surgery on her left lobe.

“The doctors never had a patient quite like Luna,” said Ozeroff. “They don’t really know what to do.”

Ozeroff says her family has to endure a lot of uncertainty that includes many trips to the hospital, including seven emergency visits in one month during November 2015 for baby Luna.

The Lung Association, Alberta & NWT needs your help to make a difference for Luna and the many other children suffering from lung disease.

Your donations today will help researchers make a difference for families like the Ozeroffs. Help us find better treatments and cures for children like Luna, give to The Lung Association today.

—JC—

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