Christmas comes early for woman with cystic fibrosis

Rob and Kassa Shradar, who has cystic fibrosis, welcomed home a baby girl, Emersyn Lane, on Dec. 5. Kassa Shradar’s story is somewhat unique as she endured significant CF-related illness during her pregnancy and managed to maintain her health, mainly from her home.

Rob and Kassa Shradar had no intentions of having children when they married almost 10 years ago. They knew the risks and didn’t want to put a child through what Kassa had experienced — a rigorous routine of chest percussion, airway clearance medications, extra exercise and attention to nutrition.

The now 33-year-old wasn’t supposed to live past age two. Diagnosed at 11-months-old with cystic fibrosis (CF) after three bouts of pneumonia, the Tekamah, Neb. native’s chances of living to see her teens were slim.

Her parents, Jan and Denny, never lost hope though and watched their only daughter graduate from high school and go on to college despite the toll CF took on her lungs and other major organs.

At the age of 20, Kassa met Rob. At the time, the life expectancy for CF patients was only 21 or 22-years-old.

“I was friends with Kassa’s brother, Jeb, and I was over at his house one time and saw a picture of a beautiful girl,” Rob said. “When I asked who it was, he said, ‘don’t even think about it.’ Once we got to know each other though, he told me if anyone was going to date his sister, he wanted it to be me.”

The rest is history. A few years ago, the Shradars reconsidered having children after Rob got tested for the CF gene and the results came back negative.

In the past, medical professionals had discouraged women with CF from having children as nutritional demands and difficulty gaining weight were viewed as problematic issues. However, recent statistics have shown that women with CF actually take better care of themselves when they are pregnant and go on to become mothers.

“Patients who have cystic fibrosis typically have two potential problems in pregnancy; one is pulmonary complications related to CF, and the other is diabetic difficulties,” said Paul Tomich, M.D., a high risk obstetrician and professor in the obstetrics/gynecology department at UNMC. “But Kassa takes very good care of herself. Her medical condition is treatable, and something that should not preclude her from having children if she wishes to.”

On Dec. 5 at 5:47 a.m., the Shradars wish came true and the couple welcomed Emersyn Lane, 6 pounds, 12 ounces, into their family two weeks before she was due.

“She does everything for Emersyn, so she and the baby have the best chance for good health.” Rob Shradar

It was an early Christmas present for the first-time parents as well as Peter Murphy, M.D., associate professor in internal medicine and director of the adult CF program at UNMC, recognized as one of the top eight benchmark adult programs in the nation by the Cystic Fibrosis Foundation.

“The birth of Emersyn was truly a joyful occasion for me and the entire adult CF care team,” said Dr. Murphy, who made sure to get his picture taken with the newborn. “We fought fairly hard to maintain Kassa’s health during her pregnancy.”

While the UNMC adult CF program welcomed eight babies to women with CF in 2007, and three in 2008, Kassa’s story is special because she endured significant CF-related illness during her pregnancy and managed to maintain her health, mainly from her home.

“When her lung function dropped, as it did on several occasions during the pregnancy, we had to treat her with IV antibiotics, which we did on a fairly prolonged basis on two separate occasions. The last course was extended right up to the point of delivery,” Dr. Murphy said. “Kassa worked harder than most to continue her treatments throughout her pregnancy. Then again, she always works hard to stay healthy.”

Before becoming pregnant, Kassa underwent chest percussions two to three times a day for one hour. The treatments require her to wear an inflatable therapy vest that vibrates and loosens the mucus and causes her to cough. Now, she’s up to four times a day for several hours.

“She does everything for Emersyn, so she and the baby have the best chance for good health,” Rob said.

“Being in my mid-30s, I don’t take for granted how wonderful it is to get a little miracle like this,” Kassa said. “She’s the biggest blessing.”

“She’s a dream come true,” Jan said.

While Emersyn does not have cystic fibrosis, she is a carrier of the disease. It means that if she decides to have children one day, she and her significant other will need to get tested.

“And by then they may have found a cure,” Kassa said.

Kassa’s comment may not be that far off. The median survival rate for people with CF has steadily increased over the years to nearly 38 years-old, thanks to advances in the field, standardized care in CF centers and better medicines to treat infections and fight the progression of lung disease.

For more information about Cystic Fibrosis, visit www.cff.org.