Her Story... so far

Olivia Jean Logan

Olivia was born on June 13, 2017 at just 34 weeks gestation when her mom’s water ruptured spontaneously. She was born with great lung function and blood sugar but the doctor’s decided it would be best to keep her in the NICU at least until her expected due date to monitor her growth.

At just 3 days old, as Olivia’s parents spent a night at home before the long hospital stay, they received a 2:30 am phone call from the NICU explaining that there was something wrong. She hadn’t had her first meconium bowel movement and her stomach was distended. This led the doctor’s to request a transfer for her to go to a higher level NICU in the morning. This began Olivia’s story that would end up with a cystic fibrosis diagnosis.

After the first four days at the new NICU, her pediatric surgeon decided to do an exploratory surgery to check out what was going on. It was figured out very quickly that she was experiencing meconium ileus, a condition where the meconium turns concrete like in the intestines and is most often found in those with cystic fibrosis. We didn’t have an official diagnosis at this time but her team was pretty certain she had CF.

After another six weeks in the NICU, being spoon fed enzymes before feeds, living with an ileostomy bag and having another surgery to reverse it, and struggling to grow and thrive, she was released with a referral to the CF clinic at Children’s Mercy.

Her Story... Initial Diagnosis

Newborn Screen & Sweat Chloride Test

Now in the state of Kansas, every newborn screen tests for the 60 most common mutations of CF (there are actually around 1700 different mutations). While we were in the NICU her screening came back with finding one mutation but we didn’t get a full mock up of her genes until we were at Children’s. We also did another test called a sweat chloride test to measure the amount of salt that gets released on her skin, another common side effect of those living with CF.

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They did find elevated numbers on her sweat test and when we got back her blood work, they were also able to find her second gene mutation, although it was an extremely rare one accounting for only 3 cases worldwide at that time; Olivia in the US, a female in the UK and another female in Finland, talk about a rare case!

Her Story... Medicine & Therapies

Lifelong Preventative Care

Olivia, like a lot of CFers, has continued to take enzymes before each meal, does breathing treatments twice a day, and has other daily medications and therapies that she will have to continue for the rest of her life. The care for this disease is not only time consuming but very expensive. Although many advancements have been made to CF care through fundraising efforts with the Cystic Fibrosis Foundation, there is still no cure.

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Daily Enzyme Pills

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Weekly Treatment Hours

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Daily Medicines & Therapies

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Yearly Routine Clinic Visits

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