A Mom’s Tireless Pursuit for Answers Leads to Cincinnati Children’s
Texas Baby Receives Care at our Bronchopulmonary Dysplasia Center
When Judaea was born prematurely, doctors near her hometown in Texas were unsure how to best proceed with treatment and care.
Like many babies who were born more than two months early, Judaea had developed a chronic lung disease of prematurity known as bronchopulmonary dysplasia (BPD).
Despite several procedures, her underdeveloped heart and lungs were not improving. Multiple medications failed to control Judaea’s pulmonary hypertension (high blood pressure in the lungs), and her mother, Johanna, was desperate for answers.
Additional surgeries were recommended by the Texas team – including the placement of a tracheostomy tube to create a secure airway prior to starting a third pulmonary hypertension medication – but Johanna had different plans.
Adamantly opposed to the tracheotomy, Johanna never wavered in her commitment to find the best care for her daughter. She sought second opinions from top pediatric hospitals across the country and searched for other options online.
“I was seeking an alternative to the trach. And I knew that [Judaea] never had an airway evaluation or anything like that,” said Johanna. “I knew there were alternatives. And I decided to do the research and find out what alternatives there were.”
Finding Answers at Cincinnati Children’s
She soon found the BPD Center at Cincinnati Children’s. It wasn’t long before Johanna was talking with staff members and driving north from Texas to begin treatment options for Judaea. Once here, Johanna, a retired, 22-year Army disabled veteran, knew she had made the right decision.
“It was awesome. The way the whole setup is different, it’s very welcoming. The technology was more up to date. And their airway program – I felt it was just what she needed,” said Johanna.
The BPD team began with an evaluation of Judaea’s heart, lungs and the extent of her pulmonary hypertension. Tests were run to help determine the next course of action outside of a tracheostomy, including an echocardiogram, extensive airway evaluation, lab tests and a high resolution chest CT.
Julie Nilles, a nurse and program manager on the BPD team, noted the added benefit of Johanna being able to share “every aspect of Judaea’s life, including test results, respiratory status and medications that had been tried.”
While the BPD team is comprised of neonatologists, pulmonologists, cardiologists, radiologists, researchers, respiratory therapists and nurses, parents are also considered a crucial component.
“We want to partner with families and providers to improve the immediate clinical status of the patient and build a care plan going forward,” said Nilles.
Tests Confirm Need for PDA Ligation Surgery
Instead of a tracheotomy, the team at Cincinnati Children’s discovered that Judaea needed to have patent ductus arteriosus (PDA) ligation – a surgery to close an artery, located between two major blood vessels leading from the heart, which had failed to close after her birth.
In most babies the ductus arteriosus normally closes within two or three days after birth. But when it remains open the result is that oxygen-rich blood, which should be circulating into the body, instead flows back to the lungs.
Johanna listened to the doctors’ recommendation and agreed on the PDA ligation. In fact, this is the same surgery Johanna began advocating for her daughter beginning when she was 2 months old, only to be told it wasn’t the best option at the time.
Thankfully, she said, Cincinnati Children’s saw things differently. She credits the dedicated BPD team and how they are well-equipped to care for Judaea and other patients.
“At Cincinnati Children’s, the difference is they actually have a BPD team that can tackle both problems – the chronic lung disease and the pulmonary hypertension, which was causing her not to be able to get off the respiratory help,” said Johanna.
“All along it was the PDA that was pushing the extra blood to her lungs.”
Successful Surgery, Quick Recovery and Return to Home
Doctors wasted no time, and Judaea’s surgery was performed in January when Judaea was 7 months old. Within a few weeks she was able to come off her heart medications because her pulmonary hypertension had improved so dramatically.
“It was shocking,” said Johanna. “It took me less than 30 days to get done [at Cincinnati Children’s] what I was trying to get done for seven months.”
Today, Judaea is doing well. She is off oxygen, eating normally and is now back home in Texas surrounded by family and friends. She will have a follow-up appointment in six months, but Johanna is feeling optimistic about her daughter’s future.
“The docs said when they did the airway evaluation that she pretty much outgrew the damage,” Johanna said, with relief. “Her lungs had expanded to where they were able to function on their own. They usually say you should expect the worst, instead of the best, but she was improving the very next day.”
(Published May 2020)