Dr. Jay Brooks: Providing Supportive Care to Treat a Rare Disease

During his nearly four decades in medicine, Jay Brooks, MD, chairman of Ochsner’s Baton Rouge Hematology/Oncology Department, has been faced with a wide array of complex conditions and unique cases. Rarely, though, was a patient diagnosed with paroxysmal nocturnal hemoglobinuria, known as PNH, a blood disease that causes red blood cells to break apart, and is diagnosed in fewer than 500 U.S. patients annually. Rarer still was Allison Parker, his PNH patient who had begun a pregnancy. Few physicians anywhere encounter such cases. In fact, during his long career, Dr. Brooks had never managed a pregnant patient with PNH, a condition which can create numerous severe risks for both mother and baby.

Allison Parker was initially diagnosed with PNH as a teenager. Monitoring and treatment of the disease, including bone marrow biopsies and bi-weekly IV infusions of a rare, expensive medication, Soliris, can be daunting. Allison had been under Dr. Brooks’ care for several years and was coping with the disease well, pursuing a career as a cardiovascular sonographer and marrying in 2014. But managing PNH through a pregnancy created an entirely new set of challenges.

“Dr. Brooks said, ‘Everything’s going to be OK, we’re going to do this,’” recalls Allison. Yet Dr. Brooks knew the road ahead would not be without challenges. “I was nervous for her – it’s a rare disorder. We managed her well over the years, but this was a new variable.” Dr. Brooks reviewed existing research on PNH and contacted the company that makes Soliris to discuss its effects on Allison’s pregnancy. Her dosage was increased in amount and frequency, daily shots were administered to lower the risk of blood clots and, as her pregnancy progressed, blood transfusions were performed every other day.

When the obstetrics team induced labor at 37 weeks, labor and delivery were uneventful and Allison and her husband Robert welcomed their first child, a healthy baby girl they named Macklyn.

Allison wept when she introduced Macklyn to Dr. Brooks, who shared the family’s joy at the new arrival. The pregnancy went so well that Allison decided to become pregnant a second time. Management of this pregnancy was easier, guided by what Allison and the clinical team had learned previously, and the Parker family welcomed a healthy boy, Garrett.

For this Baton Rouge-area family, the expert, compassionate care of one Ochsner physician and his clinical team has not only been a life saver – it has also been a life giver.