Scarlett S. - Diagnosed Age 3
In February of 2018 I brought my three year old daughter Scarlett to her pediatrician’s office because she was dehydrated and lethargic. In the weeks before our family had been sick with a cold virus, we got better and Scarlett was getting worse. She was admitted to the hospital with pneumonia. On the early morning of February 21st Scarlett experienced her first pulmonary hemorrhage and went into cardiac arrest. They were able to revive her and she was flown to a hospital 4 hours from where we live. When we first arrived we were told the most likely diagnosis was leukemia. Scarlett began treatment for leukemia. She continued to fight and was intubated on the oscillator (step up from a ventilator) for many weeks. In March her bone marrow biopsy came back with no cancer cells but was abnormal. That is when her rheumatologist got involved and a diagnosis of lupus nephritis class 5 was made and confirmed with more blood tests, genetic testing, and a kidney biopsy.
Scarlett then began aggressive treatment for her lupus which included chemotherapy, pulse steroids, and rituximab. She remained in critical condition for over 3 months in the PICU. She suffered multiple pulmonary hemorrhages her last one being in May and had to have chest tubes inserted multiple times due to bilateral pleural effusions and a rare chylothorax. She also had complications from being in an intensive care unit for an extended period of time including a central line infection that caused endocarditis. Due to her critical condition she continued to have a poor chance of survival. After weeks of aggressive treatment for her lupus she started getting better. She spent 43 days on the oscillator and 57 days on a conventional ventilator. On her 100th day in the PICU she was taken off ventilator support and on day 108 her tracheotomy was removed.
After 4 months in the PICU she is now home with her family. She continues to be monitored closely by her team of doctors. Her doctors have not been able to find a case with PH in a child as young as her. Her first symptoms were actually present at age 2. She is currently on mycophenolate and hydroxychloroquine to control her lupus. Her main complaint is joint pain. My hope is to connect with other parents and that Scarlett's case can help other children survive pulmonary hemorrhage in lupus.
-Becky, Scarlett's mom