Suzanne's Story
Suzanne Rooney Alden - Born July 27, 2003
Suzanne was born at Johns Hopkins Hospital in Baltimore, Maryland in the summer of 2003. Her mother's OB/GYN was Dr. Kamal Hamod and Suzanne’s pediatrician was Dr. Lauren Bogue at Johns Hopkins. Suzanne was a normal vaginal delivery birth with no complications. During birth, her mother, Trish, was given an antibiotic as a precautionary measure, because she was in labor for over 24 hours. Later, Trish was told this was very helpful once they found her Toxoplasmosis diagnosis. Suzanne was 3 weeks old when Trish was feeding her early one morning in a twin bed and she jerked her head and Trish accidentally dropped her on a thinly carpeted floor in the bedroom. Trish immediately took her to the ER at Hopkins where they observed Suzanne for 5-7 hours. After some time in the ER, a young pediatric fellow came in the room and explained that he had done a fellowship and research project at Mass General and recommended a CT scan for any children under the age of a year when head trauma occurred. Trish was hesitant to have Suzanne scanned because of her age, so she asked for the study and quickly read it. She agreed to the scan, which would show if there was any brain issues based on the fall. The CT scan took place and a few hours later, the Chairman of Neurology came and sat on a foot stool in the room and explained that Suzanne had lots of calcifications on her brain. These calcifications were not typical in a healthy normal newborn. The doctor determined that Trish and Suzanne must have contracted some sort of infection during pregnancy. He recommended a spinal tap on Suzanne, blood work for both of them, and asked Trish all of the places she had traveled while she was pregnant. He called in the Infectious Disease team and immediately started running tests. Suzanne at this point was a normal healthy 3 week old. Trish was in total disbelief that something major could be wrong, but was very worried. Several hours later, the Infectious Disease Doctors had determined that they were almost certain Suzanne had Toxoplasmosis. They recommended Trish and Suzanne fly to Chicago immediately to start treatment. They told Trish the World’s Leading Expert was Dr. Rima McLeod at The University of Chicago and they had already left her 4 messages about Suzanne. Trish walked home from the hospital calling everyone she knew at U of C to try and get an appointment as soon as possible. That evening, Trish spoke with Dr. McLeod – she was absolutely incredible! She started Suzanne on an oral regiment immediately and explained the treatment plan. One year from this day in August 2003, Suzanne was to take medicine that was only mixed at U of C and Johns Hopkins. It was to be made weekly and she was to have two blood draws every week as well. Medicine could not be given until her pediatrician reviewed red and white blood count levels. Suzanne could not be in a group setting or around other children. If her immune system was compromised, she wouldn’t be allowed the medicine thus prolonging the treatment plan. Suzanne and Trish became part of Dr. McLeod’s amazing study. They vigilantly watched Suzanne's growth, milestones, vision and hearing. They learned so much in the year and half of treatment. They worried a lot, cried a lot, and learned ton. Alongside Taking Out Toxo, Suzanne and Trish, with their entire family and friends, want to promote Toxo education, policy, doctors, research and pharma in the Toxo arena and help all families that are affected and prevent people from being effected. |