JAHMYA'S JOURNEY

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          Born at 34 weeks gestation, Baby girl B who we named Jahmya Latricia Parmer was born with a Congenital Heart Disease called Tetralogy of Fallot (TOF) pulmonary atresia. She had collapse of her right lung at birth so before the TOF diagnosis, her initial consult was actually because the Neonatal Intensive Care Unit thought she had dextrocardia. She was intubated until she was three months where she received her first open heart surgery to place a shunt. At six months of age, she developed a spontaneous diaphragmatic hernia (repaired 12/22/2010.

          Two months later (2/17/2011) she went for a complete repair, which started a two year saga of severe episodes of apnea and bradycardia, being intubated the entire time, needing sedation and paralytics. On 7/15/2011 Jahmya got a tracheostomy for better airway access due to the constant coding. She had and continues to have large branch pulmonary arteries with compression of the bronchi bilaterally, her left more than right side. The left is her better lung which makes Jahmya case more complex. She underwent a left upper lobectomy (09/01/2011) in the hopes of helping with these episodes. Sad to say it didn’t. On 10/20/2012 Jahmya went for a right ventricular to pulmonary artery conduit and ligation of ductal ligament.

          Jahmya slowly recovered and was discharged on 12/24/2012 after 2 years of being hospitalized in Holtz PICU BED SPACE 15. with a tracheostomy that was removed after five years in August 2016. January 2017- September 2018 Jahmya was admitted into the hospital on various occasions due to pneumonia in her left lung. Jahmya was then referred to and evaluated by the the group at Shand’s hospital in Gainesville for consideration of heart/lung transplant in October 2018 but their preliminary impression due to having pneumonia yet again in the mist of the evaluation she is a very poor candidate for transplant. Unfortunately, even after all of her surgeries and medical history, Jahmya is left with significant progressive lung disease, airway compression, pulmonary stenosis and pulmonary regurgitation to date.

          Holtz Children's Hospital in Miami, FL, referred us to get a second opinion from a doctor in San Diego California. Due to the distance and severity of Jahmya's case, My husband and I agreed to get a second opinion from Nicklaus Children’s Hospital closer to home before traveling thousands of miles. On January 14, 2020 Jahmya received a Melody valve replacement  repairing her leaky conduit as well as a stent to open the narrowing in her airways.