“Jahmya is a nine year old twin with the history of being born at 34 weeks gestation, with 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 NICU thought she had dextrocardia. She was intubated until she was three months where she received her first 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 Hospital has agreed to not partake in surgery, but a second opinion from a doctor in San Diego California agreed to take her case. Due to the distance and severity of case, My husband and I agreed to get a second opinion from Nickalus Children’s Hospital in Miami, Fl before traveling thousands of miles. Throughout Jahmya’s 9 years of life, we’ve faced many obstacles that continues to this day.” – written by her mother, Jamara. November 2019