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Posted on October 25 2016
I will run the GO! St. Louis Marathon April 9, 2017 as a #PHAthlete to raise awareness and research dollars for Pediatric Pulmonary Hypertension.
July 12th, 2012 my beautiful niece Haylee was born. Haylee grew as all children do in their first year and was on the exact growth chart as her big sister Jordayn. Cold season came along and Haylee's body began to show signs of Influenza A, RSV, and Croup. She was never hospitalized and recovered without complications. Haylee turned 2 and she continued to grow at a steady pace, but her physical milestones were behind for her age. Haylee's crawling and walking milestones were delayed. Around the age of 2 1/2 my family began to notice that Haylee's eyes became blood shot and that she would get out of breath while playing. It became clear when Haylee would play with her older sister that there was a difference in her breathing. Haylee began to get a purple tint to her lips and fingernails. At her 3 year check up her doctor noticed a heart murmur for the first time. Haylee was scheduled for a follow up appointment. That same week while at an appointment with her Papa the medical staff noticed Haylee's purple lips. They suggested that she needed to get an echocardiogram as soon as possible. Haylee's doctor was notified and agreed to do an Echocardiogram, that is when life changed. The Echocardiogram showed that Haylee had complete Atrial Ventricular Septal Defect. Typically an infant with this heart defect develops complications and can result in heart failure within the first few months of life. Haylee's body adapted and this caused strain on Haylee's lungs resulting in Pulmonary Hypertension. Haylee had a Right Heart Catheterization to see if an increase in Nitro would lower the pressures. This was unsuccessful. Haylee is now receiving two oral medications called Bosentan and Sidenafil. Additionally, Flolan is delivered through a central line and requires Haylee to wear a backpack 24hrs a day. She cannot swim, bathe or play freely. The 3 medications are taken in hopes to lower the pressure in Haylee's lungs so she can survive the heart surgery needed. There are no guarantees that the medication will work. Without surgery Haylee may not know adulthood.
#run4Hay #pray4Hay #TeamO2breathe #PHAthlete #Heart2CurePH
Why does research in Pediatric Pulmonary Hypertension matter? There are no approved treatments for children with PH.