BENEFITING: Children's Hospital of Pittsburgh Foundation
ORGANIZER: Children's Hospital of Pittsburgh Foundation
EVENT: Pittsburgh Marathon 2017
EVENT DATE: May 07, 2017
I am running in the Pittsburgh Half Marathon May 7th, 2017 on the Children's Hospital of Pittsburgh Foundation Team for Landon. This amazing little boy and his family have gone through more surgeries, procedures, and hospital stays in less than 3 years than most people will experience in their lifetime. Here is his incredible story...
Landon was born June 3rd, 2014 at 37 weeks. He was a healthy 7 pounds, 8 ounces, but 24 hours after birth, he was diagnosed with Shone's Complex, an extremely rare combination of 4 congenital heart defects--coarctation (narrowing) of the aorta, parachute mitral valve, sub aortic stenosis (narrowing of the opening of the aortic valve), and supra valvular mitral membrane (abnormal tissue growth surrounding the mitral valve). In addition, Landon also has a hypoplastic (small) left ventricle, the part of the heart that pumps blood to the body. There are less than 1000 cases of Hypoplastic Left Heart Syndrome every year. He was transferred to the cardiac ICU at Children's Hospital of Pittsburgh, where he remained for 23 days, before being transferred to the cardiac unit. Landon had his first open heart surgery when he was just 13 days old, an urgent heart catheterization on August 14th, a second open heart surgery on October 3rd, from which he experienced some complications and required a revision of the surgery on October 6th. He also required 2 additional heart caths, 7 intubations/extubations during the months of October, coded 4 times, including once while he was in his mother's arms, and required CPR once. After 163 days in the hospital, including 56 days in cardiac ICU, Landon got to come home for the first time on November 12, 2014. He had 2 additional heart caths after being discharged, and also required transport from The Medical Center- Beaver to Children's Hospital of Pittsburgh by MedEvac helicopter in December of 2015. In July of 2016, he underwent a fourth open heart surgery. This was to be an "intermediary" to determine if his heart was strong enough to undergo a biventricular conversion, a new surgery being used in studies at Boston Children's Hospital, in which they "rebuild" the heart to have 4 working chambers, more in line with what is normal. Preliminary results looked promising, however a week later, after experiencing a roller coaster of complications, it was discovered that Landon had developed a blood clot in his right atrium, and an emergency surgery was required. After surgery, the surgeon said if he had waited until the following morning as he had planned, the results most likely would have been tragic. A heart cath later that week showed that Landon's heart could not tolerate the increased pressures from the intermediary surgery, and it had to be reversed by making an opening in his atrial septum. During this hospital stay, more complications were discovered. Landon's airway is 60% occluded by scar tissue, he had developed some collaterals vessels, and he also has some arteriovenous malformations, all of which present their own unique set of problems, on top of his heart issues. Landon underwent an additional procedure in December 2016 in which his airway was dilated, and another heart cath showed that he needed to have the third of the three step procedure completed sooner rather than later. He underwent yet another open heart surgery in January of 2017, his fifth open heart surgery in just 2-1/2 years, and his seventh surgery overall.
Children's Hospital of Pittsburgh Foundation wrote -
Children's Hospital of Pittsburgh Foundation is proud to be an official charity for the 2017 DICK'S Sporting Goods Pittsburgh Marathon on Sunday, May 7, 2017. Runners participating in the full, half, relay, 5K, kids marathon or pup walk can run for a reason by joining Team Children's and raising funds to help patients and families at Children's Hospital of Pittsburgh of UPMC.
To learn more about the Children's Hospital of Pittsburgh Foundation, please visit:givetochildrens.org and learn how YOUR support makes a difference each and every day to our patients and families.
For more information or questions regarding Team Children's, please contact Amy Rayman at 412-692-8954 or firstname.lastname@example.org