Patricia Cheshire’s youngest son Camden was born in 2004 with Total Anomalous Pulmonary Venous Return, which was diagnosed right after he was born. He had open-heart surgery four days later. She called The Children’s Heart Foundation in July of 2005, the week after her friend’s son Owen passed away, and has been fundraising for them ever since. Patricia has worked on numerous fundraisers, including Hopping for Hearts, Share Your Heart, Hearts on the Second Tee, Thankful Hearts, and the Sweet Hearts Ball. She’s the founder of the Children’s Heart Foundation- Pennsylvania Chapter.
Thanks to the kind of research The Children’s Heart Foundation supports, Camden is doing beautifully.
When Riley’s mom was 24 weeks pregnant, at a routine OB exam, a panicked doctor said, “I can’t find her heartbeat.” Then after pulling a sonogram machine into the room, he said, “I found it, but it’s half the rate it should be!” Later that day, Riley was diagnosed with Complete Congenital Heart Block (3rd degree AV block) and monitored closely though out the pregnancy and through her first year of life. Her heart rate continued to drop all year and right after her first birthday she had surgery to implant a pacemaker.
Riley is now thriving and is now on her second pacemaker. She visits a cardiologist yearly and has regular pacemaker checks and heart tests, but is doing well. She is now 10 years old and enjoys dance, chorus, playing the clarinet and baking!
Gianna Matcho was born May 29, 2014 and is the daughter of board member, Jessica Matcho. She was diagnosed at 26 weeks gestation with a very large VSD. By two weeks old Gianna was in severe congestive heart failure and admitted to Children’s Hospital of Pittsburgh. Shortly after being hospitalized, doctors found an ASD as well. Due to the size of her VSD and the shunting caused by it, Gianna was unable to eat and had a very difficult time gaining weight. At 5 weeks old doctors decided open heart surgery needed to be done. After surgery, 2 more VSDs were found; but thankfully have closed without surgical intervention! Gianna is now 2 years old and doing well! She loves to copy her older brother’s every move and steals the hearts of everyone that knows her.
Sawyer is a happy, smiling, and active toddler with a diagnosis of Tricuspid Atresia. He was diagnosed at week 22 via ultrasound and was delivered at Magee-Womens Hospital in Pittsburgh on October 11, 2014. Fortunately, he did well after birth and was discharged home within 5 days. Sawyer is a growing, happy little guy with a few bumps along the road.
He had his first heart catheterization in January 2015 to monitor his heart. He was also life flighted to Children’s hospital in January 2015 for an irregular heartbeat which was controlled with medications. On February 3, 2015, Sawyer had his first open heart surgery at 3 months old. He had the Glenn procedure and did fantastic. He was discharged just 5 days later!
He’s expected to have his 2nd and hopefully last open heart surgery (the Fontan) at the age of 3. Son of Jamie and Kenny Mountain.
Our son Alec James Louis Kahler (A.J.) was born on November 12, 2007 with a congenital heart defect known as Tetralogy of Fallot. After numerous weekly doctor’s appointments that first month, it was determined that A.J. would need his heart surgery sooner rather than later. There were complications during A.J.’s surgery and he came out on life support (ECMO). He spent almost 3 weeks in the hospital, on and off ECMO, fighting every day for his little life before he passed away on January 4, 2008 – just 7 ½ weeks after he was born. This had certainly become the worst day of our lives followed by the nightmare of telling his 3 year old brother that A.J. would not be coming home. The unthinkable had happened to our family and since that day we have been trying to guide our efforts towards making something positive out of losing A.J.
We hosted the “Remember An Angel, Swing For a survivor” Golf Outing in loving memory of A.J. for 7 years. All of our profits went to the Alec Kahler Memorial Fund of The Children’s Heart Foundation. We have raised over $200,000 that has gone towards the research of congenital heart defects. This year we participated in the Pittsburgh Heart walk in his memory. We are thankful to have found such a wonderful organization where we can help fund some of the most promising research projects for Congenital Heart Defects. It is my hope to save another parent from ever having to go through this heartache of losing their child.
We hold A.J. close within our hearts and he will always walk with us throughout our lives. His was a precious life that will be forever in our hearts. We miss him more than anyone will ever know and he will always be our fighting hero and our precious, treasured angel.
The Snyder family’s journey with Olivia’s CHD began during a fetal ECHO at 22 weeks in utero. Prenatally, Olivia wasn’t given a clear diagnosis. The left side of her heart was severely underdeveloped & it wasn’t initially clear if her left ventricle would be viable, which could lead to a diagnosis of Hypoplastic Left Heart Syndrome. Liv’s heart would be monitored every 4 weeks & her postnatal plan would become more clear with time. Fortunately, Olivia’s left ventricle continued to grow. The plan was to deliver Olivia right at Children’s Hospital of Philadelphia in their Special Delivery Unit and on June 2, 2014, Olivia Mary came into the world. Liv underwent heart surgery at 4 days old to repair her Coarctation of the Aorta, in hopes that the left side of her heart would rise to the occasion & work sufficiently. Olivia was a rockstar during and after surgery! To date, the left side of her heart has grown to a normal size & is functioning appropriately. Liv will continue to receive cardiac care throughout her life to follow her bicuspid aortic valve and subaortic membrane, as well as the functionality of her aorta at the coarctation site. Olivia is a wonderfully loving, joyful & thriving little girl. Her strength & perseverance amaze her family on a daily basis.
At 20 weeks pregnant, my husband and I walked into Children’s Hospital of Philadelphia expecting to hear that the only reason we needed an echo was an extra precaution and there was nothing wrong with our twins. Unfortunately, we were told that Baby A (Andrew) has a bicuspid aortic valve and that Baby B (Colin) has Tetralogy of Fallot and would require open heart surgery to survive. Colin was a fighter from the get-go. He never stopped moving in the womb and the minute Andrew was out of the way, Colin came into the world swinging.
After two wonderful weeks at home, we went to a routine weight check at the pediatrician where Colin had what is known as a “tet spell” and was turning blue. They immediately sent us to the ER and we were admitted to the CICU (Cardiac Intensive Care Unit). Colin had his first open heart surgery the next morning, on April 12. Colin had a few set backs after surgery that kept in the hospital a few extra weeks. Prior to finally being discharged, during an echo, it was discovered that he developed a pseudoaneurysm, which led to his 2nd open heart surgery on May 17, 2013. Recovery from this surgery was smooth and we were sent home 6 days later.
He has since had four heart catheterizations, with his last one being on February 12, 2016. During that cath it was discovered that the previously placed stents were both cracked. They were able to balloon dilate and place new stents. Hopefully these last for a long time!
Today, Colin is our strong willed and witty 3 year old. He loves to do things he shouldn’t while laughing his sneeky little laugh. He also loves playing trains and running around with Andrew. Every morning he runs into school excited about what adventure he will have that day. Colin was also recently released from the Early Intervention program where he received feeding and speech therapy. We’re so proud of him and all of his hard work 🙂
Lily Colleen McManus was born with a complex congenital heart defect, Transposition of the Great Arteries. She was born at The Children’s Hospital of Philadelphia’s Special Delivery Unit and underwent open-heart surgery to save her life at one week old. Lily’s parents, Laura and Lee, are so grateful to her incredible team at CHOP but also to organizations that fund CHD research like The Children’s Heart Foundation. Research is why Lily is alive, thriving, and making her beautiful mark on our world. Just 35 years ago, babies like Lily did not survive. Laura is committed to raising awareness and funds for The Children’s Heart Foundation as a way to give back and help the next heart baby.