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Josiah's Story
Baby Josiah was diagnosed at 20 weeks invitro with a severe congenital heart defect.
Josiah was initial diagnosed invitro with Hyperplastic left heart syndrome (HLHS). HLHS is a when the heart’s left ventricle is severely underdeveloped and affects the normal blood flow through the heart. We were initially told that he would immediately need a transplant and he would have a minimal chance of survival. After several interviews with cardiac physicians and longs hours of research we discovered with the proper medical attention and providers Josiah’s journey was possible.
Throughout the pregnancy doctors were concerned about a possible discontinuous left pulmonary artery, we worried if the first surgery was even a possibility. Born January 18th, Josiah, was quickly whisked away as his heart jumped into a tachycardic episode. A few hours later once stabilized I held my beautiful baby boy. Three days later came his first surgery, echoes reveled that while is LPA was small it was not discontinuous. This was great news, because now he was eligible for the Norwood surgery. Doctors performed a PA plasty, added a BT shunt and opened arterial wall. Later we would discover that he would need a stent as the LPA narrowed. Three weeks post-surgery we headed home!
In August of 2019, Josiah had his second surgery, the Glenn procedure. As always, Josiah was a rockstar. Now at 9 months of age, he continued to amaze us with his determination and spunk. Josiah was up moving and ready to leave the hospital a week after surgery.
In July of 2022, Josiah had his third surgery, the Fontan procedure. Now at the age of three, Josiah was incredibly strong and brave. Once again Josiah had a quick recovery to the stepdown unit and was ready for discharge within a week until he caught pneumonia inpatient, which added an extra week to his inpatient recovery. Each day Josiah continued to push through and was very determined to get home to his hot wheels.
Fast forward to today, Josiah has quarterly cardiac check-ups and he is doing amazing. He started his first year of pre-school and has made many friends. Josiah is filled with so much, light, life, love, and energy. Josiah is our hero! Josiah is our King! He continues to be an inspiration to us all and a daily reminder to smile and enjoy life.
We walk in honor of Josiah and many other in the world like him. Congenital heart defects are the most common type of birth defect in the United States. Affecting about 40,000 births a year! Josiah’s CHD diagnosis is just one of many different heart defects. There are about 18 different types of congenital heart defects. Every 15 minutes a child is born with a CHD!
Your donation counts because fundraising is a key component of advancements made through research. Due to technological advancements in the healthcare and supporting research CHD deaths have declined by 37.5% since 1999. The Congenital Heart Walk is dedicated to raising funds to support The Children's Heart Foundation's mission: to advance the diagnosis, treatment, and prevention of CHDs by funding the most promising research.
Thank you for the continued support. We appreciate the love and support from our loving family and friends. It is important that we continue to bring awareness to congenital heart defects and help support those in need. The King Josiah Foundation is in celebration of Josiah and his journey. We hope to support children and families in the CHD community.
Always with Love,
The King Josiah Foundation Team