The Smith Family Fundraiser
Our Goal: $500 : raised $405
At 18 weeks gestation, we received Scarlett's CDH diagnosis. This news was devastating. Her prognosis was poor, and we were left to our own research to find a CDH specialist. We met a fellow CDH mom who connected us with Tiny Hero. It was through this connection that we found a specialist who could give our baby a chance at survival: Dr. Kays. We no longer felt so lost. Now we had HOPE! At 34 weeks gestation, we left behind our lives in Ohio and boarded a plane for St. Petersburg, Florida. After birth, Scarlett spent 14 days on ECMO and was found to have only 20% lung volume. Additionally, she was diagnosed with a hypoplastic aortic arch, a type of Congenital Heart Disease. She was a sick baby, but we knew she had the best chance at survival and that we had taken every step to receive the best care for her! While at Johns Hopkins All Children's Hospital, she underwent three abdominal operations. After discharge, we learned that she required open heart surgery, so she underwent aortic arch repair. Six weeks later, we learned that she had a recurrent diaphragmatic hernia as a result of a unique patch that she required due to previous complications. She recently underwent her fourth abdominal operation, and miraculously, Dr. Kays was able to close her diaphragm without a patch! This journey has been long and hard, and despite the unexpected complications, we have received the best possible outcome. We have an 8-month-old baby who is healthy, happy, and loves life!
WHY TINY HERO?
With the right medical team, a baby that was given bleak chances at survival can survive and THRIVE! It is important that newly diagnosed families receive accurate information and support in researching well-equipped medical teams. We credit Tiny Hero for helping us to understand the diagnosis and for connecting us with the right medical team. Their work is saving lives of babies and is giving HOPE to their families. Tiny Hero also comes with a support network that has provided us with invaluable emotional support. This is a positive, supportive community of families who provide love and mentorship to new families in their darkest of days. We ask our family and friends to support Tiny Hero to help give hope and opportunity to the families who will walk this same journey.
HOPE STARTS HERE HOODIE
You can also support our family by purchasing this exclusive Hope for the Holidays item. All proceeds from the sales go towards Tiny Hero. Tiny Hero is a 501(c)(3) organization built to help support families with CDH children.
What is CDH?
Congenital diaphragmatic hernia (CDH) occurs in an unborn baby when there is a hole in, or incomplete formation of, the diaphragm (the muscle under the lungs that is responsible for breathing).
CDH affects about one in every 2,500 babies (1600 cases in the U.S. each year), and occurs as often as cystic fibrosis and spina bifida, yet most have never heard of it. On average, only 50% of these babies survive. Learn more about what is CDH→
Where does my donation go?
Family Grants - We help families get to very best possible care and provide financial aid when needed.
Community Support - We create videos, update our blog and website, and produce printed materials to help expand our message of hope to a larger audience.
Inspiring Better Care - We partnered with the Fore Hadley Foundation to help fund productive research efforts across the country.