Thank You.
Thank you to everyone who has been helping us raise CHD awareness this week. Thank you for reading and sharing our story. Thank you for your extremely generous donations. Thank you for signing up to walk with us in June. You are not only supporting and spreading awareness for a very worthy and meaningful cause, but you are showing us that Sadie will never be forgotten. You are reminding us that her short life made and will continue to make an impact. To us, that means everyth
Congenital heart defects are common and deadly, yet research is grossly under-funded relative to the
Of every dollar the government spends on medical funding only a fraction of a penny is directed toward CHD research. In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHDs. Even with the small amount of funding from the federal government combined with efforts from groups like The Children’s Heart Foundation,
In most cases, the cause of congenital heart defects is unknown.
Congenital heart defects occur when a baby's heart fails to form properly during early pregnancy. Although scientists feel both genetic and environmental factors may play a role, they don’t know why congenital heart defects occur. What they do know is that congenital heart defects don’t discriminate. Your age doesn’t matter. Your race doesn’t matter. It even seems that to some extent, what you do while you are pregnant doesn’t matter. I have heard stories about women who dran
Congenital heart defects effect MUCH more than just the heart.
More than half of all babies born with a congenital heart defect will require at least one invasive surgery in their lifetime. Further, about half of all children with complex congenital heart defects will have neurological and developmental disabilities. Sadie had her “temporary” heart surgery six days after she was born. The purpose of this surgery was to create a temporary path for blood to flow from her heart to her lungs until Sadie was big enough for the open heart surg
There are more than 40 different types of congenital heart defects. There is no known cure for any o
Once Sadie’s CHD was detected, we made an appointment with a pediatric cardiologist from Lurie Children's Hospital to diagnose her specific heart defect. Like Sadie, many kids with a CHD have more than one defect. Sadie was diagnosed with Tetralogy of Fallot (TOF) during her first echocardiogram and then Pulmonary Atresia during the last echocardiogram done a week before she was born. Naturally, we wanted to know how they would fix her defects. Back then, I honestly thought t
Approximately one of every 100 babies is born with a congenital heart defect. ONE IN 100.
In the United States, that translates to one baby every 15 minutes. How is it possible that I knew nothing about the defect most likely to affect my baby? I was five times more likely to give birth to a child with a CHD than Down Syndrome, but I could tell you 100 percent more about Down Syndrome than CHDs. After finding out the sex of our baby at the 20 week ultrasound, we were told to schedule a follow up ultrasound for the following week because the tech said she couldn’t
Congenital heart defects are the leading cause of infant death in the United States.
Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Approximately 10 percent of those babies will not live to celebrate their first birthday. For me, this is not just a scary statistic – this is reality. Our daughter lived for 23 days before she became part of that 10 percent. Sadie was doing very well until she suddenly stopped breathing in my arms while at home on December 7, 2014. I gave her CPR until the ambulance came. My h
Congenital Heart Defect Awareness Week
Two months ago today we lost our sweet daughter Sadie. Sadie had a congenital heart defect and was with us only 23 days. Her death was sudden, traumatic and just so unfair. Her doctors at Lurie Children's Hospital are shocked by her death, as her condition, while very serious, is not one that typically causes death if detected early. Today is also the first day of Congenital Heart Defect Awareness Week. In remembrance of our daughter and acknowledgment of CHD Awareness Week,
