Did you know??
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Congenital Heart Disease (commonly called defects) is the #1 birth defect worldwide. (1)
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Congenital Heart Defects are the #1 cause of birth defect related deaths worldwide. Each year in the United States approximately 4,000 babies with heart defects (under one year old) will not live to celebrate their first birthday. (1)
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About 1 out of every 125 babies is born each year with some type of Congenital Heart Defect in the United States (approximately. 40,000/year.) (1)
Any type of disease or defect is so heart wrenching. There are so many people affected by it and yet, people are so quiet about it. We at Alt Oil Co are proud to have supported Faith’s Angels over the last 10 years. The Goodfellow’s are an amazing family, what they do for the CHD research is amazing as they put 80% of their donations to research alone!
Within this last year we hired Doug, he told us about his daughter Alexandria, who was born with CHD. Here is their story:
Our Daughter, Alexandria, was diagnosed with a congenital heart defect in utero at approximately 20 weeks into our pregnancy. We were told the left side of her heart was underdeveloped and she would need three open heart surgeries in order to survive with her condition of only half a working heart (Hypoplastic Left Heart Syndrome). To say this was a shock was an understatement. We had no family history of defects, I had followed all the rules, read all the books and was otherwise healthy. This was the start of a wild ride, one that we never expected to be on.
Her first surgery was at 9 days old, and was also one of the most risky. Handing our first born, seemingly healthy child over to the surgical team was heart wrenching. The surgery lasted approximately 8 hours, and when finished the surgeon was unable to close her chest due to swelling. Although shocking, there was something reassuring about seeing your child’s beating heart inside her chest. We knew that although she had a machine breathing for her, that her little heart was beating all on its own.
Alexandria spent almost a month inpatient after her initial surgery. After we came home, she developed heart failure at 4 months of age, and due to lack of blood flow required immediate surgery to remove a portion of her intestines that had died. After recovering from this surgery, she had the second open heart surgery, after which her body and heart were able to receive the blood flow it required.
Her final surgery was at 2.5 years old. We were in the hospital for a week, with Alex up and walking the very next day. Much of our time was spent painting, playing with playdough, and setting up a giant wooden train on the floor of our hospital room. This kid sure doesn’t let much k
eep her down. This was the first time in her life that she didn’t have blue lips or dusky skin, and her energy levels were so much better.
She is our miracle, a true gift from God. We’ve learned to make every moment count, as tomorrow is not always certain. And although her condition will never be fixed, and she will require a lifetime of follow ups from her Doctors, we are so fortunate to live in a time when these children get a fighting chance at life. Through this journey, we’ve come to realize how common Congenital Heart Defects really are. 1 in 100 kids will be born with a heart defect. Heart defects are the leading cause of death in infants, and are 60 times more prevalent than childhood cancer. Little is known about the causes of these defects, and research is grossly underfunded. Most medications used for treatment are stolen from the adult world, as pharmaceutical companies do not see this as a profitable area to research drugs specific for CHD use.
What’s next for Alex is somewhat unknown. Many of these children are just now getting into adulthood. Treatment for them is still developing. That being said, our faith in God, her doctors and our family is strong. We’re hopeful that advances in medicine will keep up with her as she grows and will be able to lead a full and joyful life. We live every day to its fullest.
-Doug, Brittany and Alexandria Kruse
Not every family, with a child born with CHD, is as lucky as Alex. Supporting organizations like Faith’s Angels is one way to bring that hope to more families. We hope by donating this year again can bring more knowledge to CHD and that it can help research in the future!