I’ve been awed by the brave example Kristine has set for our community in honor of her beautiful heart baby Cora. In the face of her love I am speechless. If you know me, you understand how rare an occurrence that is.
But I will force the words and face the fears. Because the stakes are the lives of precious little babies.
My daughter was born with Tetralogy of Fallot but CHD does not define my vibrant little three year old. And as she grows, I am more reluctant to write about her. I want her to have the opportunity to create her own identity and decide for herself how much CHDs are a part of that.
Others don’t have that luxury. They may require medications all their lives, they may not be able to be as active as other children, or there may not be a repair available or the condition may not have been caught in time.
Heart defects are among the most common birth defects–approximately 40,000 babies (1-2%) in the United States are born each year with a heart defect–and they are the leading cause of defect-related infant death. And yet, there is comparatively little funding going into researching the causes of these defects and treatment options.
Without surgery, depending on the exact pathology, tetralogy of fallot has a mortality of 30% of patients by age 2 years to 50% by age 6 years. Only 5% will live to age 20.
However, just one surgery with a very high success rate (95% success in the absence of complicating factors) and my daughter now has a good chance to live a normal life (well, as normal of a life as any child of mine could have with me as her mommy).
I am one of the lucky ones.
And yet, every time I look into her bright, inquisitive eyes, I’m terrified. I’m frightened of the possibility of life without her. And I feel guilty when I think about all of the mothers who do not have that gift because they had to do something even harder–let their baby’s earthly presence go.
I do my best to push those worries aside and focus on how very blessed I am to have my amazing little light in my life.
So, not just for me and my little one, but for all of the parents and babies and adults living with CHD or feeling the absence of a precious life, I am asking you to educate yourselves about CHDs.
We need more screening. A simple, non-invasive test, the pulse oximeter measures oxygen in the blood and can catch many of the most deadly CHDs. Every baby should be screened.
We need public cord banking & donations. Private firms encourage parents to make an expensive investment in cord blood banking but most likely their baby will never need the cord blood and even if they do, it may not be usable or sufficient. But a public bank filled with donations would benefit the children who need it most.
We need more research. Did you know that it may be possible in the future to grow a heart valve from a child’s own cells and then use a catheter to replace the valve, avoiding the potential complications of open heart surgery? New research could save thousands of lives every year and millions of dollars–but research into simple, cost-effective treatments is hard to fund when compared with pharmaceutical research.
What can you do?
- Tell everyone about CHDs and pulse oximeter screening. You might save a baby’s life. You can fan Cora’s Story, CHD Babies, or 1in100 on facebook and share with your friends. This is one of those cases where knowledge truly is power.
- Write to your senators and congressman about S. 621 and H.R. 1570.
- Donate to an organization like For Hearts and Souls, which gives a chance at life for children in impoverished communities.