Home of the Four Trans

Congenital Heart Defect Week is February 7-14. For all those in the CHD club, including heart parents, we know what this week is all about–spreading awareness about the prominence of this disease in our community, and how we can help to make changes to bring light to this chronic disease for the purpose of research and legislation.

Fact #1: CHD’s are the #1 birth defect in America. It affects about 1% of newborns — over 40,000 babies are born with heart defects in the United States every year. Each day 10,830 babies are born in the U.S.; 411 of them have a birth defect — of those, 87 will be born with a congenital heart defect — that’s more than cerebral palsy (27), sickle cell disease (27), Down Syndrome (12), and oral/facial clefts (11) combined (total of 77). (According to the March of Dimes)

While over a hundred CHD survivors and their supporters congregate in Washington DC to help pass legislation, and many more organize and attend parties and fundraisers, I voice my efforts by sitting here on my computer at 4:30AM telling you a bit of our story.

Our story. Yes, CHDs is mostly about Justin in our family. But, CHDs also affect myself, Loi, and his older brother, Nathan. The guilt I carry, as a mother, is undeniable. It comes in passing waves, but, there is always that wonder of how did it happen? What could I have done to prevent it? How come I never learned about heart defects during my prenatal appointments and in my pregnancy books? Yet, I am tested for risk of Down Syndrome in my baby? Shouldn’t heart defects be #1 on the list since it is the #1 birth defect? If I decide to have another child, what are his chances of developing CHD?

Fact #2: Research on CHDs are underfunded. For every dollar provided by the National Institute of Health (NIH), only one penny is provided for pediatric research. Only a portion of that penny goes to support research on CHDs, the most common birth defect (according to the Children’s Heart Foundation).

We need more research to answer these questions, to learn the why, to improve the outcomes of surgery, to improve surgery/intervention techniques, to learn how heart medications (usually given to adults) affect children, to prolong their lives, to give them quality lives, to prevent CHDs.

Fact #3: CHD’s are the leading cause of defect related infant deaths. Not Sudden Infant Death Syndrome (SIDS).

Doctors need to be more educated about CHDs, and know the symptoms so that the children can be treated before it is too late. Newborns who have murmurs should have a pulse/oximeter reading before being sent home to test the oxygen level in their blood.

Fact #4: There are a shortage of donor organs and blood. Only about 30% of the children who need a heart transplant receive one in time . About 40,000 units of blood are used everyday, yet only about 5% of the adults, who are eligible to donate blood, do so. Someone needs blood every three seconds in the United States — that someone is often one of our heart children (Congenital Heart Defects.com).

CHD children like Justin who have single ventricle anatomy must look to heart transplants as their last resort–but, that whether or not they’ll need one is unquestionable. From an optimistic viewpoint, his own heart could last him up to 15 years. Every time he goes into surgery and goes on the heart lung bypass machine, he needs donor blood.

Fact #5: CHD afflicted children and adults are not recognized as chronically ill people in the US. Over 175 CHD Survivors, their family members, and their cardiologists were brought together by the National Congenital Heart Coalition (NCHC), members of seven different CHD support groups united to to promote the Congenital Heart Futures Act, a new law that, if passed, would establish permanent federal funding for CHD research. It would also mandate that Congenital Heart Disease is a chronic Illness requiring lifelong care (www.learnaboutchd.blogspot.com).

Without recognition as a chronic illness, it is difficult for CHD patients to receive the care they need, especially when they don’t have insurance. With CHDs come a myriad of other potential problems. Justin currently sees 8 different specialists (including his heart surgeon), and receives physical and occupational therapy. It is likely that he’ll receive speech therapy as well.

I hope I have made it clear that CHDs are a serious problem that lacks awareness in our community. I will keep writing in my blog. I will keep talking about CHDs.

Ways you can help:

-make a donation to the Children’s Heart Foundation where 100% of donations are contributed to research about CHD.

-make a donation to the March of Dimes where  a portion will go towards research on the genetic link of CHD

-if someone is pregnant, tell them to talk to their pediatrician about congenital heart disease, and the signs and symptoms to look out for in their baby. Better yet, tell them to ask the hospital to check the baby’s SATs. A poke to check for bilirubin levels is more difficult, I think.

-mention that you know someone with CHD if the topic of birth defects come up (Justin, for one). You’ll be surprised how many people you know will know of someone, too. This will help heighten the awareness that CHDs are more common than we think.

-donate your blood.

-become an organ donor.

Thank you all for your support. We would not have been able to make it through without you.

Here is a glimpse of how far Justin has come thanks to the research and advancement in cardiothoracic surgery and medical care:

Justin before first Open Heart Surgery. See? No line.

8/18/07. 1 Day after first Open Heart Surgery (10 days old)

1/18/08. One day after Second Open Hear Surgery. (5 months, 10 days old)

2009. A wise, happy little boy.

This entry was posted on Saturday, February 14th, 2009 at 6:33 am and is filed under Heart Disease, HeartDay. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.