Monday, February 8, 2010

It's CHD Awareness Week!!!

When Ellie was 32 weeks gestation, she developed Tachycardia (a fast heart rate) and subsequently a severe heart murmur. Shortly after delivery, it was heard again by our pediatrician. Visit after visit I kept asking about the murmur and had other troubling signs that something was not right. She would breathe in short shallow breaths, she would sweat profusely when she ate. Her legs always had a marbling to them that looked like a rash and there were no pulses in her feet. She quit growing from two months to five and a half months. She also quite babbling about a month before she was finally diagnosed. These were things I continually went to the doctor for. But every time I was reassured that she was o.k. and that they had a simple reason for it. I am not telling you this to worry, but a mother's instinct is so strong and wish I had gone to a different doctor for a second opinion. It's worth it if you feel that something is not right. Ellie was born with a Coarchtation of the aorta and a bicuspid aortic valve. If caught at birth, is usually repaired with one surgery and possible stints later on. Because hers went undiagnosed, she developed severe dilated cardiomyopathy and at the time doctors said she was probably days away from death. Some have not been so lucky. This is when we entered the world of CHD. I have met so many wonderful people that have been such a great support to us and those that already knew us that have prayed on our behalf. We are so grateful for all the medicines and measures that have kept Ellie sustained thus far. I wanted to post about the statistics of CHD for awareness week.

CHD Statistics-

*Every fifteen minutes a baby is born with a CHD.

*Congenital heart defects are America’s #1 birth defect. Nearly one of every 125 babies is born with a CHD (almost 1% of all children born each year!).

*Congenital heart defects are the #1 cause of birth defect related deaths. 1 in 3 children who die from a birth defect have a congenital heart defect.

*This year almost 40,000 babies will be born with a congenital heart defect.

*In the U.S. twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined. Yet funding for research of pediatric cancer is 5 times greater.

*From 1993 to 2003 death rates for congenital heart defects have declined by 31% due to advances made through research!

*There is not yet a preventative cure for any type of congenital heart defect.

*Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research.

Hopefully by spreading awareness, someone might be spared the sorrow and the grief that comes along with this birth defect. I would love to see more research go toward this. And as technology gets better, we are hopeing to see research go towards a possible cure.

Update on Ellie-She has not had a passing out episode since she has been on her life watch monitor. Yeah!!! But it would be nice to see what her heart is doing. She has an MRI on Feb. 23 if she can stay healthy for 3 weeks before. Wish us luck on that one! Hopefully I can post on her first steps soon. She's taken a few so far.

1 comment:

  1. She can take some steps as long as she agrees to not pass out anymore... :-) They just get into more trouble when they start walking, or running, as Kevin does.