Most of you know that my daughter Grace was born with a CHD called Ebstein's Anomaly. You can read more about Ebsteins here. Grace had a rough start but I am proud to say she is doing AMAZINGLY well now. She will still have to continue to fight this her whole life, but for now she is doing great and we are so blessed to have her.
This being CHD Awareness Week I thought I would post some photos of Gracie’s journey and some facts abou;t CHD.
I have tried again and again but for some reason I just can’t get these pics in order. Sorry. The first photo is when she was 2 weeks old, just after her second open heart surgery. (her chest is still open in the photo) The middle photo was taken a few hours after she was born. They were prepping her for the first heart surgery. The last photo was taken when she was one week old; she had just came out of her first open heart surgery and was on ECMO (a heart and lung bypass machine).
Here she is 6 months old. She is off the feeding tube but still on the oxygen.
One Year Old!
At one year she was progressing very well. She came off Oxygen just after her birthday. Developmentally she was a little behind. She was finally sitting up but still not crawling.
At 18 Months, Grace was beginning to catch up. She was crawling and even learning sign language. Still no talking or walking. She had also developed a very silly personality at this stage. Such a goofball!
2 years old! she is walking, talking and still has that goofy personality.
3 years old. She is doing amazingly well. Her heart looks great! Up until now she has been getting Cardiac Catheteriation 1 to 2 times per year. After the last one (just a few months before her birthday) the doc said her heart looks great and that we might not have to go back for another cath for a few years! She still has Pulmonary Hypertension issues which prevents us from going to high altitudes.
This list if from the website It's My Heart
CHD FACTS:
Congenital Heart Defects are the #1 birth defect. Source: March of Dimes Congenital Heart Defects are the #1 cause of birth defect related deaths. Source: March of Dimes About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect. (approx. 40,000/year) Source: Children’s Heart Foundation Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. Source: Children’s Heart Foundation The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD. Source: Children’s Heart Foundation This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. Source: Children’s Heart Foundation The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year. Source: Children’s Heart Foundation Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research. Source: Children’s Heart Foundation Though research is ongoing, at least 35 defects have now been identified. Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years later. In some cases, CHD is not detected until adolescence or adulthood. Source: March of Dimes It is a proven fact that the earlier CHD is detected and treated, the more likely the affected child will survive and have less long term health complications. Source: March of Dimes
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