One of my favorite girls in the world is jump roping in honor of my "Little Miss Talia Mei" and "Harper Lily"! Both of my girls have congenital heart defects. According to the March of Dimes, in most cases scientists do not know what causes hearts to be developed abnormally. It does appear that genetics and the environment play a role, but exactly how is uncertain. We know Talia was born premature so that increased her risk of having a heart defect. We will not know the extent of Talia's heart condition until she comes home. As we have learned sometimes the medicals are not up to date, sometimes things are omitted and sometimes they just don't look for anything else besides the presenting condition of a child. Harper has a few birth defects and her little heart has at least four holes in it right now. Presently, her heart is enlarged and will need open heart surgery in the coming year or two. In addition, she has a heart valve disorder called pulmonary stenosis. This past week we received some unsettling news at Harper's heart ultrasound appointment. Her pulmonary stenosis has worsened and they don't feel we can wait until five to do the surgery. At this point they also are not giving her medical clearance to fly on a plane which is a whole other post:) Please continue to keep my little girl in your prayers, the wisdom and discernment of the doctors and the advancement of medical procedures relating to pediatric cardiology.
Here are some facts about congenital heart disease. It is the number 1 birth defect and the highest incidence of death related birth defects worldwide. There are over 35 different types of congenital heart defects and a staggering statistic, 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 Congenital Heart Defects. Each year worldwide 100,000 babies (under one year old) will not live to celebrate their first birthday but with increased funding and support we can change that. In the past 25 years, advances in treatment of heart defects have enabled half a million U.S. children with significant heart defects to survive into adulthood. For more information about heart defects take a peek at this site - one of the best! Also, if anyone out there is considering adopting a child with heart disease or recently has a child diagnosed with a heart condition please reach out to me. I would love help you and can recommend some great doctors.
As a child, jump roping for heart was a full day event at my school and to us it was a great reason to be outside all day. I didn't really know what congenital heart disease was back then. I just knew I didn't have to sit in a class all day writing notes from a blackboard. It seemed like the best day of the year to me, well that, and balloon day (which due to the deterioration of the ozone layer I don't think they do anymore!) Little did I know 20 years later I would have two children with heart defects.
Laura is jumping for my girls and her grandparents this year. Here is the link to her sponsorship page and a super cute picture of her practicing her jumping skills. Can you help support her? Every dollar helps children, like my girls and adults alike with heart disease! If you feel led, just click on the link and the “donate to Laura” button. The last day to donate is this Wednesday, March 1st. If donating past this date and want to help support pediatric heart research the link I provided above is a great organization. Thank you!
http://honor.americanheart.org/site/TR?px=2467048&pg=personal&fr_id=1683&et=kSaWIRkRIzfulFlLpaVjrw&s_tafId=119316
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