Monday, April 29, 2013

Information Overload!

While we are trying to figure out all the details with having a child with CHD (congenital heart defect), we've been filling out tons of paperwork for medical assistance, scouring blogs, websites, and attempting to get our hands on books that have CHD as a topic. So far, our local public library has nada.

I've come across some interesting tidbits of information though and will answer a few questions for people that have asked us.

Q: When does it happen?
 According to the March of Dimes website 1 in 125 babies are born with CHD and they are formed within the first 8 weeks of gestation. So, essentially the mama doesn't have any control over whether or not her baby is going to have CHD. You've barely peed on a stick and announced to a few people at that point you are even pregnant.  No amount of prenatal vitamins can prevent this. In up to 90% of babies born with CHD, there is NO KNOWN cause.

Now, if you have heart issues in your family tree, that can contribute to raising your risk factor. We found out after Miles was born that we have minor heart issues on both the maternal and paternal sides. If you have seizures & take anti-seizure meds, rubella, or PKU that can increase your risk factor also.  Since Miles has CHD, his children will be at a higher risk (about 50%) of having one of them.

Q: What kind does he have again and how often does it happen?
Miles has Atrioventricular Septal Defect and it occurs in approximately 2 out of 10,000 live births. It effects both boys and girls equally. It is one of the more complex, but easily repaired, CHD's since it effects 2 portions of his heart.

Q: Did your age have anything to do with it?
Both Dale & I are 42; 41 for the majority of the pregnancy. Besides having older eggs, we were good to go. Age is actually NOT a factor for CHD. 

Q:  Did you have any ultrasounds/sonograms during the pregnancy?
Yes, we actually had 4 of them! Two were in the first trimester, one in the second, and the final at 39 weeks 6 days gestation (one day prior to my due date). NONE of the sonos showed any heart issues.

Q: Will it ever go away?
Well, this is a hard question to answer. Yes, the higher risk of congestive heart failure will drastically go down after his open heart surgery (OHS) since his heart will be repaired in both areas, but it doesn't actually make it go away. He will always be a boy with CHD.

Q: How many different heart issues are associated with CHD?
This astounded me when I read this!  There are over 40!!  Twice as many children die with CHD each year than all the childhood cancers combined together. Yet, there is little to NO funding available for research. According to Children's Heart Foundation, only 1% of every dollar received at the major private funder of cardiovascular research goes to any Pediatric cardiac research. Likewise in 2007, the National Institutes of Health's NHLBI (National Heart, Lung and Blood Institute) allocated less than 3% of every dollar invested in research to any Pediatric cardiovascular research.

                                                     Liam 3, Miles 7 weeks, & Mary
                                                             cell phone pic 4/29/2013


  1. Hugs my sweet friend!! You are the perfect Mama for Miles and any challenges he faces! --Lesley

  2. Mary, I heard they just passed a new requirement that all newborns receive screenings with oxygen saturation to help with detect heart issues! Before 48 hours of life, I believe. I had no idea it was so common - your post has me interested in learning more, going to research!

    1. This is a HUGE detection method for CHD. So easy to do and can catch a ton of issues right from birth. Miles' pulse ox was tested in the ER and ranged from low 70's to 90's. I love that it is not invasive for baby either.


    has a chart for the newborn screening...