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
 

14 days

A few days after Miles was born, I noticed that his mouth/nose would go light white or blue-ish anytime he nurses. He would have labored breathing and fall asleep way too early during the nursing. I brought it up to Dale, who didn't really notice it, and my mom.

 

We watched it for a few days and  I told Dale to remind me to bring it up at our doc appointment for Miles when he was 1 week. Both of us totally forgot--DUH!!

 

I kept watching it and it just kept nagging at me, so we called the pediatrician when he was 2 weeks & he told us to go to Cooks' ER. We were coming back from Dallas and had to head home to get more stuff (diapers, etc) before heading to the ER.

 

Once we get there, the ER doc asks all the basic questions about when, where, etc. with the blueing (which is called cyanosis) and he thought he heard a slight murmur. Both my mom & Dale's dad had one & grew out of it. The ER doc wanted to do an ECHO, EKG, and get a chest Xray to make sure his lungs were clear.

 

 

 

We do all the testing and wait. We waited and waited and waited and we joked that either a) they were backed up or b) we were going to get some really bad news. A few minutes later, the nurse comes in and tells us that they are super behind & the doc should be in soon. WHEW! That made us feel soo much better.

 

When the doc came in, he had a laptop with him and my heart just sank. He told us that Miles had not one, but two holes in his heart and that he would have to have open heart surgery to repair them. He gave us several names of the defect and asked if we had any questions. Neither one of us did. Miles was 14 days old.

 

So, after that, we called the cardiologist they recommended and made an appointment for the first available one.

 

We went and they did a review of the tests and he told us that one hole was 7mm and the other was much smaller. Since they didn't close by 14 days, they wouldn't and surgery is definite.

Our job right now is to keep Miles healthy and he can't be around any sick or germy people. He is doing well and gaining weight right now. If he starts to slow his gaining or doesn't gain, we'll have to do the surgery much sooner than the 6 month mark which was given to us. That puts us at the end of summer in August/September.

 

His heart defect is known as Endocushion Cardio Defect or Atrial Septal Defect (ASD) or Artioventricular Canal Defect.  Miles has two holes, one in the atrial portion of the heart and one in the ventricular part. This means that blood (oxygenated and nonoxygenated) mixes and moves freely between the chambers. It is the most common (or second most common) heart defect and is associated with children with Down's Syndrome. Miles does not have DS.

 

Miles' heart defect is primum meaning it will not close on it's own and partial meaning there is only one defect.

 

Here is a normal heart:

In a normal heart, oxygen-poor (blue) blood returns to the right atrium from the body, travels to the right ventricle, then is pumped through the pulmonary artery into the lungs, where it receives oxygen. And oxygen-rich (red) blood returns to the left atrium from the lungs, passes into the left ventricle, then is pumped through the aorta out to the body. 

 

 

Here is Miles' heart:

 

 

Another way to look at the heart differences side by side:

 

 

 

So, we watch and wait and pray for health and peace for Miles. It is hard to watch him struggle already and not be able to do anything about it. We do have to worry about congestive heart failure, but not in the sense of his heart will stop. We have to worry about his heart over working and the blood will mix too much; which will not oxygenate his body and organs.

 

Here are a few websites if you want to learn more:
Mayo Clinic

Boston's Children's Hospital
David Darling
Cook's Children's Hospital

 

He will be 4 weeks on Tuesday.