Wednesday, February 8, 2012

CHD Awareness Week - Day 1: FAQ

Today marks the beginning of CHD Awareness Week! Normally, Trent takes the honor of updating all of you and providing information about CHDs, but he asked me to take on the responsibility this year. My posts may not be what you've seen in the past nor may it be what you would like to see, but I'm just trying to share something new and important to me.

For Day 1, I saw this on the blog of a mother affected by CHDs and thought it might be interesting to use her idea of a FAQ session for those of you who might not know our story or still have questions about our journey.

Q: What do you want the public to know about congenital heart defects?

A: There are so many things, it's almost impossible to list them all. Perhaps the most important detail is that heart defects touch every 1 in 100 children. 1% may not sound like much, but heart defects are the number one killer of infants under the age of one. They are also more deadly than all forms of childhood cancer combined, yet they receive considerably less funding for research.
I also want people to know that there is no "cure" for a CHD. Yes, there are surgeries, but a child living with a CHD will always have side-effects. His/her stamina will never be that of a normal child. Simple illnesses like colds will always be more dangerous. Physical exertion, which stresses and ages the heart, will always have to be monitored and sometimes limited. Just because you can't see anything wrong with them doesn't mean they're "fine." They will never be "fine."

Q: What causes congenital heart defects?
A: I wish I had an answer, but I've been assured many times by many experts that even the most intelligent and experienced doctors have no idea what causes them. There are tons of theories, but none of them has been proven to actually cause heart defects, only to increase risks.

Q: Do you know why your son has a heart defect?
A: Not at all. I ask myself this same question all the time, but I have to trust that God had a plan for our family and that He knows why, but I don't think I'll ever have a definite answer.

Q: You said your son had two open-heart surgeries. What's wrong with his heart?
A: Tucker is missing one of the four chambers of his heart. The left ventricle, the largest of the four chambers, is responsible for pumping blood out to the body after it has come from the lungs and been cleaned up through the left atrium. Without this vital part of the heart (and a series of three life-saving surgeries), Tucker's body would suffocate and die.

Q: Does that mean that Tucker has a lot of restrictions on what he can do physically?
A: At this point in his life, Tucker has no official restrictions. Because he's not old enough to participate in sports, we don't have to limit him. If anything, he limits himself. When he starts getting out of breath, he stops running or jumping until he feels comfortable again. This will be something he'll have to self-monitor as he gets older, and only he can determine how much is too much. However, according to his cardiologist, he can do anything his body will allow him to do.

Q: How has Tucker's heart defect affected him?
A: It hasn't. He lives a very "normal" life. Like I said before, illnesses hit him a little harder, so we had a 4-day hospital stay Christmas 2010 for RSV, but we haven't seen any other direct effects. The most noticeable effects came at the very beginning of his life. Other than the difficulty of the first surgery, he had some feeding issues as a result of a temporary paralysis of his vocal cords. However, once the paralysis healed, the feeding issues disappeared -- and he certainly has his voice back!

Q: You said that Tucker's heart defect wasn't diagnosed until he was a day old? Can't heart defects be discovered during routine ultrasounds?
A: Many women do find out around their 20th week of pregnancy, but we did not. Those heart defects are typically noticed by a sonographer in the OB's office and referred to a perinatologist or pediatric cardiologist. We had two sonograms with a perinatologist (a specialist trained to look for abnormalities in fetuses), but it was never caught.

Q: How did you discover there was a problem?
A: Nothing seemed to be wrong with his heart until a lactation consultant who was working with us noticed he was breathing heavy and took him back to the nursery for observation. That's when the on-call pediatrician discovered a murmur (we later learned that feeding difficulties are an early symptom of a heart complication). At that point, we were told it could be one of three scenarios -- one being as simple as an in-utero artery that hadn't closed yet but could be treated with medication and the other being as complicated as an underdeveloped heart. We never imagined it could be the latter. For safety reasons, our delivering hospital decided to move us to a nearby hospital with more specialized resources, and shortly after we arrived there, we received the news that it was indeed the worst of the three scenarios and if we didn't get to Dallas immediately, we could lose our baby. With that statement, we were loading ourselves back into the incubator and ambulance for the final leg of our transport to Medical City Children's, where we later learned that Tucker was within 30 minutes of losing his life.

Q: How has this affected your marriage?
A: It certainly hasn't been easy, and we have questioned ourselves and each other more than once, but the struggle itself has shown us how strong our friendship and marriage was to begin with. There is no possible way we could have survived this nightmare if we hadn't understood how to comfort (and sometimes distract) the other person. I can't speak for Trent, but I can honestly say that witnessing his courage and resolve has motivated me to be a better person. In the chaos of the first few days, Trent threw himself into countless websites looking for information to explain to my feeble mind what was happening to the baby that I had just delivered, adored, and blamed myself for hurting. Additionally, and in no way am I trying to diminish the affect this CHD has had on our family and friends, there was no one else that could understand what it felt like to be in my shoes. Only Trent could understand what I was feeling, and I found comfort, peace, and respect in that fact. Those feelings continue now that we are expecting our second child. We are both experiencing the fear that comes with knowing our new baby has an increased risk, but we also know - beyond a shadow of doubt - that whatever happens, we did it once and we can do it again.

Q: What is the risk that the new baby will have a heart defect?
A: The chance of a CHD in any family is 1%. In our situation, the risk of another child with a CHD increases to 2%. However, we have been assured by our surgeon and cardiologist that it's very rare, and we have yet to meet a family that has more than one child with a CHD.

Thank you for taking the time to read the answers to these very important and common questions. If you have a question that was not addressed in this entry, please ask. We are more than happy to share anything that helps spread awareness and understanding of this complex and life-changing disease.

With heart hugs,

Trent, Dena, and Tucker


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