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
~Dena
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