If I thought parenting was hard before, then I never really understood what the word "hard" meant. Having to make critical decisions about my daughter's health care is, quite simply, terrifying. But before I get all of you worked up into the same emotional frenzy that I'm in, let me reassure you by saying that
Everything. Is. Going. To.
Be. Fine.
Now that I've given you the mantra, feel free to
repeat it back to me, loudly and often.
Some of you are aware of this and some may not
be, so I wanted to let you know about Victoria’s upcoming medical procedure on
Thursday, January 9th. This is going to sound a little scary, but
it’s really a very common issue and the procedure is extremely
safe. Here is my layperson’s explanation, followed by some links to
additional resources if you are interested in learning more.
Victoria has a congenital
atrial septal defect (ASD), which is essentially a hole in the
membrane (septum) that divides the atria, the two upper chambers of the
heart. This is very common and is not life
threatening. Many people do not discover an ASD until well into
adulthood; however, it is advisable to repair it at a young age whenever
possible. Victoria's ASD was discovered when she was
about a month old. When she was about a month old, her abuela noticed
that Victoria's lips were turning blue and she took her into the ER, where they
ran a bunch of tests and discovered the ASD. This is called cyanosis, and
is a result of the circulatory problems that occur with an ASD. We are
lucky that she experienced it at that time; otherwise, her condition might
never have been diagnosed. Since that time, she has not experienced any
other symptoms to our knowledge. Another way this can be diagnosed is by
the abnormal sound produced by the blood rushing through the hole in the
membrane (commonly referred to as a "heart murmur"), which can be
detected by medical professionals listening with a stethoscope. Her cardiologist
can always hear it, but the pediatrician sometimes hears it and sometimes does
not.
In a normally functioning heart, oxygenated
blood (“red blood”) flows from the lungs into the left atrium. The
blood is pushed through a valve into the left ventricle. Then it
goes through another valve to the aorta, which carries the oxygen-rich blood to
the body. The cells use up the oxygen and the blood (now “blue
blood”) returns to the heart and enters the right atrium. The blue
blood flows into the right ventricle and then goes through the pulmonary artery
into the lungs, where it is infused with oxygen, and the cycle repeats
itself. In a heart with an ASD, some of the oxygenated blood from
the left atrium (which pumps at a much higher pressure in order to push the blood
out into the body) is diverted through the hole and flows back into the right
atrium. This means that the right atrium is getting excessive blood
flow, because it receives both blue blood from the body, and red blood through
the ASD. Depending on the size of the ASD, the right side of the
heart can become enlarged over time and can put the adult patient at risk of
heart problems or stroke. Additionally, the lungs may become damaged
due to excessive blood flow. Victoria’s ASD is not excessively large
(approx. 13 mm in diameter) but it is large enough to warrant closure.
There are two ways an ASD can be repaired: (a)
open heart surgery, in which the heart tissue is sewn back together, or (b) the
placement of a device, which I like to think of as a patch. After
extensive research and consultation with multiple medical professionals, we’ve
decided on Option B for Victoria. The procedure is less invasive,
will leave her less susceptible to infection or other complications, and, we
believe, is generally safer. The “patch” is called
an Amplatzer septal occluder, but for our purposes, we’ll just
keep calling it a patch. A catheter will be threaded through a large
vein starting in her groin area, up into her heart, and through the ASD, at
which point the device will be inserted. I’ve linked a couple of
videos below, so that you can get a better visual picture. Her own
heart tissue will grow over the device, and it will remain securely in place
for the rest of her long and joyful life. Recovery time is quick-
she will stay in the hospital for 24 hours so they can keep an eye on her, but
she will resume normal activities and be able to return to school the following
Monday.
We feel very confident in the cardiologist we
have chosen to perform the procedure. Our doctor has been
practicing pediatric cardiology for 18 years and has performed this procedure
over 500 times. The patch has been widely used over the last twelve
years and is extremely safe (Amplatzer is a brand name – there is another
brand available called Helex, each has its advantages, and the
doctor will determine which is the more appropriate choice during the
procedure). Victoria will check in at the hospital at 5:30 a.m.
on Thursday, October 9. Her procedure is scheduled to start at 7:30
and will last approximately 2-3 hours. Although we have every reason
to believe this procedure will go smoothly with no complications, it is still a
very difficult thing for me to relinquish control, to place all my trust in the
medical personnel, and to give over the responsibility for my daughter’s
care. I can definitely use your support over the next few
weeks. If you have questions, please feel free to ask. If
you have medical or other knowledge that you think may be helpful to us, please
do share your wisdom and experience. If you live in the area and
want to be there with me and Dave in the waiting room, we welcome your presence
and support. For those who are far away, I will provide real-time
updates right here on my blog.
What I really need right now is reassurance
and love and peace and understanding. I thank you for providing this
for me and my family.
Here are some links that I think are easy to
understand and may be useful in furthering your knowledge, if you are
interested.
Please hold my little daughter in your
hearts over the next few days...
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