(Written December 2002)
Hearts Of Hope ~ 2 Member
Our story starts with a vacation. We have two children, Natalie who
is 10, and Stephanie who is 5. They've both been fairly healthy kids
all their lives, no red flags, no big causes for concern. Neither is
very active, Natalie prefers reading to virtually anything. They both
dance in ballet, but that's about the limit of the physical activity
for both of them. Spring Break 2002 we were in Las Vegas. On the way
to Hoover Dam one day Stephanie complained of an ear ache and she was
warm with a fever. We were trying to decide if we should go back to
the hotel when we passed a pediatric urgent care clinic. We stopped
in and asked if they would take a walk-in, and they said yes. They
diagnosed the ear infection, but the doc also heard a heart murmur,
which was news to us as she had never, ever had one.
We weren't overly concerned about it, but when we got home we made an
appointment for her shots and checkup. At the visit, the doc wasn't
available, but the nurse practitioner saw her. He told us that he
barely heard anything there, but since we wasn't as knowledgeable
about these things that he would send us on to a specialist. Both of
those visits, I believe was God looking out for us, or Stephanie's
condition would never have been found.
We saw the specialist almost two months later, really not concerned,
even if she had a murmur, we figured it was mild, as it had never
been heard before. Lots of people have those, and it never causes any
problems for them. They did an EKG and an extensive ultrasound and
they found a hole in the center of her heart, about the size of a
quarter. To put it into perspective, her heart is about the size of
her fist - her fist is smaller than the palm of my hand. Put a
quarter on that. The technical diagnosis is ASD - Atrial Septal
Defect. A congenital heart defect that she was born with but
apparently, our pediatrician never caught.
That is all the bad news. The good news is that it was reparable.
Also, all the literature we have found states that this problem, when
repaired by the age of 5 gives them a 100% chance of a long, normal,
life. Incredible miracle that they found it at the age of 5!!! The
repair itself will could be done with full bypass open-heart surgery.
We would be in the hospital for a minimum of 5 days to make sure
there is no leakage around the heart after they close it, then a 5-6
week recovery period. They've presented a second option to us which
is much less invasive. They go in through the groin, up the artery
and put a nickel mesh umbrella into the hole. It's one day in the
hospital rather than 5, so up front it seems like the better option.
Unfortunately, they have only had conditional FDA approval for 5
months and they have performed a grand total of 5 procedures. None on
a child this young. It has been in clinical trials for 10 years, so
all the data about how it works and all the risks vs benefits are
only 10 years old. For us, we are leery of it because of the 10 years
of data. How do they know what a nickle plate in your heart is going
to do 30, 40, 50 years from now. She's only 5 years old. We hate to
throw out the non-invasive option, but after doing all the research,
saying a lot of prayers, and talking to virtually everyone we could,
we just felt it was too new and there wasn't enough information about
the long term effects of it.
It's so daunting, scary and overwhelming to even consider someone
cutting into your child's body, much less their heart. We had good
days and bad ones. We spent much of it in shock. The first day I just
spent the whole day on the phone gathering information. The second I
cried all day long. It helps to focus on the statistics and all the
good things about this. It's hard not to let the emotions take over
because the fear is so paralyzing.
Stephanie's surgery on July 8th went very well. The hole was bigger
than they expected it to be (about the size of a 50 cent piece, and
her heart was quite a bit enlarged. The doctor told us that not only
did we not have any choice regarding the open heart (if we had gone
with any other option, we would have been doing an emergency open
heart anyway), but that we didn't have as much time as we thought we
had, or her heart would have given up. God smiled on us that week.
The doctor was amazing,only having her on bypass for 40 minutes. It
is incredible that they can get their hands, their equipment, their
tools, into such a tiny space and create miracles.
After the surgery, Tom and I were standing by her bedside in ICU and
her eyes rolled back into her head and all the alarms went off. She
had stopped breathing and was dying. The nurses rushed to bag her and
were yelling for help from the doctors in ICU. The chaplain dragged
us out of the room and all we could do is look through the windows
and cry. It was an eternity. All we could do was hold each other and
beg God for her life. They had to give her three reversals to get the
drugs from the OR out of her system and get her back. The good news
is that she was alive, the bad news is that she had to deal with the
full ramifications of open-heart surgery with NO drugs whatsoever.
For an hour and a half, she screamed in pain "my heart hurts! Oh my
God my heart hearts". Our hearts hurt too. They let us back in to
help settle her down, but of course, in that kind of pain, what can
possibly settle her down! Finally they tried a very tiny amount of
morphine. I had to leave the room, I couldn't deal with what might
happen. I truly don't think I was supported by my own legs during
this time, I know God was holding me up because no parent should have
to go through what we went through. She fought so hard and was such a
tiger. She's my hero. Never have you seen a 5 year old as brave as
this one.
Now I look back on our story, 3 months later on the eve of her 6th
birthday. I'm so grateful for her life. I'm grateful for the doctors
- especially the pediatric urgent care doctor that heard something
nobody else had ever heard. The entire process was so full of pain
and also of miracles. No parent should have to go through their child
having a surgery like this, no parent should feel the fear that CHD
parents feel, but we thank God every day that things went the way
they did. This was a silent killer that would have taken our child
from us and now we're wrapping Barbies for her birthday. Emotionally
she has completely recovered from the trauma. I imagine it will take
Mom and Dad years to get through all of it. She is so brave, and so
tough. I never in a million years would have thought she could fight
the way she did and come through it so beautifully. For the rest of
her life, when she confronts things that look difficult, we can point
to this and say "You can do this Stephanie, you've done much more
difficult things before." My daughter is my hero, and she always will
be.
Katheen Copyright(c)2002-Katheen
Hearts Of Hope United~
Feature Children
& Their Guest Book