Amy Lanning was our featured speaker at our Mended Little Hearts meeting on June 18, 2008, at Children's Memorial Hospital of Chicago. There were about 30 people in attendance, inluding steady members, new members, family and friends.
Video to follow! Thanks to Eric for the photos!
Amy kindly supplied us with the text of her speech which we share here with you:
"Good Evening, my name is Amy Lanning and I am proud to tell you that I am a Congenital Heart Defect survivor...
...As you might have guessed I have quite the complicated medical history; it is for this reason that I am here today to share with you my experiences growing up with CHD. I was born with Double Outlet Right Ventricle, Hypoplastic Left Heart Syndrome along with a few other, additional heart defects. As unfortunate as my diagnosis would come to be I must admit that I was undoubtedly fortunate in a few other areas. The first would be that I was lucky to be surrounded by families, who, over the course of my lifetime, have supported me throughout every one of my CHD struggles.
I was born in October of 1978 in Evanston, IL. At first I was
thought to be an entirely normal and healthy baby girl. However it
would become clear over the next two months that something was not
right. The first sign that something might be wrong was a significant
lack of appetite. My parents tell me that I simply wouldn’t eat and no
one knew why. Of course “not eating” soon turned into “not growing” and
my parents we’re now beginning to worry. Shortly after while on a trip
to visit my Grandmother in Iowa, my father was startled when my grandma
told him that she thought I looked a “little blue” and urged him to get
me to a doctor to have me checked out. When we got back from Iowa it
was now my Mother’s parents who mentioned that I was discolored and
needed to get a doctor to see what was wrong. With the all the concern
for my discoloration my parents immediately took me to the pediatrician
to see what could be wrong. At that point, the doctor diagnosed me as a
“cyanotic (or blue) baby” and strongly urged my parents to make an
emergency appointment here at Children’s Memorial Hospital.
Upon
arrival at Children’s, the doctors and nurses rushed to perform tests
and try to solve the puzzle of what was wrong with me. My diagnosis
came quickly and I was rushed into emergency surgery only hours after
first arriving at Children’s. The surgery performed that day was the
Cooley Shunt procedure, which was only a temporary fix designed to be
able to provide my body with more oxygen and better circulation. This
surgery lasted several stressful hours but at the end of the day it was
unanimous, the surgery had been a success. My parents were allowed to
take me home just a few days later and my grandparents were thrilled
about my newfound pink complexion.
Now that my conditions had been properly diagnosed the doctors at
Children’s worked with my parents to plan a strategy that would offer
me the best shot for a normal, healthy life. Over the next eight years
I would have three more operations, all of them performed here at
Children’s. The first of these three was the AP Window at age 2,
followed by the Glenn procedure when I was 6, and finally the Fontan
operation at age 8. Collectively these surgeries all helped corrected
my defects. My blood circulation and oxygen levels improved, my
exercise tolerance increased, and I was coming closer and closer to my
parent’s dream of being a healthy, normal child.
To be honest with you I must admit that I really do not remember a lot
about my surgeries. I think this may be because, as a child, I was
simply unable to comprehend the severity of my situation. I knew the
surgeries were required for me to “feel better”, but I also remember
being offered choice of whether or not to have them.
Looking back though, I do have to smile because I had the doctors
here at Children’s in my corner, and the support of my family at home.
Maybe my inability to worry about it all was really a blessing in
disguise.
I do however want to share with you an experience that came after
my fourth surgery. When I arrived to Children’s the day before the
surgery; the nurses took the time to perform a private puppet show,
just for me, to prepare me for what I would experience before, during
and after the surgery. In this puppet show they told me I had no reason
to be scared of the doctor; because although I couldn’t see it, he was
smiling under the mask. When I asked “How can I tell if he is smiling
if he is wearing a mask?” they told me I would be able to “see it in
his eyes”. This in turn made me smile and I remember it being a huge
comfort at the time. When the time for my surgery came I looked up at
the doctor, mask and all, and they were right – I could see the smile
in his eyes. Maybe that is why, even to this day, when someone gives me
a smile, I always watch their eyes to see if it is genuine.
After the Fontan, I have to say I had considered myself “cured” and
over the next twenty years of my life I worked hard to become a dancer,
running and jumping all over the stage with the best of them. I was
also able to sing with an amazing choir; belting out songs that require
an amazing amount of breath control. In these twenty years I was also
able to graduate college, work full time and live a very normal life,
especially in contrast to my first eight years and multiple surgeries.
This would all change once again when I turned 21; suddenly I began
experiencing multiple episodes of tachycardia. As a result I had to
make several trips back to Children’s for additional checkups,
procedures and cardiac caths. At that time the doctors decided that I
would need a pacemaker to help control my continuous arrhythmias. While
this did help control the arrhythmias somewhat, the doctors would still
need to perform ablation procedures over the next few years to help
control my ongoing palpitations. During this time, I felt my health
deteriorating; I was no longer able to do the things I loved. I wasn’t
able to exercise without fear of my heart racing. I found myself
completely exhausted after an eight hour work day and had absolutely no
energy to put into a social life. After six years of trying
unsuccessfully to control my arrhythmias my doctors told me I would
need to have a fifth surgery; the Fontan Revision. I remember being so
upset, so angry! How was it that I would need to go through yet another
surgery? I had come to be quite proud of living the last twenty years
without the need to go through another open heart surgery.
While getting ready for this next operation I experienced a lot of
anger. I pushed my friends away and tried to hide my emotions from my
family. I know that my family had gone through a lot with me as a child
and I was dreading rehashing old memories for them. This time was
different however, this time I could try to be strong for them - like
they had been strong for me as a child. This time was also different
because I was now an adult - and I no longer had the luxury of not
understanding the severity of the situation. They say that each cloud
has a silver lining and my silver lining was knowing that I would be
able to have my surgery here at Children’s Memorial even though I was
28 years old.
After the surgery I spent a week recovering in my very own ICU room
and another week in an individual room on the 5th floor. Although
friends and family came to visit me often I felt pretty isolated and
alone. The nurses and doctors were every bit as wonderful as I had
remembered; although I did find myself secretly wishing for a puppet
show or two. I was finally able to come home after a few weeks time.
Once home I often found myself tired and weak, but I knew as time
passed my body would become strong again. I was in a great deal of pain
most days. Not only physical pain but also the pain that comes with the
sudden loss of my independence. It was quite frustrating to have to
move back in with my parents, where I would once again have to count on
them to support me.
It has now been over two years since my surgery and I cannot begin
to tell you how blessed I have been to receive the medical expertise
that Children’s provides. My attitude towards life has completely
changed. The anger that I once felt is gone and has been replaced with
joy. No longer do I come home from work and collapse on the sofa. I am
now able to exercise again, I am now able to sing again. I have the
energy I need to be more social and make new friends. In fact, when I
meet new people and they find out that I have had five heart surgeries,
at first they do not believe me. When I tell them my story, they are
not only surprised but they are truly impressed at how I have been able
to overcome so much adversity and still become a successful vocalist,
business woman and dancer.
One of the reasons I am able to stand in front of you today is
because of all of the doctors and nurses that have treated me at
Children’s Memorial Hospital. We are so fortunate to have such a
dedicated team who continue to care for both patients and their
families. And since the first generation of CHD patients are now
adults, we are able to look to them to treat us and guide us through
adulthood while living with a Congenital Heart Defect. Another reason
is due to the amazing love and support that my family has given me.
They never treated me as though I was different; they pushed me to be
great and allowed me to accomplish things that I wouldn’t have been
able to do without them backing me every step of the way.
As I look back I have to say that growing up with a Congenital
Heart Defect has made me a stronger, better person then I might have
been had I been born completely healthy. All of the pain and scars,
along with the emotional peaks and valleys, have helped mold me into
the person I am today – an accomplished dancer, singer and business
woman. I feel truly honored and blessed to be able to share my story
with each and every one of you; the parents who will struggle with
raising a child with CHD. I can assure you that very few of your
challenges will be easy, but I think I speak for my entire family when
I say it will be worth it.
Thank you."
Amy Lanning
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