W hen you are born into a world with the odds stacked

against you, you have two ways of looking at it: you can
either let it consume you, or face it head on.
My name is Meghan Roswick and I was born with a congenital
heart defect called, Hypoplastic Left Heart Syndrome also referred
to as HLHS.
Diagnosis
Parents today often find out during pregnancy if their child has
HLHS – yet at the time I was born, my parents were not aware of
my diagnosis.
On October 7th, 1991, I was born weighing 8 lbs. 12 oz. Doctors had
given me a clean bill of health and sent me home just a few days
later.

At 7 days old, my mother noticed that I

seemed to be breathing funny and took me to
the emergency room. The nurse immediately
said, “I don’t like the look of this baby” and
whisked me away. They didn’t have the
equipment at the small town hospital I was at
to see what exactly was wrong with me. So, I
was taken to another hospital where,
ultimately, they diagnosed me with HLHS.
The diagnosis was very grim and the doctors
told my parents there were three options
available: a heart transplant, a three-step
surgical procedure, or to let nature take its
course through compassionate care. Doctors
told my parent that if it was their child, they Written and Photos
by: Meghan Roswick
would let nature take its course because it
Edited and Designed
would be near impossible for me to ever have
by: Taylor Pitcher
any sort of a normal life.
Surgery would never be able to do sports let alone walk a block
without oxygen.
There were not enough hearts for a transplant and the
three-step procedure was still considered experimental Living Life
(and to their knowledge all who had undergone operation,
About a year after my last surgery – when I was three and
were not doing well).
a half years old – I wanted to try gymnastics. My parents
My parents took a night to discuss the options with the were wary but consulted my surgeon and he said that I
family and then decided to go ahead with the three-step would set my own limits.
procedure and move me to
I instantly fell in love with the
Children’s Hospital of
Philadelphia where the
Strength does not sport and to everyone’s
surprise I was doing well and
inventor of the main procedure
was stationed.
come from physical keeping up for the most part. I
continued to do well (except
At 9 days of age, I had my capacity. It comes from keeping up during cardio
first open heart surgery, my conditioning was very difficult
second at 6 months, and my an indomitable will. for me). Most people’s hearts
third at 13 months. I was double; triple and quadruple
doing much better than doctors – Ghandi the amount of work it can do,
had anticipated, but then I went while mine can only double.
into congestive heart failure once again and needed a That means less oxygen in my blood and to my muscles,
fourth operation. ultimately causing me to tire much more easily.
After that fourth operation my future seemed to be Doctors had no clue how much stress exercising would
looking bright. Doctors were telling my parents to put on my heart, nor did they know how I was even able
channel my energies into the arts because they figured I to bring myself to exercise. They told my parents, “what

Photos: Page 1 - Meghan Roswick, Above - Meg Skydiving (Got HLHS?), Page 3 - Meg skiing in Oregon
Hypoplastic left heart syndrome (HLHS) is a birth defect that affects
normal blood flow through the heart. As the baby develops during
pregnancy, the left side of the heart does not form correctly.
Hypoplastic left heart syndrome is one type of congenital heart
defect. Congenital means present at birth. Because a baby with this
defect needs surgery or other procedures soon after birth, HLHS is
considered a critical congenital heart defect (CCHD).

Hypoplastic left heart syndrome affects a number of structures on the

left side of the heart that do not fully develop, for example:

The left ventricle is underdeveloped and too small.

The mitral valves is not formed or is very small.
The aortic valve is not formed or is very small.
The ascending portion of the aorta is underdeveloped or is too small.

Often, babies with hypoplastic left heart syndrome also have an atrial
septal defect, which is a hole between the left and right upper
chambers (atria) of the heart.

In a baby without a congenital heart defect, the right side of the heart
pumps oxygen-poor blood from the heart to the lungs. The left side of
the heart pumps oxygen-rich blood to the rest of the body. When a
baby is growing in a mother’s womb during pregnancy, there are two
small openings between the left and right sides of the heart: the patent
ductus arteriosus and the patent foramen ovale. Normally, these
openings will close a few days after birth.

In babies with hypoplastic left heart syndrome, the left side of the
heart cannot pump oxygen-rich blood to the body properly. During
the first few days of life for a baby with hypoplastic left heart
syndrome, the oxygen-rich blood bypasses the poorly functioning left
side of the heart through the patent ductus arteriosus and the patent
foramen ovale. The right side of the heart then pumps blood to both
the lungs and the rest of the body. However, among babies with
hypoplastic left heart syndrome, when these openings close, it
becomes hard for oxygen-rich blood to get to the rest of the body.

Center for Disease Control - https://www.cdc.gov/ncbddd/heartdefects/

hlhs.html
 Photos: Left - Meg soon after her third open heart surgery,
Below - Speaking at a CHD conference,
Right - Winning Nationals in Peurto Rico at about age 10.
she is doing is either the reason she
is doing well or it is going to kill
her.”
I struggled tremendously with my body becoming
exhausted so quickly, but I kept pushing and building up
my strength to the point where applying my skills would
be as effortless as possible. I would turn purple after
every floor routine and cardio exercise, but would
quickly regain my pink color after some rest. I struggled
between pushing myself and letting my body rest when it
needed to. I ultimately broke my body down and became
too injured to continue (not heart related).
It took a year to find my niche again in the world of
adaptive sports but I discovered skiing and the freedom
that comes along with it. I was a gymnast for 14 years. I
also played soccer, track, and ski-raced in high school.
Setting an Example
Now at 24 years old I am just about to start back up at
University of Cincinnati studying Neuroscience. Along
with my bachelors, I am also undergoing classes to get
my phlebotomy certificate. As for work, I am coaching
where I used to train at Cincinnati Gymnastics Academy
as the team level 4 floor coach. Aside from coaching, I
am a patient advocate and focus on the needs in cardiac
transitional care. I travel and speak at different events
and medical conferences on the patient perspective of
hospital care, as well as the importance of self-advocacy.
I am seen at Cincinnati Children’s Hospital yearly in the
ACHD clinic, however, I usually end up in the ER a few
times a year aside from my one scheduled visit.
Throughout my life I have had the opportunity to have a
multitude of moments of reflection after being faced with
the constant reality of death. For my entire life
hospitalizations, cardiac procedures, doctor’s visits, and
numerous tests have been a big part of my life. I have
had moments where I am scared I won’t walk out of the
hospital, or that this will be the cardiology visit where
they tell me that my heart is failing. It is very easy to
make my heart my identity,
but it is not. My heart defect
and strokes are a part of what makes me who I am; it is
not all that I am. however, I am grateful for these
experiences because I feel I truly understand the meaning
of life and really living. To me, quality of life is not
determined by your physical ability, it is determined by
how you choose to live your life.
After successfully taking up sports as I’ve progressed
through life, I’ve come to realize that I want to set an
example for younger kids with similar “defects” to
inspire them to believe that they have the possibility of
overcoming predisposed limits. As frustrating as it can
be to realize that you do, in fact, have limits – it is
always more rewarding to try and find out first hand just
where those limits are, instead of being immobilized by
the thought of them.
I choose to live my life by jumping out of airplanes and
taking cross-country road trips with only 36 hours of
planning time. I choose to move to Oregon for a summer
where I don’t know anyone just to spend my summer
skiing. I choose to live a life full of taken opportunities
instead of missed chances I choose to feel the adrenaline
pumping through my veins because I want to experience
life and redefine what quality of life truly is.
It would be easy for me to get trapped in a world of
constant worry over the uncertainty of my life.
Participating in sports and activities is my way of
escaping, breaking past limitation, and feeling as though
I conquered a small battle in a life-long fight.
For anyone who has felt trapped by the limits that
medical science has already set for them, I hope to
represent an example of a movement, beyond self-
imposed boundaries to a place of freedom and hope for
the future. “Strength does not come from physical
capacity. It comes from an indomitable will.” – Ghandi