The Heart

January 16, 2018
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The parents went to the doctor to check on the teeny tiny baby girl growing inside. The doctor checked on the baby - the little baby’s heart was not forming correctly.

The doctor met with the parents and he said, “Your daughter will be born with congenital heart disease. Your daughter will need open heart surgery.” Their heart dropped as those words hung in the air; nobody breathing. Silence.

He continued, “She also will live for some time with congestive heart failure until her heart is strong enough for open heart surgery. As you may or may not know, many of these children with congenital heart defects usually have down-syndrome as well. That is a lot to care for, and is a lifelong commitment. You have a few options here, and one of them is to terminate.”

The husband stood up, and in a booming voice said, “Sir, I am a Roman Catholic. That is not an option. If this is the baby that God wants us to have, then we will accept that, and love that baby and do our best to raise it. But that is not an option. “ And then, they left.

.    .     .

The baby was born in September. She weighed a little over 4 pounds. She was quickly whisked away into an intensive care unit. She remained there for a few weeks, then was able to go home. Every day she ingested about 10 different types of medicine, administered by her parents. Each week the nutritionist came to check on her and make sure she was healthy. Each week, the baby girl and her mother would go to the doctors for checks, and they would draw blood, causing the heel of the baby to be purple and swollen from being pricked so many times. Each day she slept, ate, and took her medicine. She looked like every other baby - except she was desperately awaiting a life saving surgery.

.    .    .

A year and half later she was finally strong enough for open heart surgery. The family went back and a world renowned surgeon performed the surgery. The family handed their tiny, screaming baby off to a man whom they hoped would save her life. She was crying and it broke their hearts, as there was nothing they could do. Would she be ok? Would she be the same? Would she live? Would the doctors care for her like they had? The family waited in agony for any word on how the surgery was going, or if this pain they were feeling was over yet. The surgery was successful. The little girl stayed in the hospital for about a month afterwards. She would lay like an animal with all 4 limbs strapped down to the bed so she wouldn’t be able to pull out the stitches that now lay across the upper half of her torso. Before her surgery she had just begun to talk. She would lay on the hospital bed and say in a raspy voice, barely audible,  “Dada….OUT!” Her microscopic pointer finger would reach up as far as it could, and point to the exit, then it would fall back down in exhaustion. She wanted to leave.

Each day that she was in the hospital, her parents would take a shuttle over in the early and late hours of the day, from the Ronald McDonald house, over to the Cleveland Clinic where their daughter was. Family would visit them all frequently. After about a month, she was able to return home. However, she still was on lots of medicine and under the careful watch of her cardiologist.

.    .    .

As she grew up, she was just like every other little girl. She learned her addition and subtraction facts, went to disney, ran through the sprinkler, played with dolls, and chased her dog around the yard.

Through the years, she has been able to grow up just like everyone else. She plays sports, goes to dances, sporting events, and goes on dates. As similar to everyone else as she is, she is also very different from them. The normalcy of her childhood was filled with lots of medicine...their house was never short on plastic medicine dispensers. Her childhood also included things other teens had never come close to experiencing. For example, she took medicine daily. She was used to being examined very closely by doctors. She was used to being scared to death, but having to lay there perfectly still in the unknown. She had spent many hours getting echocardiograms dones, as well as EKG’s. Her brain was used to being super alert for anything in her body that seemed abnormal. She got a flu shot every year because her immune system was weak. She also had a long scar down her chest from where her chest was ripped open during open heart surgery. She also had 4 other scars from where tubes were forced to be inserted into her stomach.

To others it may seem like her life is difficult, but to her it’s beautiful. To her, her life is perfect because that’s the only life she’s ever known. Some may think that she would want to change her life, but she wouldn’t. She has learned that everyone is fighting a battle that we do not know about and that we must be sensitive to others. She has also learned that we each have had struggles and no matter what we are faced with, we must stay positive and know that anything can be overcome, if we only have enough courage.

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