Congenital Heart Disease

Congenital Heart Disease (CHD) : A type of malformation in one or more structures of the heart or blood vessels that occurs before birth

Congenital Heart Statistics:
1. It is the number one birth defect
2. 40,000 babies are born with this disease each year
3. 8-10 out of 1000 babies are born with CHD
4. It is the leading cause of defect-related deaths in children (Nearly twice as many kids die from CHD in the U.S. each year as die from all forms of childhood cancers combined

Types of CHD:
Ventrical Septal Defect: A hole in the wall dividing the lower two chambers of the heart

Dextrocardia: Where the heart is on the right side of the body instead of the left

Pulmonary Atresia: Where the pulmonary valve, located between the right ventricle and pulmonary artery is not formed properly. The valve is completely closed, which stops the outflow of blood from the heart to the lungs.

Tetralogy of Fallot: Where the right side of the heart does not develop properly. The parts of the heart affected are the pulmonary valve, right ventricle, and the ventricular septum.

Hypoplastic Left Heart Syndrome: Where the left side of the heart does not develop properly. The parts of the heart that are affected are the mitral valve, the left ventricle, the aortic valve, and the aorta.

Camp Taylor

“Pills and pacemakers keep these kids alive, but Camp Taylor lets them live.”-Kimberly Gamino

What is Camp Taylor Hawaii?
Camp Taylor is a free camp for families who have children with heart disease. It is a camp started in California by Kimberly Gamino, who's son was born with heart disease. It allows many children the one place in the whole world where they feel normal. Two years ago the camp was brought to Hawaii. Teen mentors who have heart disease come down from California and mentor kids from Hawaii with this condition. It is an amazing camp that touches many lives so please donate to make this camp possible!

Camp Taylor website:
http://www.kidsheartcamp.org/

DONATE TO CAMP TAYLOR:
http://www.firstgiving.com/kardiackids

New Meaning

Kardiac Kids

Just Who You Are

Just Who You Are Lyrics

I know there’s times
You want to run away
Sometimes you hurt
But it will be okay

Through it all,
You will find your way

I know there’s times
The pain is hard to bear
You feel you can’t
Go on anymore

But just remember
And just believe
You can make it through anything

You’re stronger than you’ve ever been
Never be afraid of standing out
Be just who you are

You may be different from the other kids
Pacemakers, medicines, and battle scars,
But its part of who you are
Just know that you're
Never Alone
I have been there too
Your strength will guide you through

No matter what
We're always on your side
If you fall down
We'll pick you up again

You’re stronger than you’ve ever been now
Never be afraid of standing out
Be just who you are

You may be different from the other kids
Pacemakers, medicines, and battle scars,
But its part of who you are

Don’t let anyone
Bring you down
You’ve been through so much
Just keep fighting
Just keep fighting

You’re stronger than you’ve ever been now
Never be afraid of standing out
Be just who you
Be just who you are

You may be different from the other kids
Pacemakers, medicines, and battle scars,
But its part of who you are

You’re stronger than you’ve ever been now
Never be afraid of standing out
Be just who you are
Who you are

You may be different from the other kids
Pacemakers, medicines, and battle scars
But its part of who you are
Be just who you are

I Believe...

I believe that children with heart disease are special and God put them here on Earth for a reason. I also believe that these children have resilience and strength, and can bounce back from anything life throws at them. I believe that they are meant to inspire others and despite some extra challenges they may face, they can achieve their dreams just like anyone else.
When I did the interview for my project I asked, “If you could change having heart disease, would you?” I was surprised to here that both the children and parents said that they would never change a thing. Many of the parents said that they thought everything happens for a reason and even though their child may have heart disease, they love them no matter what. Another parent said that they couldn’t imagine a different lifestyle and life without heart kids would be boring. They also felt their child having this condition is one of the reasons that would bring their family closer together. As I observed the families, I could feel the love they had for each other and just how blessed they felt to have their child. For the parents, their kids mean everything to them. They are their parent’s bundle of joy and love of their life. These children have the power to spread their love and sparkle of life to everyone around them.
I think the kids have come to realize that having heart disease is just a part of who they are. It’s taught them to live with compassion and given them strength, strength to fight and to survive. Without this resilience, many of these kids would probably have died, because let me tell you, these kids have gone through a lot, both physically and mentally. They have physically endured doctors visits, hospital stays, medicines, catheters, open-heart surgeries, scars, feeding tubes, stents, and pace makers. They have also mentally overcome struggling to fit in, classmates teasing them, feeling different and left out, not being able to keep up with their friends from fatigue, and people picking out things they can and cannot do. Yet through it all, they stand tall. Their inner strength inspires others. One of the parents said, “Just watching how strong my son is, has made me stronger too.”
Though it is very challenging to be a child living with this disease, if these children never had their medical conditions, the families I talked to would never have met each other. They met through a group called Kardiac Kids, which is a support group for families who have children with heart disease. The four families that I spoke with became extremely close and get together almost every week. I’ve seen with my own eyes the strength of the bond they share. They understand each other and what each other has gone through. They support each other thorough hard times and can relate on a level like old friends or close family. Despite the struggles they face daily, they enjoy life to the fullest. Because the kids cannot engage in extreme physical activities and sports, they put together a singing and dance group called the Mini Heartbeats. I’ve gone to some of their get togethers and these people party like no other! They sing, laugh, eat, and dance the night away! As Keegan, one of the heart kids said, “If we want to dance, we will. We're trying to prove people wrong. We're going to go out there and we're going to dance." God couldn’t have hand picked a more perfectly matched four families than these to have met.
Though all four of these families are not the wealthiest bunch, what they lack in money they make up in heart. There’s an annual heart camp every year, Camp Taylor, and lots of money is needed to fund this camp. These four families are extremely motivated and fight for the camp to happen every year. They fundraise and do everything from garage sales to setting up booths and fundraising websites. Their hard work allows this camp to be held for their families and for other “heart” families.
One of my favorite quotes from Camp Taylor is “Pills and pacemakers keep these kids alive, but Camp Taylor lets them live!” This camp is one of the single places these kids feel completely normal in. It’s a safe haven, a world away from their daily trials and tribulations. It is a camp created just for them, where it’s normal to have a long, zipper scar across your chest, it’s normal to take daily medications, and it’s normal to get tired easily. As one of the camp members said, “When I am at Camp Taylor, I don’t feel like I am the only one with heart problems. I can just be in my own skin and not feel embarrassed about my body.” Before these kids go to this camp, many of them don’t know anyone else with their same condition and feel very alone. When they look around camp and see all the other kids just like them, there’s an immediate connection because they know they’ve gone through similar life experiences and know what it feels like. Ryan Russell, a camp mentor said, “Being part of Camp Taylor has given me a new found sense of self. It has made me comfortable with my disease, no longer alone. I now belong to a community where I most definitely belong, to a unique group of people very few can relate to. People can say they understand what my family and I have been through, but they can’t possibly. Camp Taylor lets you surround yourself with people who “know” what we’ve been through, even if they don’t actually say it.” Camp Taylor gives these kids a place where there’s people they can count on who have gone through similar experiences. Camp Taylor also allows these kids to accomplish things they never thought possible such as a ropes course. People always tell them what they are incapable of or shouldn’t be doing, but at camp they are finally told, “Yeah, go ahead and do it!” It is a place that encourages them to do all they can and helps them to believe they can achieve their dreams.
Though most children with heart disease have endured far more then most will in a lifetime, they still hold on and stand strong. Activities and groups like Camp Taylor, Mini Heartbeats, and Kardiac Kids lets them live their life out to the fullest. I believe that they were given this medical problem as a source of inspiration for all that witness their fight and resilience. Though these kids may never be pro athletes or win a Super-bowl, they’re already winners. They have beaten death and have lived to tell their story and rejoice in their victory.

New Life

A small butterfly breaks through its cocoon
Into it’s fresh undiscovered new life
Gradually transforming under the bright moon
I watch it dance to the sound of a fife

My eyes gently close as I drift away
Awakening to rays of streaming light
Captivating melodies dance and play
A beautiful woman garnished in white

Her aquamarine eyes softly glisten
Against her placid smooth ivory skin
She takes my hand as time stops to listen
Gliding through the air, my new life begins

Now the heavenly spirit casts its spell
I’m dancing alongside with the angels

New Life

In my sonnet, “New Life”, I wanted to show the cycle of life. Even though we are all going to die, it doesn’t mean that we are gone forever. Our spirit can still live on into “a fresh undiscovered new life.” Through my poem I also wanted to capture a tiny glimpse of how I imagined heaven to be.
I started my poem with the metaphor of a butterfly. It is a miracle of nature that everyone is familiar with. By showing “A small butterfly breaking through its cocoon” and placing it in a magical setting “under the bright moon” with dance and music, it pulls the reader into a fantasy, but a fantasy that is still very real. It allows you to see the butterfly’s transformation and starting a new beginning. Through using the butterfly I wanted to show how something like a simple caterpillar can transform into something as beautiful as a butterfly. Though the caterpillar’s life comes to a close, a new chapter of its life begins. This remains true for people as well. As our human lives must come to an end, a new even better life awaits us, which I think is in heaven.
In my second stanza I show myself dying and awakening to heaven. “My eyes gently close as I drift away”. Though in this line it shows me passing away, I wanted it to seem that it wasn’t a bad, scary thing. I wanted to show that I was at peace when I died, that I was satisfied with the life I had lived, and that was ready to take on a new chapter. Then as I “awaken to rays of streaming light”, it shows me waking up into heaven. The bright light and “captivating melodies” are just a glimpse of how I imagine heaven to be. I imagine heaven to be a glorious, pure place, where there is no hate, no fear, and no crime, just a place full of happiness and love. The transformation to my death, with light, music, and dance, is set as a fantasy similar to the birth of the butterfly in the first stanza. Then in the last line of the stanza, I see “a beautiful woman garnished in white”, which represents an angel that’s there in heaven, sent to greet you. I wanted to add an angel into my poem because I think I had a personal experience with one. When I was little I had to go through heart surgery. My mom said that when I woke up, I spoke of a lady dressed in white that was talking to me throughout the surgery, letting me know that everything was going to be alright.
In my third stanza I tried to show how beautiful this angel is, “Her aquamarine eyes softly glisten, against her placid smooth ivory skin.” I believe that in heaven your outer beauty is reflected by the goodness of your heart and soul. It is not just luck of the draw or a reflection of your parents like it is on earth. Then in the second part of the stanza, “She takes my hand as time stops to listen.” I wanted to show that this was such an amazing moment, for me nothing else seems to matter, my worries are melted away, and time just seems to stop. Then as we’re “gliding through the air”, it’s almost like we’re dancing through the heavens. This represents a fresh start and my new life beginning.
For the end of my poem I show “the heavenly sprit casts its spell.” This means that it’s almost like God’s put a spell on me and I’ve been entranced by this beautiful place and the amazing spirits around me. In the line, “I’m dancing along side with the angels”, I wanted to capture the joy of heaven through a dance with the angels. Throughout the course of the poem I share how life and death are not so different, and how I have transformed from my human self to a new spirit in heaven, just like the simple caterpillar transformed into a beautiful butterfly.

Over the Rainbow

My free choice book is “Please Don’t Die,” by Lurlene McDaniel. It takes place at the Jenny House, which is a place where children and teens that are facing medical challenges can stay for the summer. The story focuses on four girls who are put into the same room at the Jenny House. There is Katie, who has received a heart transplant and is the oldest. She is like the “big sister” to the other girls. Then there’s Amanda who has leukemia, Chelsea, who is a candidate for a heart transplant, and Lacey who is diabetic. Throughout the book you watch as the four girls face challenges, discover new things, and bond with each other. This is shown through the symbol of a rainbow and sunset, which runs through the story. The rainbow and sunset are shown as something not only beautiful, but as an escape, a dream place, and a sign that life goes on.

In the beginning of the book, Amanda takes Lacey, Chelsea, and Katie to a place she finds in the woods. They decide that this place would be their own secret place that no one else knows about. While they are sitting there, the girls see a magnificent sunset. During that magical moment, in a place all their own, the setting sun brings them closer together and touches each of them. It’s special because all of the girls feel they may never be able to share a moment with each other like that again. The sunset is so beautiful they get lost in it, and forget about their problems. After they see the sunset, things change between the girls. None of them never really say anything about it, but you can just tell. It is an unspeakable bond they share. Though they are all different in age, personality, looks, and medical conditions, they are all able to share something. They all know how it feels to be stuck in a hospital. They all know what it’s like to be a little “different” from everyone else and share similar struggles. They are able to relate to one another on a level that no one else can, not even their parents or their friends back home. Whenever they are feeling down or just want to be with each other, they can escape to their special place and just watch the sunset. For that moment in time, the world seems majestic and so much bigger then their problems. Their sadness melts away and turns into a feeling of awe and hope.

Towards the middle of the book, Amanda’s leukemia returns and she has to go to the hospital. The three other girls go to visit her. As they ride in the car, Katie gazes out the window and wishes that they could be heading to somewhere over the rainbow, instead of the reality of hospitals and doctors. The rainbow is a dream place for the girls, a place where no one hurts, where they can live “normally”, and don’t have any restrictions that hold them back.

As the book comes to a close, Amanda’s leukemia worsens. She is put into isolation, surrounded by white walls and tubes sprawling from her body. You can almost go insane there. While she’s in the hospital she receives a gift: a mobile of the sun, the moon, the stars, and a rainbow. The vision of the rainbow on the mobile is what Amanda uses to escape and forget the pain she’s in. Watching the mobile, her imagination runs wild to the dream place, where she can fly over the rainbow. Amanda’s pain is finally gone as she reaches the rainbow. The three other girls go to their special place because they are feeling down from the loss of their good friend. As they look up to the sky, they see a rainbow shimmering across the sky. Right then, they can feel Amanda looking at them and realize that Amanda has found her place over the rainbow.

Throughout my book the theme of the rainbow and sunset run through the story. Both the sunset and the rainbow are beautiful, shared experiences that the girls are able to lose themselves in and escape their problems. The sunset is a powerful symbol because it brings the four girls together and leads to their unspeakable bond. The theme of the rainbow that streams through the story shows us that life goes on. The rainbow also symbolizes the beauty of life and that after you die, there’s something even more beautiful waiting for you!

Taylor's Fight

Kapiolani Commercial (with Taylor!)

Inspirational Paper

Taylor’s Fight
Sometimes life seems unfair and you think, “Why me? Why do I have to go through this?” Well, I wish I could tell you, but the plain fact is that’s just the way it is. Life’s not fair. It’s not fair that some children go hungry. It’s not fair that innocent people get killed. It’s not fair that I lost my best friend or my dog died. But if you look at the situation differently, why not you? I guess it’s hard to see any good come out of a challenging situation, but after you experience the difficult times, take some time and step back. You may find a purpose or reason behind your pain. Maybe the hard times and bumps along the road will make you stronger or maybe it can give you a different outlook on life. Maybe your situation will inspire someone. Living and surviving through these difficult experiences makes you, you. And after all, if we didn’t have challenges throughout our life, we wouldn’t be able to appreciate the truly special moments presented to us.
When I was born, my doctors thought I was a perfectly healthy baby. But a day later, a doctor noticed my heartbeat was a little different. Instead of hearing a normal thumping beat, he heard a swooshing sound. Later, the doctors diagnosed me with Ventrical Septal Defect (VSD), which is a hole in the heart. Because the hole was too big to close on its own, doctors said I would need open-heart surgery to live a healthy, “normal” life. Many difficulties came with having a heart problem. Prior to the surgery, I didn’t eat, sleep, or grow very well. I was always fussy. But the surgery was very successful. A bulletproof patch covers the hole and now my heart beats like the thump of a drum.
After surgery, challenges still lay ahead. I was scared to sleep. “Don’t close your eyes!” I’d tell my mom. I was afraid she would never wake up. If I died I worried, “who would I know in heaven?” My mom decided to take me to church. One day, driving home from Sunday school I said from my car seat, “Mommy, I’m not afraid to die anymore, if I do, I’m going to live with Jesus. I’ll wait for you in heaven!” When Kindergarten came, it posed more challenges for me. I took ballet lessons and all of the girls would change together. Girls questioned the long scar I had across my chest. It embarrassed me and I actually ended up quitting ballet.
Now that I look at my situation, despite the hard times, I’m glad I was given a heart defect. It opened up different doors in my life that I don’t think I would’ve seen otherwise. It brought me to God and it taught me to be a fighter. It showed me how to overcome teasing and not let a scar affect me. Now I see my scar as more of a battle scar, something that makes me a little different from everyone else. It’s allowed me to attend some awesome events and be a part of a group called Kardiac kids, a group for children with heart disease. It’s also allowed me to attend Camp Taylor, a camp for the families of children with heart disease, and it’s given me the opportunity to meet professional football players. One of the best things though, is my heart defect has led me to hear some truly inspirational stories and has brought me to some amazing people.
This weekend I was invited to sing with Henry Kapono and a bunch of other children who have been or are patients of Kapiolani hospital. It was an event to celebrate the hospital’s 100th birthday. They were having a dinner in honor of the hospital and many important people would be attending. At first I didn’t really want to go, I was nervous because I didn’t know anybody. I hate that awkward feeling where you don’t know anyone, so you don’t know what to do with yourself.
The event was held at the Hawaii Convention Center. They had two rooms set up, one for the actual dinner, and one for us kids to play in. Our room was huge. Tables topped with markers, papers, puzzles, and all sorts of things were laid out throughout the room. I sat quietly at one of the tables set up to decorate purses. I got that awkward feeling, and I didn’t feel like being there anymore. Then they handed out t-shirts with what our condition was written across the front of it. Mine said in bold words, OPEN HEART SURGERY. As I looked around, kids had all sorts of medical conditions ranging from cancer to heart disease to being premature babies, and living with diabetes. Then we were called out to greet the guests. The guests arrived, coming up the escalators wearing very expensive looking clothing. I saw some people I could recognize like Neil Abercrombie, the governor, and some doctors. Some of them shook our hands or gave us a high five. Others asked for our stories. After greeting the guests for a while, I became bored. I saw a really cute little girl standing by herself. I noticed that the shirt she was wearing said, BEATING LEUKEMIA. You could tell too, because she didn’t have much hair. I went over to go talk to her.
“Hey, I’m Cara. What’s your name?”
“Hi, I’m Taylor,” she said shyly.
I asked her a little about herself and then I asked her if she knew any hand games. Her face lit up. As soon as she smiled, something about it lit up my heart. We started playing “I went to a Chinese Restaurant.” Then we finished greeting the guests and went back inside the room to eat dinner. After dinner I saw Taylor again. I asked her if she wanted to come draw a picture with me. She showed me a picture of a dog she drew for her dad. Then she came over and started drawing some flowers. I drew a caterpillar on the side and then she copied. Taylor started drawing faces, making sure each one had a dot on the middle of them.
“I like to put a zit on all of them!” she said as she laughed.
Then I made a dog out of paper. I drew a red bow on the top of its head and gave it to her.
“How did you know I wanted a bow!” she said. “Oh, wait you forgot something, he needs to breathe!”
Taylor drew huge nostrils on the doggy’s nose. She smiled proudly at the drawing, and then asked me to get her a paper.
“Don’t look! I’m making you something!” she said.
“I’m not looking” I replied. Every few seconds she’d tell me,
“Don’t look, don’t look!” as she colored away.
When she was done she handed me her drawing. It was a dog, with a red bow of course! Then she found a beanbag and we started playing toss. She was so full of energy.
“My daddy taught me how to do this!” she beamed as she threw the beanbag under her leg.
As she showed me all of her tricks, I looked at her in awe, wondering how she was so full of life. She didn’t let her leukemia stop her one bit! Then a little girl came over and stole our beanbag! I was so mad, but it didn’t bother Taylor. She started cartwheeling across the floor.
“Try it Cara!”
I tried to do my sad attempt of a cartwheel. Taylor told me about how she was taking gymnastics. She showed me her splits and asked me to do a bridge. She started doing all these fancy jumps. Then she told me all kinds of stories. She shared with me about the commercial she was in for Kapiolani hospital, and how she got to choose her picture in it. She told me she chose one from her family trip to Kauai on her sixth birthday. She also told me all about her dad and how he used to play football and how he surfs. You could tell she really loves him. Taylor reminded me of myself in some ways. We’re both very quiet when we first meet people, but after we get to know them, there’s no stopping us!
Then they called all the kids over to practice our Henry Kapono songs, which were “Friends” and “Good Times”. She was in the row in front of me. Every so often she would look back and smile at me. I would smile and scrunch my nose.
The best moment of the night was after our performance with Henry Kapono. As soon as she saw me, she came running straight into my arms! “Cara!” she beamed. She wrapped her arms around my waist, and didn’t let go of me the rest of the night! By the end of the event, I didn’t want to say good-bye to her. She gave me a big hug and then went off with her dad. She left something me something special though, something you can't buy. She left me her love and sparkle of life. It’s amazing how just a small girl touched my heart. Her desire to fight through her leukemia left me in awe. What’s more is she probably would never have any idea that she left that kind of mark in my heart. She was just being Taylor.
Taylor is just your typical six-year-old girl who loves life. The only difference is she’s had a few more bumps along her path. She hasn’t let that stop her though! Maybe it actually makes her stronger! She is a small girl with a big heart, and despite her leukemia she still lives and celebrates life to the fullest. It’s crazy how a little girl like Taylor is fighting so hard to live and making the best of it, when many of us go through our lives complaining at little things and wishing our lives were different. So the next time you find yourself grumbling that you have to go to school or you’re not having a good day, the next time you feel life seems unfair and you think, “Why me?,” just stop and take a second to remember, Taylor’s fight.