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Archive for Tuesday, October 10, 2006

With her heart on her sleeve

Bubbly’ 12-year-old perseveres through five childhood surgeries

October 10, 2006

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Editor's Note: Hannah Fowler, a seventh-grader at Central Junior High School, is a member of Angle, a Journal-World teen board. Fowler recently had her fifth open-heart surgery and wanted to share her story. Despite having a donor heart valve, she says she is a typical kid who carries on with life like others. It's one filled with love and faith.

Approximately one out of every 100 people are born with a heart defect. I am one of those people.

I am 12 years old, and I have had five open-heart surgeries. I was born with a blocked valve, and three days later, the doctors removed it. Blood was being sent every which way, so when I was 2 weeks old, they put in a donor valve.

Since then, I have had the donor valve replaced twice - when I was 3 and 5 years old - because I grew out of them. I never really thought about needing another surgery.

Latest surgery

I go in for a regular checkup every year at Children's Mercy Hospital in Overland Park, where they do an echocardiogram and electrocardiogram.

At my appointment in January, I remember my doctor, Dr. Kaine, took longer to come back with the results. He told me he wanted to see me again in six months. So, I went for an appointment in June and he told me he wanted to do a heart catheterization. This surprised me because I had only had to do this test once before.

Hannah Fowler spent a lot of time watching TV, sleeping and writing in her journal while recovering from her fifth open-heart surgery in August. Hannah, 12, was born with a blocked valve and had her first surgery when she was 3 days old.

Hannah Fowler spent a lot of time watching TV, sleeping and writing in her journal while recovering from her fifth open-heart surgery in August. Hannah, 12, was born with a blocked valve and had her first surgery when she was 3 days old.

On July 13, I had my heart cath and went home that night. He said he wanted to show the other doctors the test results. Not long after, he called and said he wanted to do an exercise test on July 27. This was to see how I did with physical activity compared to other kids my age.

He called again and said the doctors agreed I should move on with surgery.

My fifth surgery was scheduled for 9 a.m. Aug. 8, so I had to check in the day before.

I met the surgeon, anesthesiologist and nurses. The surgeon, Dr. Lolfand, was the same one who did my surgery when I was 5. He remembered me, but I didn't remember him. When he entered the room, he said that I looked "so sophisticated and petite sitting up on the table." I liked him right away.

They checked my blood pressure and measured my height and weight. They took a sample of blood from my arm, which stung a bit.

That night I stayed in the Ronald McDonald House, which is just down the street from the hospital. I stayed with my mom and dad, Susan and Shawn Fowler. One of the rooms had a computer, which I was really excited about because I could e-mail my friends before the surgery. They e-mailed me back that night with special messages such as "Be brave," "I will pray for you" and "Good luck."

The next morning my parents had to fill out tons of paperwork. After waiting for a while, the nurses came and escorted me to the operating room, where I changed into a hospital gown. My parents were able to go halfway down the hall with me. Dad told me he was proud of me for being so strong. We said "I love you" and gave each other big hugs. I started to go with the nurses but looked back one more time and gave them a wave. I could tell my mom was really trying not to cry.

Hannah Fowler, now 12, recovers from an open-heart surgery conducted when she was just 3 days old at Wesley Medical Center in Wichita to repair a blocked valve. Hannah's mother, Susan, calls her daughter a "miracle baby" because doctors didn't expect her to live past infancy.

Hannah Fowler, now 12, recovers from an open-heart surgery conducted when she was just 3 days old at Wesley Medical Center in Wichita to repair a blocked valve. Hannah's mother, Susan, calls her daughter a "miracle baby" because doctors didn't expect her to live past infancy.

My anxiety grew when I stepped into the operating room, but I was surrounded by familiar faces that I had seen the previous afternoon. Right when I lay down on the operating table, I had a huge knot in my stomach and my heart was pounding. The scent of gas to put me to sleep was bubble gum; I had picked it out the day before.

They had me count down from 10. I don't remember anything past three.

The recovery

Just as fast as it began, it was over - well, for me at least. My mom told me the surgery lasted five hours, but I swore I was only asleep for five minutes. I also was told that I had a fan club in the waiting room. Apparently, almost everyone in my family came to pray for me and my parents.

I was immediately sent to the intensive care unit. When I woke up, I was really out of it. I very vaguely remember my mom and dad stroking my hair and asking if I could hear them. I couldn't open my eyes, and I couldn't talk because of a tube in my mouth. So I nodded my head, just barely conscious. While I was still a little groggy, a couple of nurses came in and took out the IVs in my hand and neck. I wasn't able to feel anything because the gas that they gave me for the surgery made everything numb.

By evening, I started to become aware of my surroundings. I realized that my hands were tied down so I wouldn't pull out my breathing tube. Just as I was noticing this, the nurses came to pull the tube out. They told me to cough real hard and warned that I might gag. They pulled it out and I definitely gagged. I still couldn't talk, and my throat was very dry. I couldn't drink for about four hours, and then I was given a sponge to suck water out of.

I had a lot of wires and tubes connected to me. I had two chest tubes that collected fluids from around my heart. They were really gross, and when they drained them, it was really uncomfortable.

Hannah Fowler, now 12, is shown at Children's Mercy Hospital, Kansas City, Mo., where she had open-heart surgery at age 5. Her most recent surgery was in August.

Hannah Fowler, now 12, is shown at Children's Mercy Hospital, Kansas City, Mo., where she had open-heart surgery at age 5. Her most recent surgery was in August.

I finally was able to drink the next night and loved it. I wasn't really hungry until waking up about 1 a.m. and my dad was in the room watching TV. So I started watching TV with him, which was really fun because I don't usually get to do that. I told him I had a craving for chocolate pudding, so we ordered it by room service, and that was the first thing that I remember eating.

I was in the intensive care unit for three-and-a-half days before I was moved to a regular room. That day, my 5-year-old sister Abigail came up to visit. It was really scary for her to see me with all of these different tubes and wires connected to me. I wanted her to hug me, but of course, she couldn't really. She just sort of squeezed my arm and put her head on my shoulder.

When I had visitors, there were often gifts, too. As much as I enjoyed the gifts, seeing friends and family was a much better present. I'm so grateful for all of the love in my family.

My mom and dad are truly my heroes because of how strong they are. People tell me all the time that they can't believe how much faith in God a 12-year-old has. While that's definitely true, they're forgetting some of the most important people in my life who make that faith so much stronger - my parents.

A return home

Everyone expected me to go home on Sunday, but I left on Saturday, which was five days after the surgery.

It was hard to walk, and I pretty much laid around the house. I spent a lot of time watching TV, sleeping and writing in my journal. I also had to take sponge baths because I had bandages on my leg and chest area.

Almost a week after returning home, I went back to the hospital for a checkup and they said everything looked good and that I could slowly start returning to school, which had only been in session for three days. They told me that I couldn't participate in contact sports or physical activities until the end of this month.

I was ready to go back to school. I honestly have no idea why, but maybe it was because I was starting junior high. I was excited to meet new classmates and see my friends.

So the next Monday, I went to one class. Then I gradually went for longer periods. By the next week, I was back to attending a full day of school.

Today, I'm back to full health, although my breastbone has to heal a little longer.

I was hopeful that this would be my last surgery because I received an adult valve. But I just learned that the valve likely will only last for about seven years. I still plan to carry on like a normal kid and won't worry about another surgery.

No matter what people say about me, or what they think of me, I will always be Hannah. I'm just a fun-loving girl with a bubbly personality.

- Hannah Fowler is a member of Angle, the Journal-World's teen board.

Comments

cthobler 7 years, 6 months ago

Hannah, What a great story you wrote. Our family is so proud of you. You and Addi have alot in common, you are both such examples of strengh, love and fortitude. You give others the will to keep going, by just being yourselves. We love you very much, Terri, Cheryl and Addi

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Joni 7 years, 6 months ago

Hannah, I loved your story! It made me cry. Johann read it also, he thought you did a good job! We are so thankful you are such a strong girl! God made you that way for a reason. You have lots of potential! We love you, Joni and Johann

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maggyrita 7 years, 6 months ago

Hannah. I loved your story. It was so touching. You are a great kid coming from a great family. Enjoy junior high. I know you will do well. love, Margarite

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jonas 7 years, 6 months ago

The doctor must have been really bad if your hearts on your sleeve now. You seem to be coping really well, though.

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bearded_gnome 7 years, 6 months ago

God bless you, what a great story! if you wrote this I am quite impressed with your narrative ability girl.
God chooses some of us to experience special difficulties, so that we have a special perspective of God's love and providence. it is a unique choice by God for you to be a brave and cheerful girl.

I enjoyed your story very much. you're a great kid!

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Marion Lynn 7 years, 6 months ago

Thank you Hannah, for your story.

You have no idea how much this article has helped me through this day.

Perhaps one day I can do so much for another person.

By the way, I just printed your story for my Mom who is learning to use her brand new aluminum leg!

Thank you.

Marion.

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grandmah 7 years, 6 months ago

Hi Hannah, A great article, And yes you are our miricale grandchild. love, Grandma and Grandpa h

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believeinacure 7 years, 6 months ago

Hannah, what a complete miracle you truly are.

My son has a heart condition and received open heart surgery at 2 days old, very scary. He has pulmonary stenosis. We hope he will not need more surgery, however as the heart grows many times the valves do not grow along with it.

He is now 15, and receives yearly checkups at Children's Mercy as well with Dr. Rajan. The hospital is so amazing and truly remarkable things happen there each and every day.

Good luck to you Hannah and God bless you and your family.

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