Tuesday, July 3, 2012

Shone's Syndrome: A Heart Story

My eyes popped open, the room still dark around me.  I looked out my door and saw a light glowing down the hallway, I could hear my parents voices softly talking.

I climbed out of my bed and headed to the kitchen to join my parents.
"I was just about to wake you up." my mom said.
"I'm thirsty." I said
"I know but you aren't supposed to eat or drink anything."
"But I am really thirsty!" I begged

Maybe it was my big five-year-old eyes or maybe the enormity of what was about to happen but she gave in, letting me have a little apple juice.

After getting dressed we headed out to the car bags in tow; the sun barely beginning to make an appearance and began our drive.

I just remember bits and pieces after that.  I remember the bed with my own TV near the ceiling.  I remember being wheeled into the operating room, looking up and seeing the lights and masked doctors looking down at me just like in the TV shows and then it seemed like it was a couple of days later and they let me go down to the playroom in a wheel chair.  I felt so special being pushed in a wheel chair rolling up to a table to do some art projects.  I remember the boy a few rooms down with the broken arm who my mom and I would invite to play Old-Maid with us.   I always won.  I remember the food they would bring in with trays with a lid, lifting the lid to reveal my yummy meal- I always requested mashed potatoes.  The phone calls, balloons and cards from friends-- these are things I remember.

What I don't remember; I don't remember crying and having to be held down every time I needed a shot.  I don't remember my mom having to sneak out to eat while I slept as I would cry if she tried to leave.  I don't remember talking so much they kicked me out of the recovery room as they were afraid I would wake the others patients.  I don't remember how small the little chair that folded out into a miniature bed was that my mom slept on the entire week so she could stay with me.

What are these memories I speak of?  They are from my open heart surgery at five-years-old.

Yesterday when I was recapping my monthly #photoaday pictures a few of you said you did not realize I had surgery.  I think this is one of those things I have mentioned in passing while blogging but never really spoke of in detail.

I was born a healthy 9 lbs 1 oz.  Healthy, pink chubby and a full head of hair.
Me as a brand new baby
Overall I seemed okay- though my mom said I was scream like I was suffocating if she put a blanket over the baby carrier. But at 5 months- when most babies have doubled their weight and I only weighed 12 lbs 9 oz- they knew something was not right.  This is when they began to discover something was wrong with my heart.

I have what is technically called Shone's syndrome- which according to wikpedia: consists of a set of four cardiac defects: a supravalve mitral membrane (SVMM), parachute mitral valvesubaortic stenosis (membranous or muscular) and coarctation of the aorta. Essentially, it is both a left ventricular inflow and outflow obstruction.

My surgery at 5 was actually my second surgery; I also had surgery at 9 months old to fix the coarctation of the aorta and they tied off the ductus- but this was done with tubes through incisions in my legs.  My surgery at five was the one that left me with the scar down my entire chest and repaired my mitral valve.  They went into it believing that I would have to have my mitro-valve replaced when I turned 18.  My health before my surgery was very rocky. My mom said it seemed like every holiday I would be back in the hospital with pneumonia.
Me and my little sister about the age of my surgery
Well 27 years later and my heart is ticking away just fine. I do still have a murmur but I don't even notice this. I do not take any meds (just have to pre-medicate before going to the dentist with amoxicillin) and every time I see a new heart doctor they always ask who did my surgery as they did such an incredible job.  They monitored my heart a little more closely during my pregnancies as that is a high stress time for the heart- but thankfully my heart did just fine.

I think I have never blogged about it too often as I honestly don't think about it that much and that is thanks to my mother.  After my surgery (and probably before) she did not baby me or tell me I had to be careful and shouldn't do things as it might be hard on my heart and even though I was seeing a heart doctor yearly as a child it just felt like that was how it always was and it wasn't a big deal.  So thanks to some great doctors and a great mother my heart is stronger than ever.

35 comments:

  1. What a scary thing to go through as parents and as a child. So glad your heart is fine now. Thanks for sharing.

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  2. I'm sure that had to be so scary for your parents. It sounds like your mom is an incredible woman.

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  3. what a wonderful story of inspiration. not only did you survive but you are stronger and healthy for it and what a great mom to encourage you to be all you could.

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  4. It says a lot for your mom that she didn't let your heart define who you became. Instead of being all aobut the heart defect, you got to be you with this one quirk. Awesome!

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  5. {Melinda} What a miracle you are! My son has cystic fibrosis and he will never know all the prayer and hard work that went into keeping him healthy -- all the tears shed and the sleepless nights. That's just what Moms do. So glad he has a heavenly Father who has it all under control. :)

    Thanks for such an inspiring post!

    http://motheringfromscratch.com
    http://parentingconfessions.com

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  6. Your mom did a great thing by you. I don't know if I could have done things that way, if I was faced with that. And you are tough as nails girl! Love you!

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  7. Wow, how scary for your parents! But yey that you're doing GREAT!!

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    1. Man Emmy, thanks for sharing your story.....and just a side note...Now I see where your girls get their looks. You as a young girl look just like your girls now!

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  8. I'm glad you've told this story - I think a lot of us have gone through something and don't really talk about it. I know what you mean though ... I don't talk much about my heart "thing" because it's normal for me. It doesn't bother me! I'm glad you're doing so well since then, and hope it all continues!

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  9. I always knew you had heart surgery but I never knew the reason behind it. I am glad you told me... my medical mind likes that.

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  10. It's awesome that you only remember the good stuff. Your momma did a fantastic job.

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  11. Amazing. What a terrifying thing for you, and your family to go through. Sounds like you a phenomenal Mom for not making it bigger than you, not taking away your ability to enjoy life. So happy you are here and healthy!

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  12. Thank you for sharing your story. Glad your sweet heart is doing good.

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  13. What an amazing story. It's also amazing how our mind blocks out bad things like what you described!

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  14. What a story. It sounds like your mom was/is amazing. Thank you so much for sharing.

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  15. Wow, that is amazing! Your mom is amazing--not to let fear run your lives, but instead teach to live and do whatever you are capable of without fear. That is beautiful! I'm glad your surgeons did such a good job too! :-)

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  16. What a story! I'm glad you wrote a post about this. Maybe I am too nosy, but scars always seem to have a story associated with them. And I love to hear them.

    You have such a good mother. I'm not sure I would have been as strong as her, or as brave to let you do whatever you wanted. Good for her!

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  17. I was going to ask about that b/c I had no idea. What a miracle you are! I'm so glad you shared this with us and that you doing so amazing after having such a rough start as a child and having open heart surgery. I hate hearing about any babies having surgery :(

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  18. What a wonderful mother you have! How wonderful she made sure you never felt different. And what a compliment to the surgeon who operated on you. So glad your heart is doing well now. Modern medicine is amazing, isn't it?

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  19. Is is terrifying, as a mom, to watch your child go through scary health things (as you well know with Ryder). SO thankful for this God-blessed country where we have access to these amazing medical things. So thankful that God could use them to give you this life!

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  20. pretty awesome mom you have.

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  21. Ooh! Thanks for sharing yoru story. I too have Shones. I had a coarctation at 2 yrs old and was healthy for many many years (even running the chicago marathon in 2000)...then at 35 everything fell apart. I share my story here. http://shonessyndrome.org/

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  22. Ooh! Thanks for sharing yoru story. I too have Shones. I had a coarctation at 2 yrs old and was healthy for many many years (even running the chicago marathon in 2000)...then at 35 everything fell apart. I share my story here. http://shonessyndrome.org/

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  23. I had to go back into blog posts to catch up on this post. Thankfully you can't remember those hard times and your mom sounds like an angel for going through all of that.. I can't imagine my kids undergoing that kind of a surgery. I had an ear graph surgery around the same age but wow, your heart! Great post and love learning more about you.

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  24. Great story of good medicine and maybe some divine healing. So glad you are well and had no trouble while pregnant. I have a nephew who had heart surgery as a baby and now, at 27, is not doing so well.

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    1. Yes, definitely think there was some divine help in there too. So sorry to hear about your nephew, I hope he is able to get the help he needs and will be okay. What is wrong with his heart?

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  25. I shared this with my friend, whose daughter had open heart surgery a couple years ago. I love that you only have good memories from this time! I hope it will encourage her.

    I laughed about the blanket over the carseat- my littlest does that, too! He even did it yesterday when I was shielding his eyes from the sun. He'd much rather be looking out!

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    1. oh good! So glad you shared and I hope it brings her some comfort. When I was pregnant with my youngest my new heart doctor (as we had moved) was a bit fascinated by me and I became a guinea pig of sorts, he even wanted to write a paper about me! But anyway, as part of my appointments with him he sent me down to San Diego to the Children’s hospital there to get a specialized ultrasound. I was in the waiting room with so many parents there with their little kids obviously scared, confused, and going through a lot. I sat next to some young parents with a girl just six months old that had many of the same conditions as me. It gave them so much hope and peace to hear how I had been able to live a normal life, have kids, etc. That one moment made all of the extra appointments worth it for me, knowing I had been able to help that family when they needed it.

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    2. That is so sweet. My friend said it's going to take her a few reads to get through it but she loves reading these stories and can't wait to see it from her daughter's perspective.

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  26. This was so uplifting to hear. As a new and first-time mom to a 4 month old with Shones Complex, most of what I read are sad stories of short lives for those who are diagnosed with this. Your story gives me a glimmer of hope that my son may be able to live a full and happy life.

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  27. Thank you for sharing your story. My brother is now 27 and also has Shones Syndrome. I am currently pregnant and due to my brothers hx (as well as other congenital heart problems in my family) my obgyn wants me to have a specialist apt before my baby is born. I am wondering if you had any testing done on your baby while you were pregnant? Thanks again.

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    1. I had some specialized ultrasounds where they especially looked at the baby's heart, but no other testing than this. All three of my kids are heart problem free.

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  28. Thank you for sharing your story. My brother is now 27 and also has Shones Syndrome. I am currently pregnant and due to my brothers hx (as well as other congenital heart problems in my family) my obgyn wants me to have a specialist apt before my baby is born. I am wondering if you had any testing done on your baby while you were pregnant? Thanks again.

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