Monday, April 9, 2012

H is for Heart Transplant: What a different three years can make...

This was Bean three years ago this month.  Its tough to look at that picture.  At that point, Easter 2009, we were still in the hospital in Sacramento and they weren't quite sure what was going on - just that her heart was five times the size it should be and she was not responding well to the IV meds they had her put her on.  We spent that Easter in that hospital room.  I still have a coffee cup and stuffed bunny they brought around for all the parents and kids in the ICU.  That week was probably one of the hardest of my life.  Everything was so unclear and it just didn't seem like anyone could tell us exactly what to expect.


This was Bean yesterday - Easter 2012.  What a difference three years and a heart transplant makes! Bean got her new heart about three months after the above picture was taken.  We are forever thankful for the family that saw past their own grief to donate their babies heart to our baby.  We have not heard back from the donor family and we may never hear back from them, but hopefully they took some solace in knowing that they saved a life...perhaps many lives (if the other organs found homes in other babies).

But, I thought some of you might be interested in our learning more about heart transplants.  So, that is the subject of the rest of this post.

A heart transplant is an open heart surgery where a diseased heart is removed and a healthy heart from a donor is sewn into place.  Heart transplantation is only about 50 years old, with the first one being performed in 1967.  The process has come a long way since then, and according to Wikipedia about 3500 heart transplants are performed annually worldwide in 2007.  Infant heart transplants are more rare and more recent.  According to the Loma Linda University website, where the first infant transplant was performed, the first infant heart transplant of a human heart was in 1985.  According to Medscape Reference 350-400 pediatric heart transplants (in children 18 or younger) are performed annually, so only about 10% of the total heart transplants done each year are in children under 18, let alone infants.  Because of the relative recency of heart transplantation in infants, the statistics on survival, complications, etc. is limited.  But, the survival rates for younger recipients seem to be better than older recipients, which maybe a reflection of their ability to adjust their immune response system better.

Bean received her heart at Lucille Packard Children's Hospital and according to their heart transplant page they lead the nation in survival rates for one- and five-year outcomes and they have the largest group of child recipients who have survived longer than 25 years with a heart transplant!  Pretty good statistics.

Bean is currently on a drug regimen that requires us to administer a number of medications every morning and every evening.  She started out post-transplant on about 13 medications, but has been weaned off of all but five of them!  She will probably be on these five for the rest of her life.  She takes two immuno-suppressants, one blood pressure medicine, one anti-statin (lipitor) and fluoride because our water does not have fluoride in it.  All of them other than fluoride are liquid and are taken with a syringe - we draw up a measured amount and she takes it in her mouth.  The fluoride is a chewable.  She will, at some point, be able to switch over to pills, but for now, it is liquid and she has adjusted to taking them just fine.  Other than that, we have to get blood draws done to check her immuno-suppressant levels every once in a while.  We have to drive about 4 hours to get to Stanford for clinic appointments and biopsies to check for rejection about every three to six weeks.  Overall, her life is not that much different than any other three year old.  But, she is at risk of getting sick easier and staying sick longer, she obviously has ongoing medical appointments that others would not have to deal with and she suffers from some side effects of her medicine like diarrhea and stomach issues.

Overall, I can not think of a better outcome than we've had, considering how very sick she was as a baby.  I am so thankful that heart transplants have become as successful as they have for infant recipients and I'm thankful she was able to get a heart when she most needed one.  And we will continue to do our best to be one of the positive statistical results of heart transplantation!

13 comments:

  1. I can't wait to post something like this three years from last August. Bean is an amazing critter, and hopefully Charlie will be a success story too. :)

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  2. What an amazing story! So glad for medical technology!

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  3. this is an amazing story Sue and you have a very amazing little girl. My youngest was 16 weeks premature and at 3 weeks of age had to get surgery(PDA) to close and artery leading to his heart.
    I had to share your blog on my A.D.'s FAV 5 of the A to Z challenge today.
    http://adduling.wordpress.com/
    A.D.

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  4. Hi Sue, I'm glad I stopped by as this is a heart warming blog. Bean is adorable! Its amazing what our medical field can do today. And God Bless the donor family too. Maybe you will hear from them one day.

    i'm going to do a link back to your site on my post tomorrow as this is a very inspiration blog!

    Uh oh. I see your Word Verification (WV) is still on. I'm on a mission to rid the world of this unnecessary evil frustration! Please stop by my blog and select the How To Turn Off Your Word Verification tab and help make the world a better place one blog at a time.

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  5. I have a friend whose son died at 17 yrs old in a car accident. If it was an organ that could be donated the agreed to it. When asked how they could do it she said "Levi would've given his life for anybody. How could we NOT do it?" It took them a while, but they finally got to the point emotinally where they could meet some of the families. It very much helped in their healing process.

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  6. Your blog really touched my heart. I was so thrilled to see the picture of 'Bean' after the first photo. I can only imagine what you have been through. I commend your strength as a mom. I am glad I found your blog. Good health to you and yours.

    Sincerely,
    Robyn

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  7. Seeing 'Bean' strapped up with wires and leads reminds me of me own daughter - she was born 11 weeks premature, weighing 2lb 1oz and measuring just over 12". Although she didn't need surgery, she was in hospital for the first three months of her life - on a ventilator for six weeks in Guy's Hospital, London, and later moved to a local hospital nearer home.

    That was nearly 28 years ago - the only detrimental legacy is now rearing its head with a weakness of her retinas. Children born that early, that long ago, often had other problems or shortened life expectancy that the doctors are only now recognising premature retinopathy.

    I hope 'Bean' and her family have many happy years of wonder and excitement together as this little 'miracle' grows and thrives!

    Happy A-Z'ing!

    SueH I refuse to go quietly!
    Twitter - @Librarymaid

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  8. Such an amazing story, I'm glad you're little one is doing fine.

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  9. so glad she got through it okay. an inspiring story!
    Nutschell
    www.thewritingnut.com
    Happy A-Zing!

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  10. What an amazing story you have. Thank you for sharing what must be a difficult time for you. She is so sweet! I love her name! You might also enjoy my blog at www.dianeweidenbenner.com Happy blogging and keep sharing.

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  11. What an absolutely precious little girl you have there. I love your header photo.
    Thank God for modern technology and medicine.

    Stopping in via the A-Z blogging challenge.

    Bev @ Blue Velvet Vincent

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  12. Great story- So glad the outcome was good. I'm trying to visit all the A-Z Challenge Blogs this month. My alphabet is at myqualityday.blogspot.com

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  13. Hello.
    Visiting from the post A-Z Road Trip.

    Your baby girl is adorable. Best wishes for many more healthy years to come. Thanks for sharing.

    Thoughts Of Beauty In The Stillness Of Dawn...

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