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!