Today has been… a day.
We met with the transplant team this morning, and Scott and I’s heads are both overwhelmed with information.
We have given the go ahead to do the transplant evaluation on Annabelle, which involves a lot of tests including a CT scan of her head, blood tests, a urine test, and a psych evaluation on Scott and I. I told them up front that we were crazy already… so at least they are forwarned!
I’m learning a ton of things I never knew before. 99% of it makes a lot of sense!
First, what we were told yesterday about having to have a retransplant every 10-15 years is not necessarily true. We are now told that they “hope” the new heart will last a life time.
The problem is, and this is where the discrepancy in opinions comes in, that no one really knows how long the heart will last. They first started doing heart transplants in babies in 1982. This was the year after I was born! It is frightening to know that if I’d have been born with what Annabelle has, they would have shook their heads, and sent me home to die.
Anyway, heart transplant’s in babies really picked up as a viable option closer to the late 80’s and into the 90’s, so most of the babies who had transplants are just now teenagers and in their early twenties. The data about how long a heart lasts is taken from these kids. And most of these kids have had to have a retransplant.
But they were the first ones. Medicine has changed since then. There are new and better medicines. Risks are less (although still great.) So no one can really know for all certainty how long a new heart will last for Annabelle.
The first thing I did not realize is how very selective they are in the heart transplant process. The baby must be in reasonably good health except for the heart. There must be a good chance for the baby to be able to grow up and be a fully functioning, productive member of society, and that there are no other health concerns that might hinder the child from living long-term.
As cruel as this might sound to refuse some children a spot on the “list”, it does, unfortunately, make sense. There are a lot of babies who need new hearts. Unfortunately (but thankfully…) there are not that many donor hearts available. They choose those who they put on the list very carefully to ensure they have the best chances of surviving with a new heart and using it to its fullest.
The CT scan, for example, is done to make sure there isn’t any damage to the brain that isn’t otherwise seen in her so far, that would not allow her to be fully functioning on the long term. There is no way to know this for sure, but a CT scan can rule out many things.
Her need to be healthy enough for a transplant is one of the reasons they are prompting us to list Annabelle now. If she gets so sick that they are unsure if she would survive a heart transplant, that would make her ineligible for a heart.
And if we go through another surgery and she does not do well, she could either 1.) get too sick or 2.) have a much shorter period of time she could survive without a new heart, meaning she might die before one is available.
Questions We’ve Been Asked (to save me time from answering them individually):
How long does it take to get a heart? The answer is, obviously, it depends. They say on average 6 to 8 weeks, but it could be a few days after getting on the list, or it could be 6 months.
Can Annabelle go home and wait for a heart? This is a hard thing for Scott and I. If we pushed to be able to bring Annabelle home, this would 1.) make her vitually ineligible for a heart, because it puts her at the end of the list as she is well enough to BE home and 2.) be very risky because if something happened at home with her breathing or heart, this could turn into a life-threatening emergency much faster there than it would if we were already in the hospital.
The other note is that her heart isn’t functioning the greatest right now, although she is stable, but there is a medicine they can put her on that will help the function. However, we must go back down to the ICU in order to get it, as it is only given through her IV and requires a lot of monitoring.
But being in the ICU also puts us higher on the list as well, so we aren’t sure that that is a bad thing. Although it is SO much nicer to be upstairs! In the end though, we want what is best for Annabelle, and will defer to them.
Who decides who gets a heart? A computer. And thank goodness for that! Could you imagine having to be the one who sifts through files of sick kids and decides who gets to live and who might not? How horrible! No, they have a computer that has criteria programmed into it. There are 4 different “levels” on the transplant list. 1a is most critical (in the ICU), 1b is next critical (In the hospital but not in ICU), 2 is not critical (home) and 7 is inactive (holds your spot but you don’t need one right now.) This is REALLY an over generalization and there are a lot more criteria that determines the level, but it is a summary anyway. Then it goes by how long you’ve been on the transplant list.
Where does the heart come from? Physically, it comes from a child who has a compatible blood type and is comparable in size (the same size to 2x the weight of the receiving child.) As far as location, the US is set up in regions, so the heart would be from somewhere in our region.
–end of heart transplant lesson–
Sorry if this was a little long and detailed, but to be honest, it helped to type some of the info out just to solidify what was in my head!
I think one of the hardest things for me to accept, and the thing I’ve tried to think about the least in this process, is that another child has to die in order for mine to live. It feels cruel, but I also remind myself this: As a mother, if something ever happened to one of my children, I would donate their organs in a heartbeat, and I would never want the receiving mother to feel guilty. Also, that baby isn’t dying BECAUSE my baby needs a heart. That baby went to be with Jesus regardless. My child will just have a longer life because of the thoughtfulness and loving heart of grieving parents.
That doesn’t make it easier. But makes me okay about accepting this new reality.
Scott and I went on a “date” today. We went out to dinner, saw a movie, got Scott’s hair cut, and went to Target. Our shopping trip was a slightly sad one though.
In a way, we are in mourning. We are mourning the loss of our baby coming home right now. Everywhere we went, there were reminders. I remembered the warm fuzzy snowsuit I’d bought her that is at home, and she probably won’t need. We have her infant carseat that she very well might be too big to be in by the time we leave. I have her “first church” dress hanging in my closet at home that she probably won’t fit into by the time I get to take her to church. Over the last month, I finally let myself buy her a good bit of clothes in preparation for her coming home, and many of them are impractical for the hospital while she is hooked up to so much stuff, and will be too small (and too hot) once she does come home.
There are so many things… but as we were leaving Target, Scott and I were talking about it, and decided that we should be pretty thankful. How much worse would it be to be walking through the store, seeing all the baby items, and not having our baby with us at all. While we mourn this stage we are losing at “home” with our baby, we celebrate her life that she is still living, and the hope of a much better life with a brand spanking new heart. The things we mourn are just that: Things.
Life, every blessed day we are gifted, is much more important.
You may be assuming by now that we have made a decision to go ahead with the transplant. That is kinda correct. We are leaning toward that and shifting our mindset. However we have sent all her medical records to 3 different doctors at three of the top hospitals for Children’s cardiac care for second opinions. We are deferring a final decision until we have reviewed their recommendations.
But for now, we are going through the motions “just in case” so if we DO decide to move forward, we are ready and don’t have to wait on more paperwork.
As far as Annabelle today, overall she had a great day. NO FEVER!!! We are SO very pleased about that! She did have some issues with desatting and fussiness this afternoon, but we think her stomach may not like her new formula they put her on a few weeks ago, because when we stopped feeds… she got better! We’ll be discussing with doctor’s tomorrow.
Please know that we covet and appreciate each one of your prayers. They’ve meant SO much to Scott and I during this time.
My sleeping beauty! Her shirt with the little princess frog says, “Pucker Up!”