The Waiting List

We get a lot of questions about the waiting list for a heart transplant – how long Mallory will wait, what number she is on the list, etc.

The unfortunate answer is we do not know.  But, I can help explain how it does work which may help.

UNOS (United Network for Organ Sharing) is the agency that hold the waiting list and oversees the transplant process for all organs.  For a heart specifically, there are 4 different statuses – 1A, 1B, 2 and  7.

1A:  Most of the time these kids are hospitalized waiting for their transplant.  They are on a ventilator or request certain IV medications to live.  Many are also on ECMO or some sort of device such as the Berlin Heart – for those of you who followed Mallory when she was an infant know she was originally listed as a 1A because of all of these factors.

1B:  These kids most likely are not in the hospital.  They maybe on IV medications at home (Mallory is not FYI) or the are what is referred to as “Failure to Thrive” meaning not growing as they should.  This is the reason Mallory is listed and qualifies as a 1B status.

2:  Any child that needs a transplant, but does not meet the criteria above.

7:  This is an inactive status could be because the child is too sick or too well to accept the heart.

When a heart becomes available, there are many things that come into play in addition to the status level:

Location – the donor heart must be within 4-6 hours of CHOA.  This is also why during this time, we cannot travel any more than 4 hours from CHOA so that we can also guarantee we could have Mallory to the hospital within the window.  If we HAD to travel, we would have to change her status to inactive.

 
Blood Type – Mallory is B positive, so she can accept a heart from either a B or a O donor.  One cool thing I read about infants (which again applied previously when Mallory was listed) is some can receive ANY blood types because their immune systems are not yet fully mature.

Size – Mallory can accept a heart from a donor that is between 18-30 pounds.

Time – The amount of time a child is on the waiting list also is a factor.  If a heart came available and Mallory was a perfect match as well as a child that had been listed for 6 months – it would first be offered to the other child.

There is a very complex matching process that provides UNOS with a list of potential matches when a heart becomes available.  Each transplant center is notified when one of their children are at the top of that list.  The transplant team would then decide if they felt that the heart was perfect enough for Mallory (and yes quite often hearts are denied by the team for many different reasons).  If and ONLY IF they agreed that the heart was good for Mallory would they call us.

So, long story short, we do not know how long we will wait.  I do know that many in our area children are waiting upwards of a year at a status 1B and that a couple years ago status 1A children at CHOA were only waiting 1-2 months and now many are waiting 4 months+.  There is a lot of data on the UNOS site – I do know that in our region, Mallory is the only child on the list (1A OR 1B in her age group 1-5yrs) that is a B blood type – all of the others are O.  I also know from that site that there are 6 – 1A in her age group and 4 - 1B.  Of the 1A, 2 have been waiting 1 – 3 months  and 4 have been waiting 3-6 months.  For 1B, 2 have been waiting less than 1 month (1 of those is Mallory J), 1 have been waiting 6 months – 1 year and the other 1-2 years.

What does this tell us – Absolutely NOTHING…  It is hard (especially for me) to not get tied up in the numbers.  What I focus on is there is a perfect heart for Mallory and she will get her gift when the time is right.  In the meantime, we focus on staying healthy enough to be at home, staying positive, praying and trying to keep as much normalcy as we can.

Thank you all so much for the support.  Once again I am amazed at the people in our lives and those that hardly know us.  It is humbling how much love people have for Mallory and our family.  So many have been asking what they can do.  Right now we are coping well but there will be a time when we will need support and we will let everyone know when that is.

Also – I know so many people have questions about this whole process and Mallory.  Please ask questions!  And when there are a lot of the same – it gives me good ideas for future blogs!

Love you all so much and God Bless,

Jess