October is Pregnancy & Infant Loss Awareness month.  Unfortunately, many of our heart families walk this impossible road.  Help-A-Heart wanted to share the story of one of our heart angel families this month to help raise awareness.  Thank you to Nate & Emily Forsythe for writing & sharing the story of their precious daughter, Kennedy Ren Forsythe.  Nate & Emily are the proud parents of Kennedy & Oliver (age 1).  This is Part 8 of 11.

Transplant

Ugh.  The Hope rollercoaster again.  Let’s talk about transplant day.

I was always optimistic about Kennedy and how she was doing.  I mean, you have to be, otherwise hospital life will eat you alive.  But this day was perhaps the turning point where I began to vocalize that maybe things were not going to be okay.  It was a dark day.

I sat next to her on a chair stroking her arm.  A PICU doctor enters the room – “Dr A wants to see you, he’s on the transplant team.”  TRANSPLANT!  That’s good news, right?  Maybe they listed her.  But would they do that without talking to us?  I guess maybe so.

Dr. A was sitting in a conference room behind a door that magically appeared in the PICU.  I’d never noticed it, anyway.  “Is your husband here?”  Ugh, another one of these guys.  No, I explained that he was sick and we’d agreed that for the safety of K and the other kids in the PICU, he would skip today.  He begins to tell me all about the transplant process, how they decide to list, what the process would be like – we would be questioned, yada yada yada.

He talked transplant shop for another 15 minutes.  It’s easier to find hearts for infants because the blood type doesn’t have to match (Tragically, good news?) I was waiting for him to tell me she was listed.

Then he said it.  “She doesn’t qualify.”  Actually, he called her “the patient.”  The moment of Mom Rage passed more slowly than it should have.  “…because of ECMO.”  I’d missed something he had said, so I requested he repeat.

The next 20 minutes were spent with a nurse in the conference room.  Dr. A had left the room.  Comforting sobbing mothers wasn’t part of his job description, perhaps.  I’m being unfair, but I didn’t like his approach.

ECMO, the only thing keeping her alive, was causing a small brain bleed (as it typically does).  This keeps her off the transplant list.  The very thing keeping her alive, is ultimately killing her.  Our best hope is to get her off of ECMO.

Tomorrow we game plan and I leave the hospital in tears.