I will preface this post with these statements - this part of Joy's life is one of the few parts that I would change if I could (I mean besides the obvious fact of her living longer). I am glad that we were able to donate her organs, but there are parts of this story that did NOT go the way I had planned. I am coming to terms with that, but just thought I'd say that at the outset.
One of our big desires for Joy was that she be able to donate her organs. Organ donation is very important in our family - my uncle has received two kidney transplants, one of which was donated my aunt (his wife). Of course we didn't choose to carry Joy just so that she could donate her organs, but I did want every bit of her life to be filled with purpose. What better way than a physical part of her continuing to live on in someone else?
When we had our initial meeting with the neonatologist and palliative care specialist, they weren't aware of any opportunities for organ donation. I pressed the issue a little (politely of course) and they agreed to look into it for us. I knew that the regulations varied state by state, but that there should be *something* we could donate. Eventually, they put me in touch with the Donor Liaison at CORE (Center for Organ Recovery and Education), the local organization that handles such things. Our Liaison, whom I will call Alice, was wonderful. She had done research and had a couple of options to present to us. It was a little confusing because the requirements for babies are constantly changing depending on supply and demand. There was a possibility that she would be able to donate her heart valves if she was big enough. I didn't hold out much hope there because Liam had barely met the size requirement at full term with a fully developed head.
Alice also told us about a new program through a research company called Cytonet (which apparently has been recently acquired by Promethera) that was extracting liver cells from donated organs and transplanting them in livers of children who were ill with a particular kidney disease to boost their liver's health until a liver transplant match could be made. The cells from one baby can be placed in up to three babies! Or such is my extremely unscientific understanding of it. The only requirement of that donation was that Joy be born alive. Of course, to donate the liver cells, the liver had to be "harvested" (a word I really don't like) within two hours of her passing. This would limit the time we had with her, but after thinking and praying about it, we decided this was the right decision. No amount of time with her would be "enough" but we thought that two hours would be plenty for us to hold her and have our families meet her. And of course she could come back to us after her surgery. We let Alice know of our decision, also knowing that we could change our minds at any time.
Although Joy didn't live long, the fact that she was born with a beating heart was enough to qualify her for the liver cell donation. I've already written about the time we spent with her after birth and her being transported to the surgery, so I'll just put an excerpt here:
"As 1:00 AM neared, our families said goodbye to us, and more importantly, to Joy. It was the last time they would see her this side of heaven. We spent a few moments with her alone, and then handed her off to our Nurse Joan* and the Organ Transplant Coordinator Alice* who carried her back to the operating room. I don't remember exactly how long she was gone - maybe an hour or two? We tried our best to nap then, but it was hard to fall asleep.
After her surgery, Alice carried her back to us. It's a small detail, but I really appreciated the fact that they carried her in their arms to and from us, like the precious bundle she was, instead of wheeling her around in a bassinet or gurney. It made me feel like they really cared for her as a person, not just an unfortunate incident or a source of donated tissue. Anyway, they had bathed her and dressed her in the little white preemie outfit I had purchased for her and wrapped her up in her blanket. They had told us that part of the procedure involved cooling her body down rapidly to preserve the tissue (I think - I'm a little fuzzy on the details). All I know is that when she was handed back to us, she was very cold and stiff and her skin was very dark. Honestly, it was horrible. Right after she was born and passed, though her face was dark, the rest of her skin was soft and healthy looking and she seemed like a peacefully sleeping baby. After her surgery, she just seemed cold and dead. Which of course she was, but now her appearance matched the reality and it was hard to deal with."
So the donation itself was hard for me, but we anxiously awaited news of the recipients of Joy's cells. We got good news fairly quickly that they were able to harvest a good amount of cells and that they would be put in storage until a match could be found. After a few months, we followed up with Alice, and got this news: "the serologies (blood tests for different viruses) for her cells came back Cmv positive (not really all that uncommon), because of that they would typically infuse those cells into a baby who was already CMV positive (they could not go into a CMV negative baby because the babies are immunosuppressed and the virus would harm them). They did not have a CMV positive infant to infuse with the cells, so instead of not using the cells at all, they have used them to research the best way to infuse children with this type of cell therapy to increase their rate of survival. Even though the cells did not go directly into another little one, Joy’s donation has be critical in improving the cell therapy process so that many, many more babies can benefit."
Honestly, this news was hard for me to take. Intellectually I know that this is an important part of research, but I wanted to have a face and a name (or two or three) to say "those babies are the ones my daughter helped." Obviously there's nothing I can do about it except pray that many more babies will eventually benefit because of Joy’s donation.
Our organ donation story did not stop there - as I posted about before, we were also featured as *the* case in a case study about neonatal organ donation. You can read more about that here.
If you happen to be reading this and are in a similar position and are considering neonatal donation, I have a great resource for you. An acquaintance of mine whom I met through an online anencephaly support group has a passion for education parents and the medical community about this very topic. She lost her son to anencephaly shortly after Joy was born and actually donated his whole body to research! She has an amazing website called Purposeful Gift if you are interested in reading more.
The spring after Joy's birth, we were invited to CORE's annual ceremony to recognize and thank donor families. We were excited to be included and looked forward to the event. Most of the event was lovely. I forget the details now, but know there were several speakers (both donor and recipient families) and a big balloon release. Afterwards, we were invited inside to eat lunch while we watched a slide show remembering each of the year's donors. Each donor family had submitted a picture and some brief information (a 15-20 word description, if I remember correctly) about their loved one and it was made into a slide show. They were in alphabetical order by last name, but only first names were shown on the screen. So were never sure where we were in the alphabet, but I kept my eyes glued to the screen for 20 minutes waiting for the S's to arrive to see my baby girl. All of a sudden, the music stopped and the show was over. And no Joy. I could barely look up to meet my family's questioning eyes. When I did, I just burst into tears. We happened to find Alice, who found one of the organizers, to figure out what happened. No one was really sure. They knew her picture and slide had been included in an earlier draft because several people remember seeing the picture of her little feet. But somehow it did not make it to the final presentation. It was an honest mistake and they did apologize, but it really upset me. I liken it to your child's name being skipped at high school graduation. Except in that case he would be there to jump up and down and say "hey! you forgot me!". I was so excited for Joy's one moment in the sun, and it didn't happen. Apparently it still upsets me as I'm tearing up as I'm typing this. We did eventually get a DVD of the revised presentation, so I snapped a picture of her slide to give Joy her public-ish recognition now.
One last thing that was a lovely part of the event was that each family was invited to make a quilt square to honor their loved one. This square is sewn into a quilt that travels around on display to promote organ donation awareness. On my own, I'm sure the square would have been quite sad, but thankfully my mom and aunt are amazing seamstresses. They used my aunt's sewing machine to embroider an actual (enlarged) copy of Joy's footprints onto our square. And being the thoughtful ladies they are, they made a copy for and framed it. Here is her square, and then her square sewn into the quilt. Thankfully the square didn't get lost in the shuffle (oooh...does that sound bitter? haha!)
So that is our woeful tale of organ donation. Although it didn't go quite as I imagined, I am glad that we made the decisions that we did and gave our sweet girl the opportunity to be an organ donor!
