You know those clubs you always hear about that you don’t want to join? Well, I am in one. I am in the BA mom’s club – and it’s not the one you are thinking of. Three years ago, I never thought we would be here today, but I am so thankful we are and that I get to tell you my story.
Three and a half years ago, I first heard the words Biliary Atresia (BA). I was quickly “initiated” into our group and learned Biliary Atresia is a rare liver disease that affects 1 in every 15,000 children born. The bile ducts are not formed correctly or are narrowed at birth. Some common symptoms are pale stools, dark urine, extreme fussiness, poor weight gain and jaundice.
My son has been through a lot, more than I ever will, and he did it all with the brightest smile on his face. He had his first surgery when he was one month old where a doctor connected his intestines directly to his liver to drain the bile that was being trapped. He was evaluated for transplant shortly after that and officially placed on the UNOS waiting list in May of 2015.
We got the first call that a liver was available to him on June 24, 2015. It’s hard to explain the mindset of a liver mom who is waiting for her child to get a transplant. I struggled for a long time because I knew that my son was small so a liver would probably have to come from a small human. It tore me up inside because I felt like I would benefit from another mother’s pain. It felt wrong to wish and hope for life for my son when someone else’s would have to end at his expense. I was told to think of it this way:
“The death will happen either way, no matter what. We have to pray for a family to have the strength to say YES to organ donation.”
Those words really stuck with me and allowed me to have hope again.
I won’t go into all the details and I will spare you from reading a bunch of long medical terms, but my son had 2 more liver transplants during that same summer. He was paralyzed and sedated during that time and we didn’t get to hold him until after August 2015. It was the longest summer in the history of my summers.
I am a liver mom because I have sat in a hospital all day, I have handed over my son to an anesthesiologist more times than I can remember, I have woken up every 4 hours for vital signs, and I have gone without eating because I was so sick to my stomach that I couldn’t imagine lifting the fork. Nurses became family because they wiped my tears and held me up when I lost every ounce of hope that I had in my body. I’ve been the mom on my knees in the shower silently sobbing and begging for some miracle to come. I know more about the liver than I care to know. I know lab values, which vein is the “good vein,” and random statistics about transplant centers across the U.S. I have watched babies receive their life saving gift, but I have also watched others pass away while waiting for their offer to come.
I am a thankful liver mom because three separate families said yes to organ donation. Three moms on their darkest days somehow became my light at the end of a very long tunnel. Three moms found the strength the say yes and give my son hope when I had none left – hope for the chance at life, hope for us to make memories, and hope to walk out of that hospital. Three moms will never get to hold their baby, take a first day of school picture, or dance in the kitchen again, but somehow, I get to. There is not a day that goes by that I don’t think of our heroes.
Being a thankful liver transplant mom means that I get to see a walking miracle every day. I get to spread awareness about the good things that can come from organ donation. I get to help others in their time of need and show them the ropes of life after transplant. I get to watch him compete in the Transplant Games – something I never would have thought was possible three years ago. I know that I will always be a mom – I might have a few more adjectives in my title, and I might be in a club I had no desire to join at first, but now I am perfectly OK with that.
If you would like more information or to register to be an organ, eye and tissue donor, please visit the website HERE. There will also be a 5K on October 6th called the Rabalais Run for Life that helps raise money for education on tissue, eye, and organ donation. Find more info HERE.
About Brittany Elliser
Brittany Elliser is native to Baton Rouge. She graduated from Southeastern Louisiana University with a bachelors in Accounting and International Business. It was at college that she met her future husband, Bryan. They decided to move back to Baton Rouge after graduation, built a house in Central, LA, but currently resides in Mid-City. She has two boys that are her whole world and doesn’t mind being the queen of the family one bit. She is a CPA at KPMG and when she isn’t working loves to be involved in the community. She is a board member of the Louisiana Organ Procurement Agency, a National Instructor for KPMG, owns a baby boutique, co-runs book blog, and is an active volunteer spreading education and awareness for organ donation.