Life with 3 girls and 2 on the way was crazy and exciting! The girls were overjoyed that they were going to have 2 sisters (although they really wanted at least one brother 😉) Jimmie and I were nervous about managing 2 newborns with 3 older girls, but we were ready to tackle it!
I had a pretty healthy pregnancy and made it to my scheduled C-section date with them! Avery first and Brynn second, but Brynn was the bigger of the 2 and was almost a pound heavier!
My oldest daughter, Sylas, was diagnosed with Cardiomyopathy at 5 months so we made the decision to have each girl thereafter screened for it. Brynn had an echo at birth before we left the hospital and was diagnosed then. I remember feeling in shock and so helpless that I couldn’t take it away from her. But I was also hopeful that she would remain stable with the disease just as her older sister did.
When we were told that Brynn would need a heart transplant, we had SO many emotions. Every day on the transplant waiting list brought new challenges. Brynn was on an assist device to help support her failing heart, so we were unable to leave the hospital. Her device only allowed her to be unplugged for 30 minutes at a time and would take 4 hours to charge. We had to strategically plan her time to get out of the room and we were limited to 2 times a day. Brynn was only able to go outside twice while she was on her assist device (February-June). We (with the help from my sister and dad) were able to stay with Brynn in the hospital and frequently visit the other girls at home.
Of course, I mourned the time that she was missing and not able to do normal toddler activities. Not only was Brynn missing out, but Jimmie and I were unable to be with her sisters and we missed out on a lot of their lives that year too.
I was terrified that something would happen that would prevent Brynn from getting to transplant. There are a lot of risks with her assist device (stroke and infection being the main complications).
I still get teary-eyed thinking about the morning we got “the call”. I was at The Ronald McDonald House with the older girls while Jimmie was with Brynn. He called me at 8:30 that morning and I instantly thought something was wrong. I answered the phone and said, “Is everything okay?!”. I could tell something was different… there was a sense of relief in Jimmie’s voice when he said, “Yeah…Brynn got a heart!”. I instantly burst into tears knowing that our lives were about to be forever changed. It was a light at the end of the tunnel that had been pretty dark up until that moment.
When I saw Brynn for the first-time post-transplant it hit me hard that someone was mourning the loss of their precious child. There was a time I thought we would have to make that decision for Brynn and being on the other side of it; there are no words. I am so grateful for the decision that her donor’s family made. Although we don’t know much about her donor, I have such a deep love for them and their family. We have an indescribable connection that lives on through Brynn.
Our lives after transplant have changed so much. Seeing Brynn grow and be with her sisters again is such a great feeling. I couldn’t be more grateful to everyone that cared and advocated for her because, without them, she wouldn’t be where she is today.
We don’t have much of a life now even after transplant. We try to take every precaution we can to protect her and our family. Being in the middle of a pandemic is hard, but when one of your
children receives a transplant, it becomes even harder. The thing we enjoy the most is just being home together, under one roof, as a family.
If I were face to face with Brynn’s donor today, all I could say is “Thank you”; even then I know that’s not enough. I want them to know that in their darkest time they made a selfless decision to save me from mine. I would tell them that I am and will continue to celebrate their baby’s life through Brynn. I want them to know that in those moments after their child’s death I wanted to be there with them to hug them and support them. I would tell them that their child did not die in vain and that I pray that they know I will do whatever I can to make sure their baby’s heart is taken care of and that their death has touched so many lives.
3 out of the 5 of our girls have been diagnosed with cardiomyopathy (Sylas, Avery, and Brynn). We pray that the medications will keep our babies safe and healthy, so we don’t have to walk this path again. We are so grateful to our donor family who gave us the opportunity to live our lives together, as a family. Our home would be a much different place without their selfless gift.
Please consider joining the confidential online registry. You could save a life like Brynn’s and a family like ours.