If we could describe our journey with Layla, who is now 8 years old, in just 3 words we would say fearful, hopeful and inspirational.
The fear started out of our 20-week ultrasound. We were told it’s a girl!! Followed by words that changed our lives. We were told she has hypoplastic left heart syndrome, unbalanced av canal pulmonary stenosis and heterotaxy syndrome. She was going to have to fight for her life, a fight you wouldn’t want any child to have to endure.
A few days before Layla was born our fear started to turn into hope. Hope that our baby girl was going to make it, hope that I as her mother was strong enough, hope for my husband and other children to be able to handle this new journey we were going to call life with Layla. Before we knew it Layla was born, then at 5 days old she had to undergo her first open-heart surgery. It was the 1st of 3 that she handled like a boss. A few weeks later we were able to go home.
The first year of Layla’s life was the toughest thing to go through not only for ourselves between losing jobs balancing life and hospital but for her. She went and had multiple procedures and surgeries … the unknowns and what ifs. Layla always found a way to keep a smile on her face. Layla’s last open-heart surgery had to come sooner than we expected. She was about 3 years old. It’s called the fontan.
After that she had a couple of good years living her best life trying her best to keep up with other children the best she could. Last year Layla became really sick and developed PLE. It was a major indicator for the doctors that her fontan was failing and she is now in heart failure. This diagnosis did not stop and does not stop Layla’s will or ambition to live her life to the fullest. With this new development with her we had to make a choice to place Layla on the transplant list for a new heart. We struggled for a little bit until one night we asked Layla if she had a chance to receive a new heart, what her thoughts would be. She replies I’m ready, I want to know what it feels like to breathe. After that we knew what we had to do.
So now our fear and hope work alongside inspiration. The inspiration we get every time we walk through the hospital doors. The inspiration that fills our hearts every time we look into Layla’s eyes and the inspiration that we will get a chance to witness the gift of life. A life Layla deserves, long and fulfilling. Even with a new heart Layla will still continuously keep that fight she has to continue lifelong medication, hospital visits, time away from family.
With our fear, hope and inspiration as a family, she will make it through. I hope anyone reading this finds time to join our journey whether it be a donation to COTA in her honor or thought and prayer. My family will forever be grateful… Until next update, love – the Adkins family
The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.
The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.