Lydia Neal – QOH StoryThere are moments in life that are forever etched in our mind. Each detail is forever embedded in the cortex of our brain, never to be forgotten— “I have to tell you there’s a heart defect and I’m nearly certain your daughter has Down Syndrome”, is one of mine.


It’s hard to describe, but I knew that Lydia was a special gift long before that day in the ultrasound room. Maybe it was Mother’s intuition or some kind of divine wisdom, I’m still not sure. That day confirmed what I’d known in my soul for months— my daughter would be born a fighter and I would be with her every step of the way. I was terrified of the uncertain future, but she would make me brave.


The day that Lydia was born (June 11, 2018) was filled with excitement and fear— honestly, mostly fear.


She smiled and turned her head to the sound of her daddy’s voice, just moments after being born. Seeing her smile and gazing into her eyes, my heart and mind relaxed— her smile seemed to whisper to me that she was going to be okay. I secretly hoped that maybe a team of experts had been wrong about her broken heart. Hours later, her team confirmed that their fetal diagnosis of her CHD was accurate— our fight against her Atrioventricular Septal Defect was on.


Her first few months are still a blur…. We saw our beloved cardiologist Dr. Tatum, every two weeks. There were hospital admissions, constant struggles to get her to eat and an eventual ng tube, and ‘round the clock medications. We were living in a constant state of exhaustion— all while trying to enjoy the days that we had with her, knowing they may be all we had. I knew that I was watching her slowly die before my eyes— every day she seemed to weaken, with every breath she retracted, her color worsened, and she continued to fail to thrive.


Heart surgery was her only hope of surviving.


We finally made it to her surgery day— I cried when I saw her after her repair. However, my tears were not tears of despair— they were joyful. I had never seen her breathe without retractions before that moment and her skin was beautiful and pink!


That night Lydia experienced a pulmonary hypertensive crisis. We later sat with Dr. Anderson (one of her heart surgeons) who told us her body was struggling to adjust to the massive heart repair she had undergone.


Once she came home from her heart surgery, she was able to really begin to grow, live, and thrive— it was as though her life didn’t truly begin until her heart was repaired.


CHD will always be a part of our lives. Lydia may need another surgery as her body grows. For now, her repaired heart is growing with her and she is thriving— and that is enough. Every day reminds me that life is a gift. Nothing is ever guaranteed. Each beat of my daughter’s heart is a gift- I will not waste a single one.


Lydia’s personality and presence in our family is irreplaceable! She loves to play outside and finds joy in whatever surroundings she finds herself in. She enjoys playing kitchen, making pretend cookies, and listening to cocomelon songs. She has a gift of reading other’s emotions that is difficult to describe with words— often giving others hugs or “love pats” when she senses they’re having a hard time. They’ll tell me later that the hug was exactly what they needed and don’t know how she was able to tell they were sad.


I’m not sure what we did to deserve the gift of Lydia and her special heart. The disability world is filled with a beauty that I am privileged to be a part of— all because of Lydia.


Life is better with Lydia.