10 years ago we entered C.S. Mott Children's Hospital scared out of our minds. We were preparing to hand our daughter over to the staff to perform what we prayed would be life saving open heart surgery. She was just over 7lbs and a little over 3 months old.
We had been assured months prior by another hospital that Mylah’s life wasn’t worth the repair because of her Trisomy 18 diagnosis. We were told she most likely wouldn’t make it to birth, and if she did her life would be short -not even a year. We were assured that she wouldn’t ever know us or smile. I’ll never forget the pain that statement brought.
When Mylah was born alive and the minutes of her life turned to hours, then days, then weeks, Kim, her palliative care nurse said it’s time to find a place that would be willing to evaluate her for surgery. We needed to move on in our fight.
We were guided to Mott. There, we attended many appointments and evaluations. We were given the good, bad, and ugly of a surgery this serious and the Trisomy 18 diagnosis created an opportunity for more possible complications.
I remember making the decision to go with the PAB procedure, thinking it would allow Mylah more time to grow and then opt for the full repair later on.
Dr. Ohye her surgeon walked in and gave us a truthful recommendation-the full repair. I recall when he said “Let her write her own story”.
That surgery and the months after were life changing, literally.
Mylah recovered and we adjusted to our new normal.
She sees cardiology every other year now. She’s growing and thriving.
But most of all….She’s Smiling.
Every. Single. Day.
Children with Trisomy 18 endure so much. There are many children and adults living with this diagnosis. Every day we are learning more and more about their abilities. Given the chance, they are able to live lives longer than what some are being told. They just need a fair chance. Some people feel a certain way about children with special needs-especially those diagnosed with conditions prior to being born.
I’m here to tell you that the love, joy, & hope they bring to the lives of their families, OUR LIVES is priceless. The lessons they teach us happen every day. There is something to reflect on after every trial and every triumph.
I’m extremely happy for Mylahs 10th Day! I honestly didn’t dream this far ahead, I was living in the moment and being grateful for the time we’d been given.
I’m still thankful for the time but what Mylah has taught me is that it’s okay to dream ahead. She’s a fighter and as long as we are by each others side I’ll be fighting for more love, more memories, and most of all more smiles.
Happy ❤️ Day Mylah! I love you immensely and am SO grateful that God has brought us this far!!! Thank you for being my teacher and my Hero.
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