By Jessica Ma’ilo
Mommy to Jewels
Congenital Heart Defect – HLHS/DORV
August 2024 – July 2025
On a quiet Sunday in September, while packing my family for a weekend at Disneyland, I received a phone call from DHS. My middle children are adopted, so I assumed I was getting in trouble for being late with their annual paperwork.
Instead, it was a phone call that changed my life.
The kids had a brand-new baby sister who had been born with a congenital heart defect, and she needed a home. I pretended to think it over, but I knew from the moment they said she was here that she was ours.
There, in the middle of suitcases and Mickey ears, I chose to become a heart mom.
Things were still in motion with DHS and the hospital, but I met Jewels the next day and immediately fell in love.
From the very beginning, I believed she would surprise us all. She had already survived a difficult pregnancy, undergone early surgery, and somehow found her way to us. The hospitals, the foster system, and even her own body placed obstacle after obstacle in our path, but we overcame every one of them. When she was finally listed for a heart transplant, I had already started planning the celebration vacation we would take after a successful transplant.
I knew the road ahead wouldn’t be easy, but I pictured yearly family portraits, watching her tag along with her older siblings, growing up alongside her cousins, and being absolutely spoiled because of everything she had already overcome.
Most of all, I believed she would be our miracle. Our fighter. Our precious Jewels who beat the odds.
Jewels spent her first two months at Oklahoma Children’s Hospital before finally coming home. We were blessed with three glorious months together—Halloween through New Year’s. Those were the fun months. She lived so much life during that short time, and I will forever be grateful for every moment.
She was readmitted to the hospital in January on her five-month birthday. When our local team ran out of hope, I sought second opinions across the country, and we eventually transferred to Dallas. They gave us everything our previous hospital couldn’t—or wouldn’t. They gave us hope.
In late June, she went into surgery to repair a leaking heart valve. I had wanted the team to address it sooner, but there hadn’t been agreement on the timing. Once everyone agreed, she was in the operating room within days.
She recovered about as expected, but she never bounced back the way she had after previous procedures. Her lungs were struggling, and her kidneys began to fail. The medical team that had once been full of hope slowly ran out of optimism.
After fighting to transfer hospitals, fighting to get her approved for a ventricular assist device (VAD), and fighting to get her listed for transplant, we were told she was no longer a candidate. The decision was made that her VAD would be “compassionately deactivated.”
It felt anything but compassionate for those of us who loved her.
I lay beside my beautiful, precious girl as she took her final breaths, no longer supported by machines, and left this world.
Our entire family wrapped ourselves around her. I left my teaching career to spend the last seven months of her life by her bedside. Even after I was no longer legally connected to her as her foster mother when we transferred to Texas, we moved our entire family to Dallas because she had no one else.
We were her family. We were her people.
We changed our lives for her, and I would do it again a million times over.
A friend recommended On Angels’ Wings during the fall of 2024 after her own child had received a session. Emily was our photographer, and she was kind, flexible, and creative. I was so excited to begin the journey sessions. Although my excitement proved to be premature, I will forever be grateful for the beautiful memories she captured for us during Jewels’ first — and only — Christmas season.
I am utterly shattered from losing her.
Jewels was the purest soul I have ever known. Despite everything she endured, she was a light. Her smile felt like a gift, and she had the kind of beautiful spirit that made you feel like you’d been in the presence of angels. She was equal parts sassy, joyful, and full of love.
I miss her more than words could ever hope to express.
The photos from our On Angels’ Wings session preserve a hopeful season—a time before we knew the depth of the pain that was still to come. They allow me to look back on her beautiful, far-too-short life and remember every detail.
As I continue learning to live without her, I find myself forgetting the little things that only photographs can bring back.
That is the most priceless gift of all.
