Learning in Her Name - how losing Ivy turned my search for answers into a lifelong commitment to helping other families.
Learning in Her Name - how losing Ivy turned my search for answers into a lifelong commitment to helping other families.
7.28.2026
21 - a personal blog
There are nights when my house is quiet, and instead of watching television or scrolling through social media, I find myself reading medical journals. I read about congenital heart disease, ECMO, blood clotting disorders, hospital policies, family-centred care, and the latest research on children born with hearts like Ivy’s. Some studies are decades old; others have only just been published. I’ll spend hours reading articles that no longer have the power to change my daughter’s story, yet I keep reading anyway.
People often wonder why.
The answer is simple:
The studying never stopped.
When Ivy was born, I became more than her mother. I became her advocate, her researcher, her record keeper, and the person who always had another question. Every day brought new lab results, new consults, new medications, and new decisions. I learned to understand echocardiograms, blood gases, clotting studies, ventilator settings, and medical terminology I never imagined would become part of my daily life. Although I was already a NICU nurse, becoming Ivy’s mom taught me medicine in a way no textbook or career ever could.
When your child is critically ill, learning becomes another way of loving them.
After Ivy died, I thought that part of me would eventually fade. I believed there would come a day when I’d close the laptop, file away the medical records, stop requesting journal articles, and finally stop searching for answers. But that day never came. I still read.
Not because I believe one more article will explain everything. Not because I think I’ll find the one sentence that changes the ending. I know there is no study that will bring Ivy back into my arms. No statistic will let me hear her laugh again. No research paper can rewrite our story.
The studying isn’t about changing the past. It’s about honouring the little girl who changed my life forever.
Some people collect memories.
I collect knowledge.
Every article teaches me something new. Every clinical guideline reminds me that medicine continues to evolve. Every quality improvement project makes me wonder how many children will have better outcomes because someone cared enough to ask,
“How can we do better?” That question has become part of Ivy’s legacy.
I don’t just read about congenital heart disease anymore. I read about hospital systems, family-centred care, patient advocacy, rare complications, ethics, communication, and the policies that shape the care children receive.
I think about the parents behind every statistic and every research paper.
Behind every percentage is a child.
Behind every publication is a family who lived through the unimaginable.
Those children are more than data, and those parents are more than participants in a study. They are mothers and fathers who loved their children as deeply as I love Ivy. Being both a nurse and a bereaved mother has forever changed the way I see healthcare. I know what it feels like to stand at the bedside. But I also know what it feels like to sit beside it, waiting for answers that may never come. I know the weight of every phone call, every family meeting, every difficult conversation, and every moment spent watching monitors instead of holding your baby. Those experiences changed me in ways I never expected. I’ve realised that my search for understanding isn’t really about finding every answer. It’s about making sure Ivy’s life continues to matter.
If something I learn helps another parent ask an important question, encourages a healthcare provider to explain something more clearly, or inspires a hospital to improve the way it cares for families, then Ivy is still making a difference.
That’s why I’ll keep reading.
I’ll keep learning.
I’ll keep asking questions.
And I’ll keep sharing what I discover.
Because somewhere, another family is beginning a journey they never wanted. If my words can help them feel a little less alone, a little more prepared, or a little more empowered to advocate for their child, then every late night spent studying has been worth it.
People sometimes ask me if I’ll ever stop searching.
The truth is, I don’t think I will.
Not because I’m trying to change what happened. But because learning has become one of the ways I continue loving my daughter.
The studying never stopped because my love for Ivy never stopped. As long as there is something new to learn that might help another child, another parent, or another healthcare provider care a little better, I’ll keep turning the page.
Because this is how I carry her forward.
