Layla’s fight with Biliary Atresia

Layla has labs today. Hoping for good results 💕

I can put my anxieties to rest until the next round of tests 🫠

Very relieved and very grateful that we’re in god shape 💕

💜 A LITTLE UPDATE ON LAYLA — AND WHY WE’RE STILL FACING SOME VERY SCARY MEDICAL UNCERTAINTY. 💜

Some people may not realize that even after a child receives a life-saving organ transplant, the medical journey doesn’t simply end. For families like ours, it can mean a lifetime of monitoring, medications, and navigating complications that most parents never have to think about.

I wanted to explain why Layla recently needed additional testing and what it means for us as a family.

🦠 WHAT IS EBV, AND WHY ARE HER LEVELS IMPORTANT?

EBV stands for Epstein-Barr virus. It’s an extremely common virus that most people are exposed to at some point in their lives. Once someone has been infected, the virus can remain in their body, usually under control by their immune system.

However, Layla is not in the same position as a child with a normally functioning immune system.

Because she received a liver transplant, she takes tacrolimus, an immunosuppressant medication. This medication is essential because it helps prevent her immune system from attacking and rejecting her transplanted liver.

But there is a difficult balance: the medication that protects her new liver also suppresses parts of her immune system that would normally help control viruses like EBV.

When EBV levels become elevated in a transplant recipient, doctors have to pay close attention because the virus can sometimes become associated with a serious complication called PTLD.

🩺 WHAT IS PTLD?

PTLD stands for Post-Transplant Lymphoproliferative Disorder.

In simple terms, it is a group of conditions in which certain white blood cells, called lymphocytes, begin multiplying abnormally after a transplant.

Some forms are associated with EBV, which can affect B cells. When the immune system is suppressed, it may not be able to keep those infected cells under control as effectively as it normally would.

PTLD can range in severity, including forms that behave like lymphoma, a type of cancer.

This is why elevated EBV levels in someone who has received a transplant and takes immunosuppressants cannot simply be ignored.

⚠️ DOES THIS MEAN LAYLA HAS PTLD?

No. And this is a really important distinction.

Having elevated EBV levels does NOT automatically mean someone has PTLD.

It means her medical team needs to investigate and monitor the situation carefully, especially given her transplant history and the medications she needs to remain healthy.

That uncertainty is what makes this so frightening. We have to take the possibility seriously without jumping to conclusions before all the necessary testing has been completed.

🔬 WHY DID SHE NEED FLOW CYTOMETRY?

Layla underwent a flow cytometry test to help evaluate her blood cells and look for abnormal populations of lymphocytes that could be associated with a lymphoproliferative disorder.

This type of testing helps doctors examine characteristics of individual cells and determine whether there are concerning patterns that warrant further investigation.

Her report states:

“Definitive flow cytometric features of a B or T cell lymphoproliferative disorder are not present.”

That is an important and encouraging finding.

However, the report also states that correlation with a biopsy is required for further evaluation.

In other words, this test did not identify definitive evidence of a B-cell or T-cell lymphoproliferative disorder in the sample examined, but it does not, by itself, completely rule out PTLD.

Her medical team has to interpret these findings alongside her EBV levels, clinical history, and any additional testing they determine is necessary.

We are still navigating the process of understanding what is happening and what it means for her.

💔 THE EMOTIONAL REALITY OF BEING HER MOM

There is a part of me that will never forget what it felt like to watch my baby fight for her life.

Layla was so little when she needed her liver transplant. We experienced things no parent should ever have to experience. We spent time in the hospital, endured frightening complications, and lived through the uncertainty of not knowing what her future would look like.

That transplant saved her life.

And every single day, I am grateful that she is here with us, growing, laughing, playing, and being the beautiful little girl she is.

But what people may not understand is that surviving something like that doesn’t mean the fear disappears.

When something new comes up medically, especially something involving elevated viral levels and the possibility of a serious transplant complication, it brings me right back to those moments when I felt completely helpless.

It brings back the anxiety.

The waiting.

The fear of receiving news that could change everything.

The feeling of having to be strong for your child when, internally, you are terrified.

As her mother, I want to protect her from everything. I want to take away every uncomfortable procedure, every blood draw, every hospital visit, and every scary possibility.

But I can’t.

I have to trust her medical team, ask questions, advocate for her, and sit with the uncertainty while we wait for answers.

And that is an incredibly difficult place to be.

💜 WE ARE GRATEFUL, BUT WE ARE ALSO SCARED.

Both things can be true.

We can be incredibly grateful that modern medicine gave our daughter a second chance at life while also acknowledging how emotionally exhausting and frightening the lifelong medical realities of transplantation can be.

I don’t want anyone to misunderstand this update. We are not saying Layla has PTLD. We are sharing why her doctors are taking her elevated EBV levels seriously and why further evaluation matters.

We are taking things one step at a time, holding on to the encouraging parts of her results, and waiting for the medical team to help us understand what comes next.

If you know a family with a transplant recipient, please remember that the journey doesn’t end when they leave the hospital.

Sometimes the hardest part is living with the uncertainty of what might happen next.

And sometimes, even when your child is doing well, a single medical report can bring back years of fear.

Please keep our girl in your thoughts as we continue navigating this journey. 💜

Layla got to see her favorite phlebotomist Carlos!!!!!!

Tacro levels have been higher than we like with her EBV. She’s been experiencing off and on diarrhea. We don’t know why. Samples were collected and I’m sure she’ll need a colonoscopy soon.

Never a dull moment in the transplant world 💚