Beckwith-Wiedemann Syndrome: A warrior diagnosis

A BWS Guest Blog post by Megan Albrecht

“Promise me you’ll always remember you are braver than you believe, stronger than you seem, smarter than you think, and loved more than you’ll ever know.”

This very quote hangs in the nursery of our NICU Graduate, Kasey.                         

Beckwith baby with Dino Shirt

October 14, 2017, our lives changed forever. After a restless night of what I thought was just back pain, at only 29 weeks along, I found myself in Kettering Medical Center’s, Labor and Delivery. This was my husband and I’s first child, so we had zero idea what to expect. Our pregnancy had already been a roller coaster of emotions because at our 10-week ultrasound we found out our child had a rare birth defect called an omphalocele that would require closure surgery at Cincinnati Children’s shortly after birth.

At my 19 week appointment, the OB insisted on an amniocentesis to check for different genetic causes. We were told we wouldn’t receive the results until closer to our due date. We had been working hand and hand my entire pregnancy with my high-risk OB and the specialists at Children’s as we tried to figure out what was the cause of this rare defect and plan for the arrival of our miracle.

Listen for the cry

The number one thing that stuck out to me as I was learning about birth was “Listen for that first cry. That’ll be the telltale sign everything is okay!”. As I laid on that operating table, I waited and waited for that cry…the one that never came. Kasey ended up having to be resuscitated and put on a ventilator. I honestly don’t remember much from that day, and I’m not sure whether that’s the exhaustion, the meds, or my brain simply trying to delete a traumatic memory, but I do remember how I felt as I returned to my room without my baby boy. Empty. After being stabilized, Kasey was transported to Cincinnati Children’s where I finally got to meet our precious miracle for the first time after 3 days of life.

As our NICU stay progressed it seemed like the diagnoses poured out like a leaky faucet. Brain Bleed, Cystic PVL, Chronic Lung Disease, possible Cerebral Palsy, Hearing Loss, and the list went on. As each new challenge fell into our laps, we felt the weight of the world get heavier and heavier. I can honestly say to witness the strength of a baby born too soon, who goes up against life with every breath, is truly one of the most miraculous things I have ever witnessed.

Beckwith-Wiedemann Syndrome Diagnosis

The results of the amniocentesis came back a few weeks into our NICU stay. I remember that day like it was yesterday. Kasey was at the worst he had ever been settings wise on the ventilator. With every beep of the monitor, my anxiety level grew higher and higher. What looked like to be two doctors dressed in white coats approached me at Kasey’s bedside. They had a stack of papers that looked to be a mile high that they casually handed me as they peaked into Kasey’s isolette. I looked at the top of the paper and it read Beckwith Weidemann Syndrome”.

As they began to explain the intricate details of what chromosome does what and what happened and didn’t to cause our little boy to have this syndrome, I could feel myself melt into the chair. The words “ultrasound” “routine blood draw” and “Cancer” were being thrown around and I hadn’t even absorbed what Beckwith was, to begin with. I remember looking over at my son’s nurse with tears running down my face and her looking so helpless while the geneticists continued to speak to me. They asked me if I had any questions as if anyone wouldn’t have a million. I sat there in shock as they walked away. Kasey’s nurse instantly ran over and just hugged me as we mourned the news together.

That day was the beginning of our BWS journey. I used to think that BWS was a downfall, an issue, another scary diagnosis. Since then I have learned it is so much more. Don’t get me wrong, the cancer probabilities and routine hospital visits are just that – scary. BUT, as I learned more about what makes my son unique, and joined support groups just like this one, I soon learned what makes my little warrior just that- a warrior.

Our NICU stay lasted for 173 Days- a long and trying six months. After months and months on the ventilator, multiple surgeries, a G-tube, and countless tears, our baby was finally able to come home in April of 2018. Kasey currently follows up with many of the clinics at Cincinnati Children’s and is beating odds people never thought he would. In sharing our story, we hope to give you the reassurance that you are not alone in your journey with your little ones. Our beautiful miracles are making strides and defying odds daily. Hold tight to the truth that prayer is powerful and brighter days are soon to come!

Megan & Grant Albrecht

Live Large & Stay RARE.
XOXO Theresa

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