“Aw he’s so cute, look at him sticking out his tongue!”

“How come his tongue is never in his mouth?”

“He was born when?! He’s huge!”

“What’s with his tongue?”

These are just a few of the many questions we received and continue to receive about our son Owen’s appearance. He was born with Beckwith-Wiedemann Syndrome, a rare genetic syndrome that increases his risk of developing childhood cancer. For Owen, it also affected the growth of certain areas of his body. He was born with an extremely large tongue, large belly, and hemihypertrophy (one side of his body being bigger than the other side). Owen was also overall a large child. He was just shy of 12 pounds when he was delivered by c-section.

Our family was lucky in the sense that Owen was diagnosed so early, at about two weeks of age. We live near the Children’s Hospital of Philadelphia, which is one of the only hospitals in the United States that has a team dedicated to researching and discovering more about BWS. When we received his diagnosis, I frantically started googling everything I could. I couldn't believe our son was diagnosed with something that I literally have never heard of before…even the doctors needed google to look up his syndrome and see how to best treat it.

Owen’s first year of life was a whirlwind. There was so many specialists to see, so many doctors appointments to go to. His syndrome crosses so many areas of expertise that he needs several specialists coordinated in his care. The scariest aspect of his syndrome is his cancer risk. The type of BWS that Owen has puts him at a 1 in 4 risk of developing childhood cancer. BWS is characterized by overgrowth, making BWS kids who get cancer at a greater risk because their rate of growth is so much more rapid than that of a normal child. Owen receives ultrasounds and bloodwork every three months to monitor him for cancerous tumors.

Among some of the specialists, he needed to see a plastic surgeon sooner rather than later because his tongue was so big, and it was blocking his airway when he slept. He would constantly choke on it and gag, especially in his sleep or when he would eat. He had a sleep study done and it was decided that Owen needed intervention on his tongue ASAP. So at just 7 weeks of age, Owen had two inches removed from his tongue. He was on a ventilator for 5 days and in the hospital a total of 10 days. Seeing our son like that was some of the hardest days we have experienced so far. And trying to explain it to our 4 year old was even harder. He missed his little brother so much. Since Owen’s tongue reduction his tongue has since grown so he may need another one in the near future.

Owen continues to see doctors in genetics, pulmonology, plastic surgery, ENT, orthopedic, and radiology. He also has early intervention for speech therapy and occupational therapy. Owen is a strong and fearless child and I truly believe part of that is because of being born with his syndrome. He takes everything on with such strength; it amazes me. For someone so little to go through everything he has to go through, it really shows me what is truly important in life. He never complains and takes each day at a time. It’s like he already knows how to handle the hand he has been dealt.

I never knew what strength was until I met our son. I thought I did, but I realize now that I had no idea until he came into our life. I want the world to learn about children like him and see them for who they are - strong, determined, amazing human beings who will no doubt move mountains one day. I want people who notice his differences (his tongue, his legs) to see him as someone who prospers from them. Not someone who is inhibited. Maybe one day people will look at children like him and any that are born different with the same eyes they look at everyone else with. I hope they look beyond physical differences and see what I see when I look at my son, a happy and strong amazing blessing who was born for a reason,

a reason I’m happy to figure out with him!

To learn more about Owen and follow the Thomas family’s journey, follow @largerthanbws on Instagram, Larger than BWS on Facebook and visit www.largerthanbws.com!

a reason I’m happy to figure out with him!

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