Live Larger

Hi! My name is Theresa Thomas, and I am a mom of two boys, one of which has a rare disease called Beckwith-Wiedemann Syndrome. My boys are ages 8 and 5. Michael Jr. is our oldest, and Owen is our youngest. Our 5-year-old, Owen, was born with Beckwith-Wiedemann Syndrome (BWS), which is something you probably have never heard of. It's okay, I never did either before we had him! 

When Owen was born, I had a gut feeling he had something going on. My entire pregnancy, I felt like something just wasn't quite right. I was carrying and showing way quicker than I did with my first son, and Owen just felt very large. I knew what having a large baby felt like (my older son was 8 pounds 13 ounces), but this was much different. I remember saying to my doctor that I was scared my baby was going to be 12 pounds. The doctors agreed I was large, but thought I was just carrying a bigger baby.

Fast forward to having Owen, he was just shy of 12 pounds, and he was 24 inches long! I had Owen via C-Section because I kept advocating that I knew in my gut he was a larger baby. The doctors were not happy with me that I refused a vaginal delivery, but to this day I thank God that he was my second child and not my first because I was able to know that he was much bigger than they thought. 

When Owen was born he had a very large tongue that almost touched his chin. I immediately noticed it, and my husband and I mentioned it to his doctors. We were initially told that it was just swollen, and it would go back to a normal size, but thankfully between my gut and my nurse helping me advocate, we pushed the issue. Owen had a lot of other signs of BWS when he was born. He has hemihypertrophy (one side of the body bigger than the other), low blood sugar at birth, ear pits, enlarged tongue, and diastasis recti. He went to the NICU due to low blood sugar, so while he was there, I started to push the issue that I thought he had BWS. After searching on Google for the signs I was seeing, I came across BWS, and I knew right away this is what he had. I kept pushing for the doctors to examine him, and I told them his limbs were uneven. They finally listened and started to look at him more closely. It was then that they agreed there was cause for concern and contacted the Children's Hospital of Philadelphia and their BWS team. We saw them two weeks later, and Owen was formally diagnosed with having BWS.

During the first 2 years of Owen's life, it was difficult. He needed a tongue reduction surgery because his tongue was causing him to choke, and he would stop breathing in his sleep. I also was adjusting to the fact that my child has an increased risk of getting cancer. I think that was the most difficult part. With BWS, they have an increased risk of developing cancer, so they give them ultrasounds every three months until age 7 and blood draws every three months until the age of four. I was overwhelmed and felt so alone. I didn't feel like I had anyone that really understood what that roller coaster felt like. You would go to a cancer scan and get the 'all clear' and initially feel relief, but then as the next set of scans and blood draws drew near again, panic would set in. It was a very difficult time. I was a mom of two, and I had no idea what the future would hold for my new baby. It was during this time that my husband

encouraged me to blog and get my feelings out and hopefully find other families that were going through something similar. So, I created my blog and social media pages called "Larger than BWS". I just wanted to find other people who knew exactly what this life was like. Through doing that, I was able to connect with families all over the world. It brought me so much hope and comfort. The more I connected with families I also realized that most people did not have the same standard or care that we had strictly because of where they lived. I just so happened to live near the top center for BWS, something I am still grateful for to this day. I kept connected with families all over the world who were telling me their child has all the signs but their doctors won't listen. So, I started to help them advocate and just really wanted to be a support system for them. I started to send them information sheets from CHOP as well as the BWS team's info. We have been sharing our family's story for about 4 years now, and we have been able to help so many children get diagnosed and families to connect with one another and find the support and resources they need. 

I would say one of the hardest things in the beginning was navigating how his doctor appointments affected him and each member of our family. I carried a lot of guilt with my oldest because I was always away with Owen and naturally dedicating more time to him. My biggest advice is to give yourself grace when it comes to things like that. Carve out special time for your other children, but try not to be too hard on yourself. 

I think with time Owen handles his appointments much better. They were more difficult when he was younger because I couldn't really explain why things were happening or reason with him. But as he has gotten older, that aspect of it has gotten easier.

Currently, Owen is thriving! I cannot say that enough. I know the fear of wondering how this condition will affect him. Will he be able to do sports? I know now yes! He can and he does them amazingly! His strength and ability is unlike anything I have ever seen! How will he talk? With early help from a speech therapist! He talks just fine and has no issues communicating with his friends. He does sometimes struggle with his legs being different lengths but overall they do not hinder him! He plays up in sports because of how big and strong he is. 

Overall, I would never change my son's story or wish he wasn't born the way he is. He is who he is--BWS and all--and even though it can be difficult and trying at times, we never let it hinder him. We always build him up and tell him he can do anything he puts his mind to. 

Live Larger 

Theresa Thomas 

Founder of largerthanbws – Living Larger (wordpress.com)

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