If you are new to our Beckwith-Wiedemann family, you may be asking yourself what is TR? And why does every BWS parent talk about TR? If you are like me, it took me weeks to figure out what TR or TRS meant, and I was too ashamed to ask someone in our group so I waited until that one mom typed it out (thank you to whoever you were)! So let me save you some time:
TR/TRS= Tongue Reduction Surgery
It took 4 years for this TR post. Not because it wasn’t important, but due to the emotions that are brought up when watching the videos or seeing the pictures from his surgery. It was a time in our life that I wanted to forget because it was painful to watch him go through it. But, I also think it is important to remember our journey. We have only come this far as a family through God’s grace and loving hands guiding us and strengthening us. And when I look back over those first few difficult years, I am amazed at how far Jake has come.
When Jake was born with Beckwith-Wiedemann Syndrome, we knew one of the conditions of the syndrome was an enlarged tongue. In the NICU he was on a feeding tube due to his tongue size, but it was only slightly enlarged. By the time he was 3 months old, his tongue had tripled in size. He was having issues with breathing, sleeping, and being able to feed from a bottle. I still remember agonizing over whether or not to do the surgery. We had half the medical team suggest surgery, while the other half argued he may “grow into his tongue”. In the end, out of medical necessity we chose to have the TR surgery.
We flew to St. Louis to see Dr. Marsh. The recovery was the most difficult part to watch him go through. It was long and there were lots of tears having to force him to eat and watch him learn to use his new tongue. But, after the swelling went down, he healed quickly. I still remember the day he put his lips together for the first time and blew bubbles at me. I had streams of happy tears rolling down my cheeks. It was then that I knew we had made the right decision.
By 3 weeks post-op, he was able to feed from a bottle in less than 30 minutes (which used to take over an hour each feeding), his breathing improved, and he started making more baby babbling noises. Although the surgery allowed his tongue to fit inside his mouth, the lack of movement/flexibility and thickness of his tongue was still an issue. He was in feeding therapy starting around 9 months old. Eating pureed and solid food was a challenge for him as everything was pushed out by his large tongue.
Fast forward 4 years: His eating has improved tremendously and most people don’t even notice his tongue size anymore. We still need to cut his food into smaller pieces as he still has a slight open bite which makes biting things more difficult. We are constantly reminding him to chew as he gets tired of chewing and will resort to swallowing food whole (which at times has resulted in the Heimlich maneuver). I am now known in my mommy-group as the one who can finger sweep any child’s mouth for a foreign object in less than 5 seconds. The only other issue we are still working on is his speech. He is very delayed in speech pronunciation. He drops most ending sounds of words, and a lot of sounds are difficult for him to say. He is in speech therapy through the public school as well as private. We weren’t seeing an improvement in his speech until recently. But in talking with other parents who went through the same thing, they said their child was speaking clearly by 4th grade.
I’m so excited to share his TR results video with you. It was the most difficult decision we had to make and the results remind me every day that we made the right decision for him. I know the agony you are facing when having to elect surgery so I hope this video helps you see the other side of recovery. Some of the photos are graphic post-surgery, but I promise, the results are astonishing. We are so thankful for his surgery which allowed Jake to eat, breathe, and talk like any other kid. Please feel free to ask any questions you may have regarding the surgery.
I truly believe BWS stands for: Babies With Strength!
Jake’s Tongue Reduction Post-op Video
You may also like to read our post from the week of Jake’s TR Surgery: