Fighting for sight with Twin-to-Twin Transfusion Syndrome

HOUSTON - Local twins Atlas and Ayden are advocates for each other, as they navigate life after being diagnosed with Twin-to-Twin Transfusion Syndrome before they were even born. Their loving mom is their biggest advocate and often travels across the country to get Atlas help from specialists.  

What is Twin-to-Twin Transfusion Syndrome?

What we know:

Twin-to-Twin Transfusion Syndrome (TTTS) is a condition that involves uneven blood flow between twins sharing a placenta, leading to significant health challenges. It affects at least 10% of twin pregnancies when the twins are identical and share a placenta. It can lead to severe complications, including heart failure, neurological impairment, cerebral palsy, spina bifida, and developmental issues, and in Atlas' case, blindness. 

While Simone Brooks was pregnant with the boys, Atlas got weaker, trying to make his brother Ayden stronger. This led to Atlas losing his eyesight, and he is diagnosed with autism. TTTS can have severe consequences, yet it can also have positive outcomes.

What we don't know:

The exact causes of TTTS remain unclear. Research continues to improve understanding and treatment options.

Mother becomes relentless advocate

Simone has been a relentless advocate for her sons, especially Atlas, who has faced more than 30 surgeries and challenges due to blindness. She found a specialist in Pittsburgh familiar with his condition and traveled there more than 30 times in one year, when he was younger, to seek help. Despite these hurdles, both twins are thriving.

Local perspective:

Simone works in Houston and wants her boys to grow up here, even though Atlas' specialist is out-of-state. She is proud that local schools, like The Woodlands High School, are joining her effort to lift up Atlas and help support his dream. He adores providing play-by-plays, and the coaches at Woodlands High allowed him to make announcements at a basketball game.  

Big picture view:

TTTS is a global concern, with families worldwide facing similar challenges. Advances in medical technology offer hope, but early detection and intervention are crucial. Simone wants everyone to know that there can be positive outcomes with these children, and she's so thrilled she brought them into this world. "They pretty much wanted me to terminate the pregnancy, because if I continued with the pregnancy, there were very slim chances of them surviving. " Simone says. She goes on to say that, "With faith and hope, we've come this far."

Groundbreaking procedure could help Atlas

What's next:

Atlas may soon benefit from a groundbreaking procedure involving the optic nerve, potentially allowing him to see for the first time.

"They have now developed something more promising for Atlas," Simone says. "The chances of him seeing for the first time are extraordinary."

What they're saying:

"You can have vision, but no vision!  Atlas doesn't have vision, but he's got dreams. He's got determination, aspirations. We believe, and believing is essentially seeing, and that's hope. We are hopeful," exclaims Simone. Ayden also shares this special thought, "I am his eyes. He is the ears and everything else!"

Dig deeper:

You can find out more information about TTTS, by visiting https://www.ncbi.nlm.nih.gov/books/NBK563133