National Cleft and Craniofacial Month

A mother shares her story about her son.

During an ultrasound in her second trimester, Dea Torres was told that her baby had severe congenital abnormalities and wasn’t expected to live. Distraught and in disbelief, Torres sought a second opinion at Lucile Packard Children’s Hospital Stanford. There, she received a clearer diagnosis that gave her hope — her son had a cleft lip and palate.

Mathias was born at Packard Children’s eight years ago, and he spent the first month of his life in the NICU receiving treatment for his multiple congenital anomalies. He was just three months old when he had the first of many surgeries to correct his bilateral cleft lip and palate. He also had ear surgeries and one throat surgery to fix a breathing problem that nearly killed him when he was about three months old.

The near-fatal breathing problem was discovered one morning when his mother didn’t hear his normal loud breathing and went to his crib. She saw that he was purple from head to toe.

“I immediately started administering CPR, and his color returned,” she said. “Thank God I learned CPR while he was in the NICU because it saved his life. When we got him to the emergency room, the doctor said if I hadn’t done CPR or if had waited another five minutes, he would have died.”

Although the surgeries are less frequent now, Mathias can expect to have more when he’s a teenager. He will need to have rhinoplasty to fix his nose and orthodontic surgery to correct his teeth and gums.

Looking back over the past eight years, Torres says she’s thankful for the cleft and craniofacial team at Stanford Medicine Children’s, who have provided him with exceptional care.

“The medical staff go above and beyond,” she said. “They take their time and answer all of my questions. They tell it to you straight while at the same time laying out the different treatment options.”

Torres, her husband Patrick, Mathias, and his two brothers Darion and Cyrus all live in Sunnyvale, and they find support and joy in sharing their experiences at Packard Children’s annual family picnic.

“We look forward to the family picnic each year,” Torres said. “Mathias feels super special meeting and interacting with kids who are similar to him, unlike school, where he gets stares and remarks about his appearance. I also love meeting parents who are new to the whole experience. With everything we’ve been through with Mathias, I’m able to give them some advice and insight on what to expect and let them know that everything will be okay.”

For now, Mathias isn’t thinking about any upcoming surgeries. Instead, he’s looking forward to starting third grade, spending time with family and friends, and focusing on his latest interest — cheerleading.

“He loves to make people laugh. When he grows up, he says he wants to be a comedian and a doctor,” Torres adds.

Torres is also focusing on the future and raising her three active boys. However, she does stop to reflect from time to time on just how far they’ve come.

“I think back to that first ultrasound when I was told my son wouldn’t make it. It’s now eight years later, and he’s here and doing well,” she said. “It’s just crazy, and we are all so thankful.”

If you have any questions about cleft lip/palate or any other craniofacial issues, please contact our Cleft & Craniofacial Center at (650) 497-8265 or visit our website, craniofacial.stanfordchildrens.org.