Toddler’s Triumph over Birth Defect: Transforming Lucas’ Skull


ST. LOUIS. Missouri – (Ivanhoe Newswire) — One in every 33 babies are born with a birth defect each year. It impacts how the body looks, works, or both. Many can be corrected, yet some create lifelong challenges. New advancements in minimally invasive surgery are giving some of these babies hope of a completely normal life — correcting their birth defect before they celebrate their first birthday.

If it has motors, wheels, or it’s something they’re not supposed to touch, like our TV camera, you can bet twins Dylan and Lucas Parato will like it.

Angelo Parato, Lucas’ Dad says, “I always say, ‘If it’s not dangerous, they’re not interested.’”

Just two years ago, parents Angelo and Ashley didn’t know what the future held for their newborn Lucas.

Ashley Parato explains, “Compared to his brother when he was born, I could tell it was a little bit flatter.”

Lucas was born with Craniosynostosis. The bones of his skull fused together too early.

Kamlesh Patel, MD, Plastic Surgeon at Washington University at St. Louis Children’s Hospital says, “And if the skull’s not growing, then it has an impact on the brain.”

Lucas had a rare form of it. Birth defect

Doctor Patel says, “These two sutures in the back of the head were closed, as well as this suture, here, along the top of the head, it’s called a Mercedes-Benz type Craniosynostosis.”

Traditionally, surgery to correct the problem involved an incision from ear to ear, inserting a metal device into the skull that needed to be turned daily for a month, followed by another surgery to remove it. But now, doctors at Washington University are using a less invasive approach.

Doctor Patel explains, “The idea is like, just relieve that pressure, and just let the brain fix itself.”

Doctor Patel used endoscopic repair to separate the skull bones. “It’s smaller incisions, more targeted. You know, we’re talking a few, like, two-to-three-centimeter incisions to gain access.”

Lucas went home the next day. However, he did have to wear this helmet for nine months.

“The brain does double in the first six months of life and still continues to grow pretty fast after that. The idea of the helmet is, now it’s, like, guided, like, ‘okay, i want you to grow out in this direction that you were restricted before.’” Explains Doctor Patel.

Within weeks, Lucas’ parents noticed a difference. And now, the only helmet Lucas will need is when he trades in his bumper car for a race car.

Doctor Patel emphasizes that this procedure should be done within the first few months of life, as it becomes more challenging to keep the helmet on toddlers as they grow. Additionally, parents can expect their child’s head shape to continue to improve even after they stop wearing the helmet.

Contributors to this news report include: Marsha Lewis, Producer; Roque Correa and Kirk Manson, Videographers, Roque Correa, Editor.


REPORT #3119

BACKGROUND: Craniosynostosis is a birth defect in which the bones in a baby’s skull join too early. This happens before the baby’s brain is fully formed. As the baby’s brain grows, the skull can become more malformed. The spaces between a typical baby’s skull bones are filled with flexible material and called sutures. These sutures allow the skull to grow as the baby’s brain grows. Around two years of age, a child’s skull bones begin to join because the sutures become bone. When this occurs, the suture is said to “close.” In a baby with craniosynostosis, one or more of the sutures closes too early. This can limit or slow the growth of the baby’s brain. When a suture closes and the skull bones join too soon, the baby’s head will stop growing in only that part of the skull. In the other parts of the skull where the sutures have not joined together, the baby’s head will continue to grow. When that happens, the skull will have an abnormal shape, although the brain inside the skull has grown to its usual size.


SYMPTOMS AND DIAGNOSIS: The most common signs of craniosynostosis are changes in the shape of the head and face. One side of a child’s face may look markedly different from the other side. Less common signs may include a full or bulging fontanelle (soft spot located on the top of the head); sleepiness; very noticeable scalp veins; increased irritability; poor feeding; projectile vomiting; and increasing head circumference. Diagnosis involves thorough physical examination and diagnostic testing. A child’s doctor will start with a complete prenatal and birth history, asking about any family history of craniosynostosis or other head or face abnormalities. The doctor may also ask about developmental milestones, since craniosynostosis can be associated with other neuromuscular disorders. Developmental delays may require further medical follow-up for underlying problems. During the examination, the doctor will measure the circumference of your child’s head to identify normal and abnormal ranges.


NEW STUDY SHEDS LIGHT: According to a preclinical study led by researchers at Weill Cornell Medicine, craniosynostosis is caused by an abnormal excess of a previously unknown type of bone-forming stem cell. Researchers examined in detail what happens in the skull of mice with one of the most common mutations found in human craniosynostosis. The result was that mutation drives premature skull fusion by inducing the abnormal proliferation of a type of bone-making stem cell, the DDR2+ stem cell, that had never been described before. “We can now start to think about treating craniosynostosis not just with surgery but also by blocking this abnormal stem cell activity,” said Dr. Matt Greenblatt, study co-senior author, associate professor of pathology and laboratory medicine at Weill Cornell Medicine and pathologist at NewYork-Presbyterian/Weill Cornell Medical Center. The team found that CTSK+ stem cells normally suppress the production of the DDR2+ stem cells, however, the craniosynostosis gene mutation causes the CTSK+ stem cells to die off, allowing the DDR2+ cells to reproduce abnormally.


MORE FROM DR. KAMLESH: “I do these cases with neurosurgery. In this case, I did it with Dr. Strahle. We partner to obtain the best outcome while maintaining patient safety.”

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Laura High

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