What To Do When Your Baby Needs Brain Surgery

I was devastated and shocked when I learned that my first great-granddaughter required emergency brain surgery. She was just two months old. The diagnosis was officially craniosynostosis, meaning that the five bones that comprised her skull had been fused, making it impossible for her brain to expand.

The operation needed to be performed before she reached the age of three months old, or it could result in permanent injury. The parents were given only a couple of months to undergo the procedure and seek an additional opinion, identify a qualified surgeon, investigate the costs, and deal with the situation.  

When they studied the condition, they found that an infant's normal skull cap comprises five bones held together by sutures, a fibrous tissue. They're not closed but are left open to allow the brain to expand and grow normally. This is why a baby is born with a "soft area" at the top of the head of the baby. The baby's parents discovered that this was an uncommon diagnosis and that 1 in 2 thousand babies have any form of craniosynostosis. Most are only diagnosed once it's too late or never.

Baby Lexies Mom was concerned about the peculiar shape of her baby's head. It required a third and fourth pediatrician before she was diagnosed. Fortunately for us, it was in time we could take action about it. A series of X-rays was finally ordered and followed by a scan to confirm that our two-month-old baby was scheduled to undergo an extremely risky brain surgery that would be invasive to ease the pressures on the front of her brain.

Her parents' initial reaction to the news was shock, numbness, and disbelief. However, they didn't have time to think about the situation; they had to be prepared and react swiftly to address the problem they faced. They had only one month. It was a matter of time. They concluded that the best option to ensure baby Lexie had an ordinary life was to proceed with surgery.

Once the decision was taken, a surgeon needed to be located. They conducted exhaustive research to find the most skilled neurosurgeon for children. In the end, they found the Best Brain surgeons in San Antonio, TX. He is a specialist in brain tumors that are benign and malignant. Parents were relieved to learn that the surgery that little Lexie required was one that the doctor was performing regularly.

They were nervous and didn't know what to anticipate during or after surgery. Recovery after surgery and the four days in the newborn ICU were difficult and depressing, even more than the anticipation before surgery. Lexie's first recovery was difficult for all of us. She was utterly helpless, suffering from swelling and discomfort. Her parents weren't ready for the massive volume of the node that afflicted her head and face. Even her eyes were closed, and her eyelids were closed upwards. It was a sigh of pain to her Mom to see her child in such a state, but she was never away from her family's side.

The best part is that, three months later, she is an active, healthy, flourishing, beautiful baby who is developing normally.

The negative good news... the moment Lexie had her second-month exam last week, and her parents thought it was gone and about to be erased... it was revealed that the doctor did a single glance at little Lexie and advised her parents that she'd require additional surgery at a later time to help balance her head and neck. He reported to them that it was too late to say much. He will be able to give more details at the next visit in three months.

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