Parents choose surgery to reshape baby's skull

Ten fingers. Ten toes. Nine pounds, six ounces of boy -- a "Matthew" at last, after an Addie and a Gracie. A blue blanket for the Hodgson family.

Born April 28, Matthew Hodgson looked perfect in the way all young parents hope for their newborns.

But in the happy rush after the Caesarean-section delivery, Holly Hodgson noticed Matthew's head was misshapen -- wide in the front and narrow in the back. And there was a knot on the back of his skull.

Three months later, on July 24, Matthew would undergo a delicate surgery at St. John's Hospital to remove parts of his skull and reshape it, while Holly sat in the waiting room, clutching the blue flannel blanket.

Rare condition

It's called "the soft spot."

When a baby is born, the seven bone plates of his skull are not yet "fused," or grown together. That allows the newborn's brain to grow to its intended size.

But in 1.6 newborns out of 1,000 births, one or more of the spaces or "sutures" between the bone plates close prematurely.

It restricts the brain's growth, forcing it to grow in any direction the skull will expand.

The condition is called "craniosynostosis."

Matthew had the most common form -- only one suture had fused lengthwise down his skull, giving his head a boat shape.

In more rare cases where two or more sutures fuse prematurely, the pressure of the growing brain can distort the shape of the face, eye sockets and jaw.

It can also cause increased cranial pressure, vision problems, and some doctors believe it causes developmental delays and brain damage.

Others believe a child's development is more affected by the deep psychological effect of going through life with such a severe deformity.

Researchers think the condition is caused by a problem with genes that determine growth.

It's not considered inherited -- Matthew won't necessarily pass it on to his children. But the condition shows up in families, doctors say.

When tests confirmed Matthew's condition, his parents' hearts sank. They could forgo surgery and face long-term consequences, or schedule the procedure.

It would be major surgery and meant a four- to five-day hospital stay. And there would be three years of follow-up visits.

Holly and her husband, Kerry, considered the alternative.

Holly concluded, "We have to do it."

Reshaping skulls

Not all misshapen heads are from craniosynostosis, however, said St. John's pediatric neurosurgeon Dr. Sami Khoshyomn.

In fact, only about 20 of the roughly 250 children that he sees for skull deformities each year require surgery.

The birth process can temporarily mold a newborn's head out of shape. Infants who are consistently placed on their backs to sleep can develop a flat skull.

Early diagnosis is important, Khoshyomn said. Surgery between 3 and 5 months old offers the best results. Infant skulls are easier to mold and heal rapidly.

Doctors who have performed the surgery over the past 34 years report that it is more difficult and the risks are higher after the child's first year.

Some families choose to travel out of town for the surgery, a cost hardship for many and far from family and friends. The Hodgsons learned a team in the health care system they use offered the procedure in Springfield.

St. John's Dr. Khoshyomn and Dr. Bharat Shah, a plastic reconstructive surgeon, and their neurosurgery team have been surgically correcting the congenital skull deformities for about two years. Neurosurgeons at Springfield Neurological & Spine Institute, aligned with CoxHealth, also do craniosynostosis surgery.

The St. John's team has done about 20 procedures in two years, the same number surgeons at a St. Louis children's hospital said they've done in the same period, Dr. Khoshyomn said.

He and Dr. Shah explained the details of the surgery for the Hodgsons, from the lengthy pre-surgery prep, expected recovery time and scarring, and the surgical risks -- bleeding and infection.

Holly also talked to another family whose 6-month-old son had the same surgery months before. He's doing great, she said.

"It was kind of a relief," she said.

Saying goodbye

After daybreak on July 24, with Matthew bundled in the blue flannel blanket, Holly and Kerry cradled him at St. John's before surgery.

Soon a nurse came in.

"She let us give him a kiss goodbye," then gave the blanket to Holly and carried him into surgery. "Carried him," she said, instead of laying him on a gurney. "That made me feel better."

Kerry and Holly settled in the waiting room, surrounded by parents, in-laws and church friends.

"I know he's not going to know or feel anything," Kerry said, "but nobody wants their child to go through that. We handed him over this morning, wishing we could take the pain for him. They're so fragile and little..."

Under the knife

In the operating room, the surgery team spent two hours preparing Matthew for the procedure. Infants require meticulous care with anesthesia and monitors for blood levels and blood pressure.

The surgeons spent 30 minutes, alone, placing Matthew's body in the precise position -- "like a sphinx," the surgeons said.

The nearly two-hour surgery began with a zig-zag incision across Matthew's scalp from ear to ear, allowing access to his skull.

Then Dr. Khoshyomn made the first cut lengthwise down the skull, mindful of the brain's largest vein just below the incision.

Any injury to that can cause serious blood loss -- the single most-worrisome complication of the surgery, Dr. Khoshyomn said.

"Not injuring that vein is the only thing that gets my heart beating," he said.

The complication occurs about once every two to three years in the United States, he said.

The surgeons keep blood reserves on hand for that reason.

Once he made the cuts, Khoshyomn removed pieces of the skull bone in a T-pattern across the top of Matthew's head.

"The instant you remove that (closed) suture, you can actually see the head widen because it's been constricted all that time," Dr. Shah said.

At that point, Dr. Shah gently remodeled Matthew's skull with his gloved hands and specialized bone-bending instruments.

The repair was secured with four plates and 24 pins made of a material that over time absorb into the skull.

Dr. Shah then closed the incisions and skin flaps with about 100 reabsorbable stitches.

"Matthew's surgery went very smoothly, and he did very well," Dr. Shah said. "The bone reshaping was exactly as planned, and the absorbable plates and ultrasonic screws worked well."

The technical science, however, was lost that morning on the anxious Hodgsons, who wrung the blue blanket and waited for word of their son.

Life after surgery

When the doctors met the family after surgery with the good news, Holly said, "I was just so relieved to see them and to know it was over."

Matthew would have some swelling and a zig-zag pattern across his scalp that would disappear under hair in time, they reassured the parents.

He would soon switch from morphine to Tylenol for several days, but he wasn't expected to have much pain.

When the Hodgsons finally saw their baby that Thursday afternoon, Holly remembers thinking the swelling didn't look so bad.

His ears stuck out -- "like a little Mickey Mouse."

By Friday morning, a nurse was feeding him a bottle.

"He opened those big eyes and gave us a great smile," Holly said.

Matthew went home that Sunday to his own crib, where he sleeps contentedly every night bundled in his blue blanket.

"He's a happy little boy, smiling all the time," Holly said.

Within weeks, Matthew will be measured for a "cranio-molding helmet," which he'll have to wear 20 hours a day for three to six months.

It will help speed the reshaping process. He isn't expected to have any residual issues or pain from the surgery.

The estimated total cost of Matthew's ordeal could fall in the range of $44,887 and $61,111, hospital officials said.

Dr. Khoshyomn doesn't want cost to discourage families from seeking help -- "We put zero barriers based on a patient's ability to pay for children," he said.

The Hodgsons hope their insurance will provide, "but it's worth it," Holly said.

"I do all kinds of surgery," Dr. Shah said, "and this definitely is the most important.

"You get big results, and you know that you've made a big change in that child's life."