Peyton's progress

There is something wrong. I can't tell you what it is. The doctor will have to tell you.

Corrie Young let the words sink in as she sat on a hospital bed in the spring of 1996, having just completed the first ultrasound of her first pregnancy.

The horrific words came from the lips of an ultrasound technician. The specifics could only come from a doctor.

Fast forward to Christmas 2002.

Mike and Corrie Young's first-born son Peyton is legally blind, though he sees better than he can hear. He cannot hear anything without a device that magnetically attaches to a metal implant in the left side of his head.

He cannot talk; he cannot swallow food. He is missing the part of his inner ear that helps with balance.

He cannot wrestle with his feisty brother Cy, who will turn 4 on Sunday. He cannot hold or kiss his infant sister, Mary Catherine, who was born on Thanksgiving Day.

Peyton is totally dependent on Mike, Corrie and a host of friends, family members and educators.

The past six years have been a tumultuous journey for Mike and Corrie Young. Their white-picket dreams were wrecked by a rare condition called CHARGE Syndrome. The syndrome, an acronym for the birth defects associated with the condition, has tested their patience and driven them to tears, but their dedication to Peyton has not wavered.

They have prayed through nearly two dozen surgeries, scores of doctor visits, a period of starvation and almost death.

In return, Peyton has given his mother and father the best kind of gift this Christmas season.

Their first son is walking.

Finally walking.

What's wrong?

On that spring day in 1996, horrible thoughts were running through Corrie's mind. She had 500 questions and no answers.

What is wrong? What's wrong with my baby?

Corrie and her husband Mike, just moments earlier, had found out their first child would be a son. It was the happiest moment of Mike's life. He was hoping for a boy.

He left the room momentarily to get a drink of water and returned to find Corrie crying in the hall.

"There's something wrong," Corrie said.

The Catholic couple immediately kneeled near a window of Southeast Missouri Hospital that overlooks Capaha Park. And, for a 20-minute eternity -- until the doctor returned with the first bad news -- Mike and Corrie prayed.

Please Lord, please don't let it be anything serious. Please don't let it be anything we can't handle.

Meet the parents

Mike, a manager at his family business, Patrick Furniture, met Corrie at a party in college. They married on Dec. 19, 1992.

Corrie, originally from Red Bud, Ill., stays home with her children.

They live in a spacious, well-kept, fairly new house in the Lexington Place subdivision in Cape Girardeau. A minivan and an SUV sit in a two-car garage, a fireplace decorates the living room; and their furniture, Mike will tell you, is second to none. They have a dog and a cat.

Mike and Corrie waited four years after they were married to have children. If it was in God's plans, they figured, a child would be conceived. They were in no hurry.

Corrie was "semi-surprised" when she found out she was pregnant. She discovered the news just in time to cancel a skiing trip to Sweden. A pregnant woman shouldn't be skiing, they reasoned.

Mike stayed with a family for two years in Sweden as a high school and college foreign exchange student, and while he was there, he became attached to the entire family, including a boy who had a severe case of muscular dystrophy. The boy, Albin Danielson, has since died. In hindsight, Mike says Albin helped prepare him for Peyton by erasing his fears of raising a disabled child.

Up until five months, Corrie thought her pregnancy was normal. She heard the heartbeat. She felt the movements. Everything seemed fine.

Until the five-month ultrasound.

When the radiologist finally came back after the 20-minute eternity with the first bad news, he told Mike and Corrie that their child had a Dandy Walker cyst, a brain abnormality that can be minor but can cause brain damage. Dandy Walker cysts are unrelated to CHARGE Syndrome, but it ended up being the first entry on a long list of bad news.

Mike and Corrie were sent to St. Louis for further analysis the day after receiving the first bad news. They hoped the technician and radiologist at Southeast had made a mistake. But more specific ultrasounds in St. Louis discovered that, in addition to the Dandy Walker cyst, the baby's right kidney was deformed.

Doctors became nervous after finding this flaw. More than one abnormality is a clue that a child could have a syndrome. And there was no telling how many other things they might find wrong.

Twenty-four hours earlier, Corrie hoped she would have a baby boy. Now, her hope was that her baby would live past birth.

Eventually, after a few more months, Peyton continued to grow and develop normally in Corrie's womb. Ultrasounds showed the heart was fine, and Corrie talked herself into believing the two problems were a fluke, two separate issues. Two minor, separate issues.

Smooth delivery

At 2:11 a.m., Friday, Sept. 6, 1996, Peyton Douglas Young was born at Barnes Hospital in St. Louis by Caesarean section with no complications. He weighed 6 pounds, 9 ounces.

When he was born, he looked healthy and scored high on the APGAR test, the standard which measures babies' health in the first post-partum minutes.

But doctors soon discovered that much more was wrong with Peyton than a cyst and a kidney defect. They found two holes in his heart.

The heart defects did not require immediate surgery, but Peyton did not eat well, a common problem for babies with heart defects.

Over the first six weeks of Peyton's life, Mike and Corrie grew frustrated and horrified as they watched their son get dangerously thin. By the time he was 3 months old, he was only about a pound over his birth weight. Ghastly photos in the family album show Peyton as a skeleton with pale skin.

When Peyton was 6 weeks old, his parents took him to Children's Hospital in St. Louis. One of the first things doctors did was try to insert a nasal gastric tube up Peyton's left nostril. The feeding tube is normally to be inserted through the nose and to the stomach, but doctors found that Peyton had a blocked left nasal passage.

Instead, the doctors put the tube up the right side of his nose and Peyton began to gain weight.

But the blocked nasal passage was the piece that solved Peyton's puzzle for doctors.

Atresia (blocked) choanae (nose passage) is the "A" in CHARGE.

The doctors told Mike and Corrie that their son might have CHARGE Syndrome.

Mike and Corrie were baffled when the doctors told them of the unusual genetic, though not hereditary, disease that usually comes with at least some vision and hearing loss.

The news was devastating and probably made that the most difficult hospital visit for Mike and Corrie. They went into the hospital thinking there were only a couple things wrong with their son and found there was little that wasn't wrong. They did the only thing they knew to do. They prayed and they coped.

Code blue

On top of learning that their child had CHARGE, the Youngs learned their son would need heart surgery soon. His heart was having to work too hard and burned too many calories for him to gain weight.

Because Peyton was so sickly the first three months of his life, Mike and Corrie had a confident, eager attitude going into Children's Hospital when it came time for their son's first heart surgeries. The surgeons cut open Peyton's chest, patched one hole and stitched the other.

The surgery went fine, but the recovery didn't.

Three days after his heart surgery, a team of doctors burst through the intensive care doors.

Mike and Corrie were waiting outside intensive care a few minutes before 10 a.m., the time when family was allowed to enter ICU.

At first, Mike and Corrie didn't suspect the doctors were going in for their son. They had no idea Peyton had stopped breathing. Mike opened the door slightly and peeked through the door. He saw what looked like 20 doctors surrounding his son's bed.

"What's going on?" Mike blurted.

"They're working on him," a nurse responded. The doctors were performing CPR on Peyton.

Again, Mike and Corrie prayed. And coped.

Complications from the surgery had caused Peyton's lung to collapse. The doctors got him breathing again, put him on a ventilator and everything turned out fine.

Peyton started gaining weight. In a matter of days, he looked healthier.

Three months later, surgeons installed a "G" button, a contraption which made feeding Peyton much easier. The button is like the valve of a beach ball. Mike, Corrie and Peyton's caretakers feed him formula from a syringe directly to his stomach 12 times per day, and he is hooked up to a feeding pump at night.

In September 1997, Peyton contracted a severe respiratory virus and had to be flown to St. Louis. Peyton was in ICU for a month and on a ventilator and coma-inducing drugs most of the time.

In March 1999, Peyton had his second open-heart surgery. In that procedure, surgeons cleaned up blockage below his aorta, the major artery from the heart. Because of that procedure, his aortic valve now leaks, and he will have to have it surgically replaced in another year or two.

After that, Peyton's major medical needs were over for a while. That's when Mike and Corrie could start worrying less about his health and more about the development of their sandy-haired, blue-eyed boy.

Inside Peyton's mind

If we could only get inside his body and see how he sees and hear how he hears. It would help us so much to help him.

Mike often says this to himself when he looks at his son. He and Corrie catch glimpses of a bright mind that has been trapped in a body that just doesn't work like it should. They wonder how much their son knows, how much he understands, but cannot express.

Peyton's education began with First Steps, a program for children ages birth to 3, followed with early childhood and kindergarten at Alma Schrader Elementary School. Speech, occupational and physical therapists have been working with Peyton since he was a few months old.

Peyton's vision is good enough that, in a group of people, he will go to his parents first. He can recognize certain shapes and figures and he recognizes the driveway of Jim and Barb "Mimi" Crain's house, where he loves to go swimming during the summer. He claps and screeches when he's excited about something.

When Peyton was 3, surgeons inserted a cochlear implant into the left side of his head. Peyton's cochlea, the snail-shaped part of his inner ear, was severely misshapen. The implant works to some extent, but it's difficult to tell how much he can hear.

Being deaf and legally blind makes education difficult. Peyton relies heavily on touch. That's why he lays on the gravel at recess at school, why he lays and rolls around in the snow, why he always goes barefoot at his house, why he once crawled into the kitchen sink, turned the water on himself and accidentally flooded the kitchen and basement.

Peyton has made tremendous strides in the last six months, both academically and socially.

Peyton's personal aide, Nancy Robertson, watches out for him during school. Officially called an "entervener," the term for the aide of a blind and deaf child, Robertson feeds him, changes his diapers, escorts him to special education and therapy sessions and helps him communicate with others. She makes school possible for Peyton. The pair has formed an obvious bond.

Peyton's speech therapist, Elaine Beussink, is teaching Peyton to communicate his wants.

Mike and Corrie desperately want to communicate with Peyton. They know many of his likes and dislikes, and he has ways of showing them what he wants. For example, he'll take Mike's hand and direct him toward the television when he wants it turned on. But the Youngs yearn for the day when they can have some sort of give-and-take, when they can tell him no and be able to make him understand why.

If that ever happens, Beussink and any future speech therapist will play a role. Peyton may never be able to talk, but he is picking up some sign language. When one of his instructors took a toy away from Peyton last week, he signed "more."

Beussink and Peyton's special education teacher, Mandy Deimund, are also teaching him to pick out small items that represent larger ones as a way of telling people what he wants.

He sits 20 minutes with his other kindergarten classmates at group time, when the class gathers on a large carpet for stories and activities. He couldn't sit up for that long at the beginning of the year. Depending on the day, Peyton spends about an hour or two in his regular kindergarten class every day. The rest of the time, he is with his therapists or the special education instructor.

It didn't take long for the other, "normal," children to get used to him. Sharon Shaw, Peyton's kindergarten teacher, took time early on to answer questions at the beginning of the year. When he would grin that big grin of his and make a loud noise, Shaw would tell the students, "Peyton is telling us he is happy."

The children have picked up on Peyton's language. They've become his friends. Several of his classmates give him hugs throughout the day. Some catch him as Robertson pushes him down the yellow slide in the playground. A few of the girls have even called him their boyfriend.

Major strides

Mike had his doubts that Peyton would ever walk. Mike says he's from the Show Me State, and he generally takes that attitude with everything. He'll believe it when he sees it.

One November afternoon, Peyton had something to show his dad.

Dawn Smathers, Peyton's physical therapist, had been working with Peyton. She attached a belt around his waist and held onto an attached loop to give Peyton support while he walked. As long as Peyton knew she was holding onto it, he would walk. Eventually, Smathers was able to let go without Peyton knowing and he would take eight to 10 steps at a time.

When Mike went to pick up Peyton that afternoon, Smathers said, "Mike, we've got something to show you."

And there Peyton took off, one wobbly step after another with Smathers gripping the belt.

When Smathers let go and Peyton took those steps, tears filled Mike's eyes.

The boy who was missing the balancing mechanism in his ear, the boy who can barely see, the boy who had the Dandy Walker cyst was walking.

Finally walking.

And just like he had done so many other times throughout Peyton's life, Mike spoke to God again.

Thank you, God.

Peyton doesn't walk all the time yet. He has to be in the right mood. But there are times that he walks without being tricked into it.

Mike couldn't be prouder of Peyton. He puts on what he calls the "Peyton Show" to anyone willing to watch. The day he learned to walk, Peyton walked a few steps to his hairstylist, Amy Twidwell. There wasn't a dry eye in the place.

Many unknowns

Corrie says Peyton will end up accomplishing more than anyone thinks he will, but she stops at setting specific goals.

The future is uncertain and scary. CHARGE Syndrome children have a normal life expectancy.

Once all of Peyton's medical ailments are fixed -- particularly his aorta -- he could outlive Mike and Corrie. That's one reason the Youngs decided to have more children.

They don't expect Cy and Mary Catherine to take care of Peyton, but they hope they will.

In the meantime, Mike and Corrie -- who has been mistaken for a doctor because of her familiarity with the medical terms she has learned over the last six years -- will try to provide the best environment for Peyton to learn and grow. They'll continue to take him to St. Louis 10 or 12 times a year, continue to overlook messes and continue to cry.

But they'll continue to count their blessings, too, as Peyton learns new things.

The most important thing they say they'll never stop doing: They'll continue to pray and cope.

bmiller@semissourian.com

335-6611, extension 127

To learn more about CHARGE Syndrome, visit http://www.chargesyndrome.org/