Difficult diagnosis

The baby's condition got worse and the doctors couldn'tfigure out what was wrong with him.
By WILLIAM K. ALCORN
VINDICATOR HEALTH WRITER
WARREN -- Luke Laukhart's older brother and sisters had listened to him screaming in pain, flailing and pounding his head on the floor and wall for a year, and worried he was going to die.
Luke's parents, Herbert Jr. and Sarah Laukhart of Warren, had the same fear as they helplessly watched their son suffer and deteriorate.
"When Luke would get into severe attacks, we'd both try to hold him. I'd say, 'God, please help my son.' I was afraid he was going to die in my arms. I thought he would die before anybody believed me," said Sarah, a licensed practical nurse. Herbert is chief deputy for the Trumbull County clerk of courts.
She believed pressure on the brain was causing Luke's pain, but the more than 20 doctors she took him to disagreed.
"They told me it was migraine headaches," she said.
"Imagine your worst migraine headache and multiply the pain by 100. That's what doctors [at Johns Hopkins University Hospital] say Luke suffered," Sarah said.
Diagnosis: Luke, now 21/2, was finally diagnosed in December, 2000, with microcephaly, a condition in which the cranial capacity is abnormally small, and craniosynostosis, a condition in which the metopic bone in the forehead closes too soon and does not leave enough room for the brain.
"His brain was beating so hard against his forehead it actually made bumps in the bone," Sarah said.
Before the surgery, the Laukharts went through a year of sleepless nights, exhaustion and watching their child hurt and not being able to help him.
There were countless hours on the phone and traveling, looking for a doctor who would help them, one who would believe them.
"The surgery cost $30,000. The diagnosis cost $100,000," Sarah said.
First inkling: Luke was about 6 months old when Sarah's sister-in-law, Marybeth Bansky of Howland, was at her hair salon and saw a Johns Hopkins University magazine with an article on craniosynostosis.
She recognized the word and realized that was what Sarah believed Luke was suffering with. She gave Sarah the article, which featured Dr. Benjamin S. Carson Sr., a world-famous neurosurgeon at Johns Hopkins.
But Sarah continued to look locally and elsewhere for help, and did not immediately act on the information in the article. She even traveled to St. Louis, Mo., to see a doctor, and called all over the world. Still nothing.
Finally, almost a year after Bansky had given her the Johns Hopkins article, Sarah started calling Dr. Carson.
After seeing Luke's MRIs and CAT scans, Dr. Carson called them to Baltimore on Dec. 6, 2000, for an examination. Luke's surgery was done Jan. 10, 2001.
The surgery involved removal of Luke's forehead bone, cutting it into pieces, placing wire between the pieces to allow expansion, then placing it back in Luke's skull.
Before the surgery, Luke did not speak. He didn't even babble, Sarah said. Almost immediately after the surgery, Luke began saying words. Today, he is an active, bright-eyed toddler who speaks clearly in sentences.
When Luke was born, July 16, 1999, in Forum Health Trumbull Memorial Hospital, the Laukharts had no warning of the terror, frustration and heartache that was to come.
Despite a rough pregnancy that Sarah says was caused by stress and illness, Luke seemed normal when he was born. With three other healthy children, Aaron, Madison and Rachel, now 11, 8 and 7, there was no reason to think anything was wrong.
Symptoms: For the first six months, Luke's only obvious problem was that he was lethargic, his mother said. However, at about 8 months, it became apparent he was in extreme pain. From the age of 1 to the time of his surgery, the pain intensified.
"He banged his head on the wall and floor and on whoever was holding him. He screamed and flailed and writhed in pain. He vomited every day, sometime several times," she said.
"It was the worst [suffering] I've every seen," said Sarah, a licensed practical nurse, "and I've seen people die of cancer and AIDS."
The Laukharts took Luke to area hospital emergency rooms trying to get him help. Luke had numerous MRIs and CAT scans and X-rays, but nothing definitive was found.
"I kept telling them he had pressure on his brain, but they didn't believe me. They thought he was having migraine headaches," Sarah said.
The Laukharts visited 20 doctors, including neurosurgeons in Cleveland and Akron and St. Louis, Mo., but had no success in getting a diagnosis and treatment.
Meanwhile, Luke's pain and condition worsened. He was having difficulty breathing while he was sleeping and was convulsing.
The last six months before Luke's surgery, Sarah said they sat with him in a recliner while he slept because being upright seemed to cause less pain.
"I slept between the screams," she said.
Doctor's support: She said the one thing that had kept her going was the support of Dr. Douglas Moses at Forum Health Tod Children's Hospital.
"Dr. Moses stuck with me. He researched and researched. He was phenomenal. If it were not for him, I wouldn't have had the strength to keep searching. I would have thought I was going insane," she said.
"What I did," said Dr. Moses, a member of the Division of Diagnostic Referrals at Tod Hospital, was "foster her persistence. I've learned to pay attention to a mother's instinct, particularly when they are persistent."
Luke is immeasurably better now, but the family's emotional trauma has not yet healed.
All the siblings suffered depression and are not certain the bad times are over, Sarah said.
Recently, Luke was crying and screaming because his stomach hurt.
"Is he going to die?" his sister Madison wanted to know.
Sarah said the main reason she tells Luke's story is to get the message out to others who might need help like she did.
She believes Luke's experience has already saved another child's life in Ohio. Through an Internet support group, Sarah became acquainted with Kaci King of Ridgeway, near Marion and Findlay.
King's son, Austin, had the same symptoms, and she had the same problem finding a doctor who could help.
Sarah directed her to Dr. Carson, and Kaci took Austin to Baltimore on Dec. 14, 2001.
How bad it got: Austin's surgery was planned for sometime early in 2002, but when he returned home from the examination, he stopped eating and drinking.
Kaci called Dr. Carson and told him she was afraid Austin was going to die. Dr. Carson worked him in on an emergency basis and performed the surgery Dec. 21.
"It's really a miracle. Austin is eating normally. He's a whole new child. We were blessed to find Dr. Carson," Kaci said.
"We're trying to get the knowledge out. There was a 7-year-old in New Jersey with craniosynostosis who was misdiagnosed with autism. We're wondering how many more people are out there who have been misdiagnosed," Sarah said.
This week, Sarah and Kaci are to meet for the first time, and also reunite with Dr. Carson. The doctor is to speak at 7:30 p.m. Wednesday at Youngstown State University's Kilcawley Center Chestnut Room as part of the Skeggs Lecture Series.
alcorn@vindy.com