New Straits Times (Malaysia)
May 10, 2001
Siblings need money for surgery
Two young brothers, suffering from Craniosynostosis, are in an urgent need of a total RM15,000 for a cranio-facial operation in Australia next month.
James Goh, six, and his younger brother, Jason, one, are suffering from a condition where all the sutures (joints) of their skulls are fused together.
Their fused skulls are retarding the growth of their brains.
Penang General Hospital plastic surgeon Dr Lim Lay Hooi said the condition if left untreated, would lead to blindness, paralysis and even death.
Meanwhile, the South Australian Government has agreed to pay towards the boys’ surgeries at the Australian Cranio-Facial Unit at the Women’s and Children’s Hospital in Adelaide.
The sponsor has also agreed to pay for food and accommodation for the brothers and one escort.
However, travel expenses to and from Adelaide and any other expenses have to be borne by the boys’ parents and these are beyond their means.
Concerned at the siblings’ plight, the Rotary Club of Penang has started a donation drive for the boys and their escorts.
The Toronto Sun
May 14, 2001
Rock Fest to Aid Brave Little Girl
By Carlo Corbo
There’s only one word to describe Peter Falconeri and Angela, his ailing five-year-old daughter—courageous.
When she was just one, Angela was diagnosed with craniosynostosis, which occurs when the skull’s plates are prematurely fused and don’t give the brain space to develop. When Angela was 15 months old she underwent surgery to correct the problem.
“It was terrifying. It was horrible. I was worried,” said Falconeri. As a result of her previous condition, her brain development was less than normal and some neurological connections were not formed which severely affected her speech, language and motor skills.
“She requires constant care,” said Falconeri. “She needs to be changed about seven times a day.”
Angela is not able to feed herself and is still in diapers.
“She’s my little angel,” said Falconeri.
He has had to quit a successful career in the information technology sector to take care of Angela full time.
And he’s raising her as a single dad.
Falconeri has organized a rock festival to be held at the Annandale Golf and Curling Club in Ajax at 9 p.m. on May 26 to raise money for the much-needed treatments. Goddo, Harem Scarem, Brian Vollmer of Helix, Santers and The Kings are scheduled to appear.
Falconeri is placing some hope on two new treatments that could help, but they are still experimental so OHIP does not cover the costs.
The Boston Herald
June 2, 2001
Genesis Fund; Happy and healthy, Katie’s progress a ‘success story’
By Steve Rauscher
It’s not every 8-year-old who gets to meet the president.
But in April, Katie Brackett of South Hampton, N.H., found herself standing on the White House lawn, shaking hands with President Bush and his wife, Laura.
Katie was born with craniosynostosis, which caused a pair of plates in her skull to grow together.
Shortly after her birth, she was referred to the National Birth Defects Center in Waltham, whose doctors diagnosed Katie and assembled the team of surgeons who reshaped the plates in Katie’s skull during a pair of surgeries in the months before her second birthday.
Six years later, Katie is healthy and happy. She and her parents are involved with the Children’s Miracle Network, a charity organization that selected Katie to be New Hampshire’s champion ambassador and sent the second-grader and her parents on an all-expenses-paid trip to Washington, D.C., where she met the president and the first lady.
“Katie’s just such a success story,” said her father, Bob Brackett. “It was great.”
The Bracketts got involved with the Children’s Miracle Network through the work of the Genesis Fund, a nonprofit group that raises money for the treatment of children with birth defects.
But more than that, said Katie’s mom, Dawn Brackett, the Genesis Fund has provided the Bracketts aid and advice through each stage of Katie’s treatment.
Now, Katie only needs yearly checkups to make sure that her skull continues to grow normally.
“When she gets to be 13, she may require another surgery,” said Dawn Brackett. “But it won’t be as involved as when she was younger. It’s pretty much just cosmetic now.”
Evening Times (Glasgow)
June 2, 2001
Brave Shane in King-size role
A YOUNG Elvis fan who has overcome serious illness will take centre stage tonight when he impersonates his hero in a Glasgow show.
Seven-year-old Shane Ferguson, of Alexandria, Dunbartonshire, was born with a rare disease which affects the bones of his skull. He has already been through a series of intricate operations and has more to come.
But tonight he will put his problems behind him to become the star attraction at the Glasgow Pavilion where he will perform the King’s hit Blue Suede Shoes.
The Christie Park school pupil—whose hearing, eyesight and balance have been affected by the disease craniosynostosis—will sing in the Up the Watter show being staged by people from Millport, on the Firth of Clyde’s Cumbrae, and is directed by his granddad Tony West.
“He’s really excited,” said Shane’s mum Charlotte. “He thinks he looks like Elvis when he’s got his costume on and his mates think it’s fantastic.
“I feel very proud of him after what he’s been through.”
Shane added: “I like Elvis because my granddad’s got his video. I can do his legs and sound like him.”
The Post-Standard (Syracuse, NY)
July 29, 2001
A Test of Faith: Liverpool Family Doing Well After Infant Undergoes Surgery
to Correct Craniosynostosis
By Nancy Buczek
Brett LaCourse of Clay remembers thinking there was something odd about his infant son’s head when he and his wife, Carrie, brought Noah home from Crouse Hospital.
“I remember rocking him upstairs and always feeling that ridge and wondering, “What is it?”’ LaCourse said.
When Noah was 2 months old, they found out he had craniosynostosis, a rare condition in which the fibrous joints between the skull bones fuse together prematurely, restricting growth and in some cases causing pressure on the brain.
Once thought to be solely a cosmetic condition, research suggests that if it is not corrected, craniosynostosis can lead to headaches, eye problems, or behavioral and developmental problems. “There’s no way to know if your kid is going to be one of the kids to have problems,” said Dr. Jeffrey Winfield, a pediatric neurosurgeon affiliated with Crouse Hospital.
Craniosynostosis affects one out of every 1,000 children. It can cause deformities of the skull and face and hamper development of the brain. Depending on which sutures (fibrous joints) in the skull fuse together, babies’ heads can grow exceptionally long and thin with a protruding forehead or their faces can become asymmetrical with a drooping eye or nose. Doctors aren’t sure what causes it.
The condition can be corrected by surgery in which doctors remove the top of the skull and reshape the bones through a series of cuts.
“You’ve basically taken the entire top of the skull off. When you put everything back, it’s round,” Winfield said.
Winfield, an adult and pediatric neurosurgeon, said he does about eight to 10 craniosynostosis procedures annually at Crouse Hospital. He operated on Noah in February 2000.
Dr. Satish Krishna-Murthy, also a pediatric neurosurgeon, offers the same procedure at University Hospital and performs about six craniosynostosis procedures a year, said Darryl Geddes, a hospital spokesman.
In Noah’s case, his sagittal suture, which runs from the forehead to the back of the head, fused, causing his skull to push out at the front and back of his head. His condition is called sagittal synostosis.
At Noah’s two-week measurements after his birth in November 1999, pediatrician Dr. James Greenwald noticed that Noah’s head seemed abnormally large for his age.
When Noah was 2 months old, a radiologist diagnosed craniosynostosis from a CAT scan of Noah’s head, Greenwald said.
Brett and Carrie LaCourse had never heard of craniosynostosis, so they looked it up on the Internet. The first thing they saw was a page for a parent support group.
“I just started sobbing,” Carrie said.
Web sites showed pictures of children with misshapen heads and lopsided faces. The LaCourses became scared. They weighed the idea of corrective surgery.
“Would Noah, when he’s 15, say, “Why didn’t you do something when you could have?”’ Carrie wondered.
Brett and Carrie had always gone to church and relied on their faith, but the days leading up to the surgery were tough, they said.
“It really tested our faith,” Brett said.
Prayer chains were started across the country on Noah’s behalf and hundreds of people called the LaCourse home to tell them their church was praying .
“God’s in control and he’ll protect him,” Brett remembers thinking.
The one thing they did have control over was the blood used during the surgery. About a week before the operation, Brett donated his blood.
“It was one of the few things we could do,” he said.
The surgery took about four hours. By midnight, about 12 hours after the surgery was complete, one of Noah’s eyes had swelled shut and the other was just a slit.
“He didn’t look like Noah, because of the head wrap and the slit eyes,” Brett said.
The next day Noah’s eyes were swollen shut and his entire head was swollen.
“That was the most horrible time. You couldn’t tell when he was awake and when he was asleep,” Carrie said. “I just felt so sorry for him.”
But then things started to turn around two days after the surgery. That evening he could open both eyes. On the third day, he was ready to go home.
“He recovered so quickly. It was just amazing,” Carrie said.
When Winfield removed the bandages, Noah’s head was perfect.
“I remember thinking, “Wow, his head is perfectly round,” Carrie said.
Noah’s sister, Allie, knew her brother was having an operation and was eager to tell people about it, her parents said.
“She told everyone he’s getting a new head,” Carrie said, laughing.
There is a faint white scar that runs ear to ear across the top of Noah’s head, but it can only be seen if his fine blond hair is pushed aside.
After the operation, Brett said he worried about how careful they needed to be with Noah. Several weeks after the procedure, Noah banged his forehead five consecutive times on the coffee table reaching for a ball under it. Brett realized he was pretty tough.
“I remember thinking he’s going to be OK,” he said.
As they sat in the living room of their home last month , Brett and Carrie watched Noah, now 1 1/2 , play with Allie, 4.
“It’s surreal what we went through,” Carrie said.
Types of craniosynostosis
There are four types of craniosynostosis, depending on which suture in the skull fuses together.
Sagittal: If the sagittal suture, which runs from the forehead to the back of the head, fuses together, the skull pushes out at the front and back of the head. It’s the most common form of craniosynostosis.
Metopic: If the metopic suture, which runs vertically down the middle of the forehead, fuses, the skull grows in a triangular shape with a pointed forehead and protrusion at the back of the skull.
Coronal: If one of the coronal sutures, which run down the sides of the skull near the ears, fuses, the forehead flattens, the eye socket on the side of the closed suture becomes elevated, the nose is deviated and the skull is slanted. If both coronal sutures fuse, the skull is shortened.
Lambdoid: The lambdoid suture runs across the sides of the head toward the back. If one side fuses, the baby will have a flattening of the back of the head on the side of the fused suture. The ear on the affected side may also shift forward and deformities typical of coronal craniosynostosis may also occur.
UK Newsquest Regional Press—This is Oxfordshire
August 31, 2001
Families celebrate unit’s birthday
By Roseena Parveen
More than 200 families from across Britain gathered in Oxford to celebrate the 21st anniversary of a pioneering medical unit.
Among the guests was four-year-old Robbie Boyd, from Elizabeth Drive, Wantage, pictured with Sue Greenwood, a craniofacial clinical nurse specialist. The craniofacial unit, based at the Radcliffe Infirmary, in Woodstock Road, Oxford, treats children and infants with skull abnormalities.
The patients, sometimes as young as a few months old, suffer from craniosynostosis, which means growth points in the skull do not develop properly and the brain is slowly crushed.
Former and current patients, and their families, brought picnics and joined hospital staff to commemorate the landmark.
Robbie’s mother, Chris Boyd, said: “There used to be a ridge of bone along the top of his head and to start off with we didn’t know what was wrong with him.
“It was such a relief to know it could be treated.”
UK Newsquest Regional Press: This is Oxfordshire
September 13, 2001
Patients mark 21 years of successful surgery
By Philip Seton-Anderson
The rare skull abnormality craniosynostosis affects one in 3,000 people. The operation to cure it is called fronto-orbital advancement and remodelling.
It sounds complicated but one eminent surgeon described the procedure as “a bit like carpentry,” the only difference being that the material being cut and bent into shape is not wood but an infant’s skull.
It sounds barbaric. It’s anything but. This kind of surgery—which celebrated its 21st anniversary in Oxford last week—marks the difference between a child leading a normal life or growing up with serious learning disabilities. The growth points in sufferers’ skulls fail to develop properly, which leads to the brain being slowly crushed as it grows in the confined space.
This can have devastating effects including severe head and facial deformities and brain damage.
Sue Greenwood, a specialist nurse at the Craniofacial Unit, based at Oxford’s Radcliffe Infirmary, said: “At best it can mean the difference between the child getting Ds instead of As at GCSE.
“At worst it can create problems with hearing, speaking and walking. The children can be mentally retarded, need to be educated at a specialist school and depend on social workers for the rest of their lives.”
During the operation, sections of skull, normally the forehead and the top of the head, are cut out and melon-shaped slices are trimmed from it.
They are then bent and fitted back in such a way as to allow the brain to grow properly.
The operations can make the difference between babies growing up with serious learning disabilities or leading entirely normal lives. The unit treats about 100 infants a year.
As recently as the 1970s craniosynostosis was little understood, but pioneering work by the French surgeon, Mr Paul Tessier, proved that it was treatable and, by 1980, specialist units had been set up at the Radcliffe Infirmary, in Woodstock Road, and at Birmingham Children’s Hospital.
A further two were later built in Liverpool and London.
Since then, more than 1,500 infants have come to the Radcliffe Infirmary for treatment.
Mr Steven Wall, surgeon and director of the unit, said the operation is performed between the ages of six and 12 months but in ten per cent of cases, patients need to be re-operated on, sometimes as many as five times before their 18th birthday.
Before the creation of the new units in 1980, surgery was much more rudimentary but new equipment and anaesthetists have meant that larger sections of bone can be moved around and replaced more successfully than before.
Patients who have benefited from the treatment at the Radcliffe Infirmary and their families joined staff at the Dragon School, in Bardwell Road, Oxford, on Thursday to commemorate the 21st anniversary landmark.
Among the guests was four-year-old Robbie Boyd, from Elizabeth Drive, Wantage.
Robbie is an ongoing patient of the unit and has had two operations. One was in December, 1997, and the second in March this year.
Shortly after his birth, his mother, Chris Boyd, sought medical advice about an unusual ridge of bone that ran along the top of Robbie’s head.
She said: At the start we didn’t know what was wrong . The ridge was starting to get longer, front and back, and no-one knew what to do about it.
“Then we were referred to Mr Wall and he knew what was going on and how to sort it out. It was a tremendous relief.
“Robbie was very, very low after the operations. His face was very swollen and he couldn’t see for five days, but although we can’t be sure, hopefully, he will be able to have a normal life now. “
Mr Wall down-plays his role in the process and stresses the surgery is a group effort with the other 15 members of his surgical team.
He says: “I think every branch of medicine gives immense satisfaction. I don’t get more than anyone else, but working with children with very good back up and support is very satisfying.”
But men such as Mr Wall play a huge part in transforming hundreds of lives.
The deceptively simple operation, which nursing staff liken to making a jigsaw puzzle with someone’s skull, has given hundreds of people the chance to enjoy their lives to the full.
Few things can be more satisfying than that.
UK Newsquest Regional Press: This is Brighton and Hove
September 21, 2001
Parents’ anguish at rare condition.
By Siobhan Ryan
When he was born, Jacob Hill’s parents knew there was something wrong with him but couldn’t work out what it was. As the youngster reached a few months old, Sarah and Mark Hill noticed their child’s head was an unusual shape, protruding at the front and narrowing behind to create a shape like a cycle helmet.
Jacob was referred to Royal Alexandra Hospital for Sick Children in Brighton where he was X-rayed and the results sent to a specialist at Great Ormond Street Hospital in London. He was diagnosed with the rare condition, craniosynostosis.
Mrs Hill, 33, from North Lane, Portslade, said: “The condition is still quite rare and there are differences of opinion in the medical world about surgery for those children like Jacob who are not badly affected.
“If it was simply a cosmetic thing then we would not consider any surgery but there is the risk he could suffer some brain damage if we don’t. It would be like a time bomb waiting to go off. Ultimately I think surgery is going to be inevitable.”
About one in 8,000 children is born with a form of the condition, where one or more of the seams of the skull, known as sutures, have fused while the baby is still in the womb. As the skull cannot expand properly to allow for the rapid brain growth which takes place in early years, extra growth often occurs in another area, accentuating the abnormal skull shape. In some forms of the condition, children can experience other abnormalities such as webbing of the fingers and toes and an inability to breathe through the nose.
Jacob, now two, is a happy child who is luckier than most sufferers as he has a relatively mild form of the condition but there is a risk he could be damaged by increased pressure on the brain and skull.
Mr and Mrs Hill will be meeting with Jacob’s consultant next month to talk about the possibility of surgery. Jacob has been referred to the speech and language therapy unit at the McKeith Centre in Brighton and will be closely monitored during the next few years.
Mrs Hill, who works for Seeboard, said she had never heard of the condition until Jacob was diagnosed. The lack of information about the conditions made help from Headlines, a craniofacial support group, invaluable.
She said: “We were luckier than most people as we knew a doctor whose niece had just been diagnosed but it wasn’t until we contacted the support group that we found out everything.
“Most children require surgery at some stage and as soon as you are told your child will require neuro-treatment you think of brain surgery and brain damage but this is not a condition which has to be all doom and gloom.
“This is why the support group is so important. “It provides advice and information for families from people who have been there and is providing information for GPs.”
Mrs Hill and her work colleagues have helped raise more than GBP 1,100 for the group. The organisation can be contacted on its website at www.headlines.org.uk.
The Evening Standard (London)
December 12, 2001
Bravery award for a young fighter
By Adam Blenford
A FOUR-YEAR-OLD girl born with a rare bone condition has been honoured as one of Britain’s bravest children after undergoing major surgery that saved her life.
Megan Coote, who lives in Newbury, will take centre stage this afternoon when she is handed an award for her courage at a star-studded ceremony at Westminster Abbey.
Celebrities including Michael Parkinson, Dannii Minogue, Joan Collins and Sol Campbell will look on as Cherie Booth presents 11 children with the Woman’s Own Children of Courage awards in recognition of their bravery in facing disability, illness or accidents. Megan, who was born with the bones in her skull fused together, would have died from massive brain damage without a series of complex operations. She was saved after surgeons altered the shape of her skull to give her brain room to grow.
She was nominated by readers of Woman’s Own after an article about her illness, a rare condition called craniosynostosis, appeared in the magazine.
Her father, Peter Coote, is a trustee of Headlines, a charity that works to raise awareness of the condition. He dedicated Megan’s award to every child suffering from craniosynostosis.
He said: “I can honestly say there are a lot of kids that deserve this award, but someone had to have it.
It’s really an award for them all.”
Celebrations began yesterday when the winners were presented with goody bags from Harrods and were introduced to the Prince of Wales at a central London reception. They were set to continue this morning with a visit to Downing Street to meet Prime Minister Tony Blair before the awards ceremony at Westminster Abbey. A long day will end with a meal at the House of Lords.
“Megan sort of knows what is going on,” Mr Coote said yesterday.
“She just knows that there is a lot of fun to be had, and has been practising her curtsy for the Prince of Wales.”
The editor of Woman’s Own, Terry Tavner, said: “I don’t call these children winners. They are ambassadors for all children. I would like these awards not to be necessary, but as long as children are overcoming adversity they are utterly valid.
“This is the 28th year of the awards and it is a huge honour to recognise the achievements of this year’s children. Each one of them has brought pride and honour to their families and their communities.”
Manchester Evening News
February 6, 2002
Chance of lifetime
By Helen Tither
FIVE-YEAR-OLD Michael Weir has spent most of his life in and out of hospital. Michael, of Ardwick, Manchester, was born with craniosynostosis—or Apert Syndrome—a rare disabling disease which affects only one in 160,000 people.
He had his first operation when he was only four months old. He requires round-the-clock care from parents Ivy, 43, and Andrew, 39, and is due back in hospital next year for yet another operation.
As his parents devote all their time and money to Michael’s welfare, he rarely leaves home and has never been on holiday. Now he has been offered the chance of a lifetime—a trip to America.
The holiday, a week in Myrtle Beach, South Carolina, has been organised by a Web-based support group for parents of children suffering from Apert Syndrome.
Ivy is delighted. She said: “This invitation is a once in a lifetime opportunity. The best thing about it is that Michael would be able to meet other children who suffer from the same condition.”
For the past five years Ivy and Andrew have slept on a rota to maintain 24-hour care for Michael. It has meant the couple, who have 10 other children aged from four to 24, have had to give up their jobs.
This has made it a struggle to raise the money for the holiday, set for June.
“I pray to God every day that we can take him,” said Ivy. “We’ve been looking into the cheapest flights and so on but it still works out at more than we can afford.”
March 1, 2002
My Shy Brain Op Girl is Now a Wee Tom-Boy; Brave Tot Wins Battle for Life
By Jenny Morrison
A BABY girl born with a crippling skull deformity has beaten the odds to blossom into a beautiful toddler.
Proud parents Heather and Craig McCann were shattered when doctors discovered her skull was not forming properly.
She was immediately sent to the Royal Hospital for Sick Children in Edinburgh, where she was diagnosed with Cranio Synostosis.
Heather and Craig, of Mid Calder, West Lothian, were told the rare condition causes the soft bone on a baby’s head to fuse prematurely.
Doctors warned that as Kirstyn’s brain continued to grow the skull would be unable to properly expand and she could be left permanently disabled.
The devastated couple were told Kirstyn’s only chance of living a normal life was if she underwent a life-threatening operation to break open her skull to allow her brain to grow properly.
And five months on they are celebrating after brave Kirstyn was given a clean bill of health.
Proud Heather, 29, said: “She has gone from being a quiet, clingy, shy little girl into a real wee tom-boy who is full of fun and adventure. She is so beautiful.
“We were both completely devastated when we first heard Kirstyn was ill. We didn’t know anything was wrong until we took her for her six-week check-up. After that it was hospital appointment after hospital appointment before the operation finally took place.
“Thankfully, she was strong and now I have been told that she is progressing well and doctors say there’s no sign of any permanent damage. Our only worry now is that she could need the operation again before she’s three. But the doctors say she’s doing well and hopefully it won’t be necessary.”
Heather and Craig, who also have two other children, Laura, four, and Martin, 20 weeks, paid tribute to the hospital staff who helped Kirstyn.
They have now launched a fundraising campaign to raise money to help buy a specialist shower trolley to help nursing staff wash special needs children.
Heather added: “All the staff at the Sick Kids were fantastic and we just wanted to do something to say thanks.
“Everything was so personal. The doctors knew everything about Kirstyn, her condition and what medication she was on without even picking up a chart. The follow-up from the surgeons was just excellent. They were all fantastic. Craig and I felt so helpless.
“We wanted to go through the pain she was feeling and not see her go through it. But the doctors waited until she was physically strong enough to take the surgery and now we know it was all worth it.”
May 30, 2002
Surgeons correct odd-shaped head
By Michael B. Davie
At first, Kathy and Rob Hehl thought there was nothing seriously wrong with their newborn son Patrick’s misshapen head.
The Waterloo couple assumed his bulbous forehead and protruding rear skull “bump” were temporary conditions that would correct themselves over time.
They didn’t realize he had sagittal synostosis, also known as craniosynostosis, a condition in which the soft spot at the top of a baby’s head closes too quickly and restricts skull growth. In Patrick’s case, the condition narrowed his skull while elongating it from front to back. “We always thought he had an odd-shaped head—but we were naive and thought it was just from a tough delivery and that his head shape would correct itself,” Kathy Hehl recalls of her son’s July 1997 birth.
Hehl, 37, notes that when his hair grew, “the bumps were less obvious,” and the couple became accustomed to the shape.
But when Patrick was 3, a gynecologist acquaintance met the boy and immediately suggested he had sagittal synostosis.
“I got on the Internet and found pictures of a lot of children with heads shaped just like Patrick’s,” Hehl recalls. “I was pretty distraught. I didn’t even know this condition existed. It was a complete shock, a revelation to learn about a condition that we’d missed and our friends and family and even our family doctor had missed.”
In November 2000, Patrick was diagnosed at the Hospital for Sick Children with a mild form of sagittal synostosis. He underwent surgery last February to correct the deformity, which presented no risk of brain damage or ill health.
Rob Hehl, 37, remembers their anxiety as their 4-year-old son went off to surgery, “but the main feeling we had was one of extreme confidence in the ability of the doctor to correct this condition.”
Dr. Christopher Forrest, medical director at the Hospital for Sick Children’s Centre for Craniofacial Care and Research, performed the eight-hour operation and follow-up treatments to correct a post-operative infection. He calls Patrick “a very brave little boy.”
“This condition only occurs in one in 2,000 births and it can range from moderate to severe,” says Forrest, “and although Patrick was diagnosed fairly late, a lot of parents do tend to think their children will grow out of it—but they won’t.”
Patrick had the most common type of synostosis “with no significant effect on brain development,” adds Forrest, who performs 50 or more such operations every year. “However, children with this condition can look very different and it can affect their self confidence and self esteem so it should be corrected.
“There’s no question this can have an effect on their potential, on their personality, on their confidence level and their ability to succeed in life and so I think what we’ve done with Patrick is ... sort of tipped everything in his favour now.
Forrest performed extensive removal, recontouring and replacement of the bones of the skull, successfully restoring the young boy’s head to a normal shape. Sick Kids is the only pediatric centre in Ontario that performs this type of cranial reshaping.
“The Hospital for Sick Children is one of the finest centres in cranio-facial disorders in the world. We draw on the expertise of 57 different people in over 20 different medical and health-care specialties and I think that’s the true strength of our program and it’s a very rewarding experience to be part of that.”
Patrick’s dad says that after a six-week recovery period, he was back enjoying the swingset and teeter-totter in their backyard with his 8-year-old sister, Frances.
“To look at our son now, you’d never know there was ever any problem with the shape of his skull.
“There’s really no limitations at all to the normal childhood activities Patrick can enjoy,” he adds.
“The operation has made a real difference in Patrick’s appearance. It’s absolutely amazing.”
His mother is pleased he’ll be spared the teasing that might have followed had his condition not been corrected.
“He looks completely normal now. We’re so glad our son had this operation.”
October 1, 2002
Shaping Up; Kernersville Parents Say Daughter Looks ‘Really Good’ After
Successful Surgery On Her Skull
By Janice Gaston
On March 7, Kadyn Grace Hedgecock’s small body lay on a table in a steamy-hot operating room at Wake Forest University Baptist Medical Center. Her parents, Scott and Cindi Hedgecock of Kernersville, sat, anxious, in a waiting room as doctors prepared to slice into their baby’s skull.
Kadyn was one week short of 6 months old.
When she was born, her mother noticed that Kadyn’s head seemed to have an odd shape, long and narrow instead of round. But she figured that it would probably right itself over time. At a Christmas gathering, when Kadyn was 3 months old, a relative who is a pediatric neonatologist took a look at Kadyn and asked her parents, “Have you had her head checked?”
When they did, they found that a suture, a spot where the bones of the skull join, had closed prematurely. Kadyn’s head could grow front to back but not side to side. Without intervention, she would be left with a misshapen head and would be at risk for developmental delays and impaired speech and movement.
The condition, called craniosynostosis, occurs in one in about 1,500 births. In Kadyn’s case, the sagittal suture had closed, resulting in the most common type of craniosynostosis, scaphocephaly.
The Hedgecocks knew they had to do something.
For weeks, Cindi Hedgecock spent her lunch hours on the Internet, searching for a solution. She works at Aetna U.S. Health Care. Her husband is a strawberry farmer.
For many years, the most common treatment for Kadyn’s condition has been a surgery known as cranial vault reconstruction. It’s significant surgery—four hours in the operating room, four to five days in the hospital, blood transfusions—and “a big deal for a baby this size,” Dr. Lisa David said.
David is a plastic surgeon and an assistant professor in the department of plastic and reconstructive surgery at the medical center.
The Hedgecocks heard about another solution—spring-mediated cranioplasty.
In 1997, a Swedish doctor, Claus Lauritzen, developed a procedure in which a small strip of the skull is removed and stainless-steel springs are inserted in the opening to hold the sections of bone apart and slowly stretch the space while new bone grows.
With this procedure, children usually spend just two days in the hospital, seldom need blood transfusions and recover faster.
David spent six months in Sweden, studying Lauritzen’s technique. In April of last year, she started to perform the procedure at Baptist, the only hospital in the country that offers it.
The Hedgecocks decided that spring-mediated cranioplasty was the best solution for Kadyn. But their insurance company balked. As they fought to get the procedure covered by insurance, Kadyn inched closer to the age limit for the procedure.
“No one does it before (the age of) 3 months because of the risk,” David said. “After 6 months, the bone is a lot harder to move. Six to 7 months is the top limit of when I like to do this.”
If Kadyn didn’t have the surgery in time, she would need the more-radical procedure, which costs roughly the same as spring-mediated cranioplasty.
The Hedgecocks were willing to pay for the $25,000 surgery themselves if they had to. They scheduled the operation. Insurance eventually covered the cost.
Early on the morning of March 7, doctors and nurses huddled around Kadyn’s still form, tenderly preparing her for the surgery. Someone cranked the thermostat to 80 degrees to keep the baby warm. Sure hands carefully lifted and turned her, positioning her so that she lay face down.
Dr. Steven Glazier, a pediatric neurosurgeon, swabbed her downy head with the antiseptic Betadine, soaking her light brown hair.
“We don’t shave the head,” he said. “There’s no increase in infection, and it’s easier for the child and the parents.” He cleaned the brownish liquid off her face and stapled a sterile drape to the sides of her head, covering everything but the orange-brown dome of her skull. He marked the incision, a lazy “S.”
Small spots of blood blossomed as he slid a needle into several spots on Kadyn’s head. “It’s a local anesthetic,” Glazier said. “It helps with post-op pain, and helps minimize blood loss.”
After opening the skin, he cut through bone, removing a small strip—the prematurely closed suture. David stood nearby, shaping the stainless steel springs into shallow V’s. Carefully, she placed one at the top of the gap and another at the bottom, overlapping them. She and Glazier sewed the springs into place.
“Now, we’ll begin to close up,” Glazier said.
In the waiting room, the Hedgecocks got the news: “She’s in recovery, crying. She did great.”
Cindi Hedgecock took a deep breath, then let it out.
Kadyn went home two days after her surgery. Two days after that, she was off her pain medication and her parents could already see a difference in the shape of her head.
On Sept. 18, Scott and Cindi Hedgecock once again sat in a waiting room minutes before their daughter would undergo surgery. Kadyn, who had celebrated her first birthday the week before, toddled around in a tiny hospital gown decorated with teddy bears.
This time, her mother said, “I’m not half as nervous.” Nurse anesthetist Pam Wofford arrived to take Kadyn to the OR.
“All right, Boo-Boo,” her mother said, and stole one last kiss.
In the operating room, Glazier and David worked together, exposing the edges of the springs imbedded in Kadyn’s skull. They teased and tugged at them. As the metal emerged, Glazier cut through it with a loud snap. A few snaps later, the remains of the springs slid out.
Within hours of the surgery, Kadyn was back to her usual rambunctious self, her mother said. She ate an entire plate of green beans and jerked her IV out with her teeth.
Less than 24 hours later, she was home.
The Hedgecocks see a dramatic difference in the shape of Kadyn’s head.
“It looks good,” her mother said. “It looks really, really good. It’s not completely round, but nobody’s is.
“We’re very well satisfied with how it turned out.”
The Houston Chronicle
December 19, 2002
Focus: Cranial Defects; Reshaping Tiny Heads; New procedure allows surgery
on younger children
By Deborah Mann Lake
TWO HOUSTON DOCTORS have pioneered a less-invasive microscopic surgical technique to correct craniosynostosis, a birth defect that causes the plates in an infant’s skull to prematurely close.
The new procedure, which can be done at an earlier age than the traditional surgery, results in a smaller incision, less swelling, a shorter hospital stay and less blood loss.
The drawback is that it requires the patient to wear a molding helmet 23 hours a day for up to one year after the surgery.
“The traditional surgery works fine and you get good correction, but it’s very involved and traumatic for the child, and 60 to 75 percent wind up with transfusions,” said neurosurgeon Dr. James Baumgartner, assistant professor of pediatric surgery at the University of Texas Medical School at Houston. Baumgartner works with plastic surgeon Dr. John Teichgraeber, professor of pediatric surgery at UT-Houston, when performing the microscopic surgery.
“We want to offer both options to parents and let them decide,” Baumgartner said.
Craniosynostosis occurs in approximately one of every 5,000 newborns. The cranial sutures, the fibrous joints between the bones in the skull, close prematurely while the brain is rapidly growing. It can result in physical abnormality of the skull, mental retardation, seizures and blindness.
A misshapen head as the brain begins to bulge into the skull is the first indication, and the disorder is usually diagnosed within a month of birth.
The premature closure of the sagittal suture, the one that runs down the middle of the top of the head, is the most common and the one most easily corrected with the new procedure, Baumgartner said.
In the traditional surgery, the skin of the scalp and face must be pulled back, and the misshapen portions of the skull are removed. Absorbable plates and screws are inserted to hold the new shape in place.
The new procedure allows the surgeon to go through an incision that can be smaller than one inch. A 5-millimeter-wide trench is made along the suture and a small portion of the bone is then removed. The helmet keeps the bones in place as the brain grows.
“With the traditional surgery, you have to wait for the four- to six-month range because if you do it earlier, the bone there is not strong enough to maintain the head shape and will fall apart,” Baumgartner said. “The helmet allows us to do the surgery at an earlier age when the amount of correction is mild and so the amount of surgery is smaller.”
But the helmet is not for every patient. “It takes a pretty dedicated person to go through the helmet part,” Baumgartner said.
Mustofa and Stacey Khandokar, parents of 6-month-old Ethan, looked at both options before deciding on the less-invasive procedure.
“The little procedure has less impact on the child, less swelling. The appearance is more appealing,” Stacey Khandokar said.
The Khandokars saw a difference immediately after surgery on Oct. 29.
“You could tell the head wasn’t as pointy as it was before and you could feel the soft spot on his head,” Stacey Khandokar said.
Teichgraeber said Ethan was nearly 4 months old at the time of the surgery, making him the oldest patient for the UT doctors, who usually prefer infants younger than 3 months for the procedure.
“He was close to the edge, but since he was so small because he was premature, it was worth giving it a try,” Teichgraeber said. “Also, most of the abnormal growth was limited to the back third of the head and the forehead was not involved so we could do the less-invasive procedure and remove less bone.”
If the new procedure failed, the doctors said, the traditional surgery could still be done at a later date.
For Ethan, the helmet, made after a mold of his head was taken, is doing its job. The helmet is lined with a soft foam plastic and comes in two halves. The tension across where the halves meet is provided by rubber bands that are adjusted from two to four times a month. A helmet usually lasts from three to four months.
“The bones are shifting in the back and front. It’s been an immediate change. The only drawback to the helmet is hygiene. You have to keep it clean with rubbing alcohol or it will stink,” Khandokar said.
Baumgartner and Teichgraeber believe using the helmet even after the traditional surgery is important and can help avoid repeat operations. They are in the process of presenting a paper on how cranial molding through helmets shows clear-cut benefits.
“It’s the helmet that determines how well you do after surgery,” Teichgraeber said. “Basically you’re releasing everything during the surgery and leaving it to the brain to mold and get to a normal structure.”