Melanie and the Children's Brain Institute at MCH
“What should we do now?” Kim Lawrence implored her child’s doctor in Atlanta. The Leesburg, Georgia, mother was at the end of her rope after two and a half years of alternately trying every available medication to curb daughter Melanie’s relentless seizures. Little Melanie, then only 3, was seizing as often as 40 times per day and each would begin with a scream as the child anticipated the impending episode.
The Lawrence family was exhausted from the long battle to end Melanie’s seizures and fearful, knowing the unchecked neural malfunction was affecting her growth and development. “I told the doctor in Atlanta that I would sell my house and go anywhere in the world to help Melanie,” Kim recalled. “He said, ‘If I were you I would go see Dr. Michael Duchowny at Miami Children’s Hospital. ‘ ” Dr. Duchowny, Medical Director of Miami Children’s Brain Institute’s Comprehensive Epilepsy Center, is a neurologist and world-renowned expert in treating medically resistant epileptic seizures.
Within days of the Lawrences’ arrival in Miami, Dr. Duchowny and Dr. Nolan Altman, Chief of the Department of Radiology at Miami Children’s, succeeded in identifying the mysterious source of Melanie’s seizures through use of SPECT scans, a technology that few facilities employ. “We specialize in pinpointing the source of seizures that do not appear on MRI scans. Our greatest successes are those children who could not be helped at other facilities,” said Dr. Duchowny. Melanie is indeed one of Dr. Duchowny and the Brain Institute’s many success stories. After a May 2004 surgery performed by the hospital’s renowned neurosurgical team in which a significant portion of the child’s malfunctioning right frontal lobe was removed, Melanie, now 5, is a bright, confident kindergartner who loves to read.
In 2006, Melanie accompanied her friend Mason, also 5, to Miami Children’s Hospital, as he, too, required surgery to remove brain tissue that was causing epileptic seizures. Mason, the son of long-time friends of the Lawrence family, has known Melanie since his birth. When Mason’s seizures proved as intractable as Melanie’s, the Lawrences advised their friends to bring the child to Miami Children’s. After visiting Dr. Duchowny and undergoing surgery with the Brain Institute team in September 2006, Mason and Melanie are back at play in Georgia—a lifetime of seizures behind them at last.
Back to the top
Alexis and the Craniofacial Center at MCH
When asked what she wants to be when she grows up, Alexis Coello has a ready answer: doctor, lawyer, teacher and dolphin trainer. While that may seem like a lot of goals, nothing is too much for this outgoing girl. The reigning Homecoming Princess cheers for the Murray Park football team, is on the honor roll every year and plays soccer and basketball. One would never guess that the beautiful 9-year-old was born with a condition requiring six surgeries to repair.
A Mother’s Determination
One of the many children with craniofacial anomalies who are helped by the Craniofacial Center at Miami Children’s Hospital, Alexis was born with a bilateral cleft lip and cleft palate, meaning parts of her lip and the roof of her mouth did not join properly during fetal development. There is no known cause for this condition and, in most cases, it happens without warning.
“My pregnancy went like clockwork. Nothing was suspected,” says her mother, Helena Coello, MEd, RT (R), a Clinical Process Educator at a local hospital. “But when they wouldn’t let me see her, I knew something was wrong.”
Although Helena was assured the condition was correctable, the words did not reassure Alexis’ father, who abandoned the family. Broke and alone with two children, Helena faced the future with courage and determination.
“Many babies born with cleft lips and palates have problems feeding,” says Helena. “With the nurses’ and physicians’ help, I learned to maneuver Alexis’ bottle up and down to feed her.”
Alexis went home just five days later.
A Center for Caring
Alexis underwent her first surgery at 5 weeks old, and by the age of 2 had six surgeries to repair her cleft lip and palate. But surviving the surgeries wasn’t all that was required of Alexis.
“Among other things, children like Alexis often need extensive dental work and speech therapy. In addition, a geneticist is needed to rule out any other developmental problems,” explains Mislen Bauer, MD, Medical Director of the Craniofacial Center and pediatrician and geneticist on staff at Miami Children’s Hospital.
“In the past, families had to travel across town to visit various specialists, so we created the Craniofacial Center to provide multidisciplinary care in one place.”
Now, children are seen at least twice a year by a team of specialists including a dentist; plastic surgeon; social worker; pediatrician; speech pathologist; and an ear, nose and throat surgeon.
“Alexis was one of the first patients at the Craniofacial Center,” says Helena. “I was really grateful that there was somewhere I could turn for guidance and hope. At the center, there was a team of people to educate me and to reassure me that I was doing a good job caring for Alexis. It was such a relief!”
A Difference You Can See
Now, after three years of speech therapy and six surgeries, no one would suspect Alexis’ story of struggle and survival. But her mother will never forget.
“The progress was slow, but the results are amazing!” says Helena. “I am so grateful for the support I received from the Craniofacial Center and Miami Children’s Hospital.”
In an effort to help other families with children with craniofacial anomalies, Helena and Alexis are actively involved with the Children’s Craniofacial Association (CCFA) at Miami Children’s Hospital Foundation. Helena serves on the board, while Alexis offers the other children cheerful support.
Back to the top
Michael and the Congenital Heart Institute at MCH
When Brittany and Michael Madden drove their apparently healthy firstborn to Miami Children's Hospital for routine testing, they never dreamed that the trek would save his young life.
During Brittany's fifth month of pregnancy, a fetal specialist informed the expectant mother that something might be wrong with her baby's kidneys and advised her to have the child checked by a nephrologist when he turned 3 months old. After the birth, little Michael seemed the picture of health, raising doubts about the kidney health warning.
Nevertheless, the Naples, Florida, couple dutifully brought the child to Miami Children's for an evaluation once he achieved the 3-month milestone. Their responsiveness - and an astute doctor who detected a heart murmur during a routine vital sign exam - probably saved Michael's life. No sooner had the family returned home following the examination, than they received a call from the hospital asking them to return right away to consult a cardiologist.
What the Maddens learned from Dr. Richard Zakheim turned their world upside down. "We found out that Michael had several holes in his heart, and his aorta needed to be reconstructed. The doctors were amazed that he looked so good on the surface considering his very significant heart defects. He needed surgery right away. Without it, they were not sure how long he would survive," recalls Brittany. Over the next few years, Michael underwent multiple procedures at Miami Children's Hospital. The first involved the surgical repair of a coarctation of the aorta, a narrowing of the main blood vessel carrying oxygen-rich blood to the body. The surgery was performed by Dr. Redmond P. Burke, Chief of Cardiovascular Surgery at the Congenital Heart Institute at Miami Children's Hospital and Arnold Palmer Hospital for Children in Orlando.
"He told us that Michael's aorta was as narrow as a toothpick when it should have been the size of a pencil. He was impressed that Michael had managed to survive with such a constriction."
The next step for Michael was the repair of multiple holes of varying sizes in his heart, called ventricle septal defects. Some were repaired by Dr. Evan Zahn, Chief of Cardiology at the Congenital Heart Institute, utilizing an occlusion device that was then still pending FDA approval. The AMPLATZER occluder makes it possible for holes to be repaired using minimally invasive catheterization techniques. Michael's final procedure took place on February 14, 2006-Valentine's Day. In the future, the Maddens expect to celebrate this holiday with special feeling and with fond memories of the doctors who repaired Michael's ailing heart.
"Dr. Burke and Dr. Zahn fly all over the United States to perform what I call 'miracle work.' Their hands must be very gentle to be able to work on such small and fragile infants. They are truly experts in their field," said Brittany.
Back to the top