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.
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.
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.
Jennifer and the Division of Neonatology at MCH
Big things come in small packages. Jodi and Ron Nebel realize this each time they look at their daughter, Jennifer Nicole Grace. When Jodi suffered kidney failure just 20 weeks into her pregnancy, her doctors knew little Jennifer was in trouble. Though they offered little hope for Jennifer’s future, the Nebels refused to give up, and an emergency Cesarean was performed. Jennifer, born at 23 weeks and weighing only 14 ounces, was then rushed to Miami Children’s Hospital. She is now a small but active 2-year-old.
An Unexpected Turn of Events
Jennifer’s dramatic early arrival into the world began after an ultrasound at 20 weeks showed that she was developing on target. Jodi, meanwhile, was slowly swelling and had serious pressure in her head. At a nurse’s recommendation, Jodi checked her blood pressure at a local pharmacy—it was incredibly high. Jodi was rushed to the hospital where she was diagnosed as being in toxic shock with her kidneys near failure. The doctors were concerned about Jodi’s life, and they soon learned that her baby was in trouble, too.
“The doctors said that even if Jennifer survived, she would probably live a vegetative life,” says Jodi. “But I knew God placed this little life in me for a reason. I couldn’t let her die!”
An Angel Unaware
The Nebels had only a few moments to make a difficult decision. Searching for a sign to go through with the Cesarean section delivery, Jodi called the hospital chaplain’s office. “As a Christian, I was calling for a minister or priest,” says Jodi, “but the only person available was a rabbi—it turned out God used him to give me my answer. He made me realize that the doctors and nurses were there to help deliver my baby. I knew this was the answer I needed.”
A Miracle in the Making
After performing the emergency C-section, the doctors took baby Jennifer to an incubator to be stabilized. The umbilical cord had wrapped four times around her neck, a sight the doctors had never seen, and the slow beating of Jennifer’s heart signaled that her heartbeat would stop unless quick action was taken.
Jennifer was transported to Miami Children’s Hospital’s Neonatal Intensive Care Unit, where F. Amed Soliz, MD, neonatologist and Head of the NICU; Pablo Valencia, MD, neonatologist; and their team of nurses immediately went to work saving Jennifer’s life.
“We’d never seen such a small, underweight baby,” says Dr. Soliz. “Fortunately, Miami Children’s has the staff and technology to care for this kind of delicate situation.”
At Miami Children’s, Jennifer had numerous tubes extending from her tiny body and underwent blood transfusions nearly every day. In addition, her eyes were fused together.
The doctors closely monitored her eyes, knowing they had a 24-hour window of time to operate. They performed emergency laser surgery at just the right moment, saving her sight.
Finally, after spending her first four months of life in a hospital, Jennifer went home at barely four pounds— two days before Christmas. Who could ask for a better Christmas present?
A Happy Ending
“We see Baby Nebel quite often,” says Dr. Soliz. “She looks so beautiful, smiling and trying to walk.”
“It was a blessing that Jennifer was transported to Miami Children’s,” says Jodi. “They saved her life.”
Jennifer is now a happy 2-year-old who loves to play and laugh with her 8-year-old brother, Kevin, and her purple dinosaur, Barney. After recuperating at home for 1 1/2 years, she’s been to the beach and to Mardi Gras at Disney World. She doesn’t slow down for one minute—she’s got too much living to do.
Bria and the Cancer Center at MCH
When Bria Brown sings her favorite song, "I'm a Survivor" from Destiny's Child, she infuses the lyrics with special feeling few 9-year-olds can summon. Bria gained this inspiration the hard way, having learned at a tender age just what it means to be a survivor.
Bria's story of survival began with a trip to the family doctor several years ago. Carol Brown, Bria's mother, asked the doctor to examine a hernia in the child's groin and also reported that Bria, then 6 years old, had been complaining of pain in her left leg and was limping slightly. The news that soon followed was something no parent should ever have to hear - Bria had cancer.
Bria was taken to the Cancer Center at Miami Children's Hospital, where her family learned she had an aggressive form of bone cancer, called osteosarcoma, in her left thigh. Though the family faced an uncertain future, the Browns refused to let fear dictate their lives. And with the care and compassion Bria and her family received at Miami Children's Hospital, today this energetic third grader is showing the world how to beat the odds.
Facing the Uncertain
Once Bria's cancer was detected, Ed and Carol Brown began the search for a pediatric cancer care program for their daughter. "Miami Children's was our first choice because it was highly recommended by our family and friends," says Carol. "We were so relieved when they took her immediately."
To more accurately diagnose and treat Bria's newfound disease, Ziad Khatib, MD, hematology and oncology specialist, and a team of physicians in the Cancer Center at Miami Children's proceeded with an MRI, biopsy and several other tests. Dr. Khatib determined that the cancer was a high-grade osteosarcoma, meaning that it was advancing rapidly and could possibly spread throughout Bria's body and into her lungs without prompt treatment.
Bravery in Battle
The Browns reviewed their care choices with the Cancer Center team and chose chemotherapy over the more aggressive form of treatment - amputation of the leg. Bria underwent surgery at Miami Children's to place a port in her chest to ease the chemotherapy sessions.
"Bria started her chemotherapy in June 2001," explains Dr. Khatib. "The treatment requires two to three days of hospitalization with each treatment, which she received every two to three weeks. We also saw her once or twice a week to check her blood count and tolerance of the chemotherapy. Each time she came in, we were impressed with her energy and upbeat attitude." Through it all - pain, nausea, hair loss and fatigue - Bria, her family and the medical staff of Miami Children's held fast to a positive outlook for the future. As her chemotherapy was showing signs of success, the cancerous portion of Bria's thighbone was replaced with a metal prosthesis that would "grow" with her, with periodic adjustments. And in the spring of 2002, she completed her therapy.
Delighting in Life
Bria's cancer has been in remission for more than a year thanks to the treatment she received at Miami Children's Cancer Center. Today she's just as active and energetic as ever. She's back at the North Dade Center for Modern Languages, playing basketball, riding her bike and serving on Miami Children's Hospital's Kids' Council to help other children who are battling cancer. "We're thankful that through it all we had the care and support offered at Miami Children's," Carol says. "From day one Bria fell in love with the hospital staff, and they fell in love with her. They treated my little girl like she was a queen."
Ryan and the Division of Neurosurgery at MCH
2004 began with a jolt for the Fuerst family of Palmetto Bay. Gregg and Trisha Fuerst were eager to learn the cause of their 4-year-old son Ryan’s regular headaches. But they were not prepared for the diagnosis that would follow.
In January, Ryan’s pediatrician referred the chatty and inquisitive preschooler to a neurologist to investigate the source of the headaches he had been experiencing on an almost nightly basis. Ryan underwent an MRI at Miami Children’s Hospital. Then came a call from Dr. John Ragheb, Director of the Division of Neurosurgery at Miami Children’s. This division receives referrals of challenging neurosurgical cases from throughout the country.
“Dr. Ragheb explained that Ryan had a rare condition. An arachnoid cyst was embedded at the center of his brain. The cyst was inhibiting the flow of spinal fluid within his brain, causing pressure to build dangerously,” recalled Trisha. She was told that Ryan would need to undergo surgery right away.
“This was such a traumatic moment, but somehow Dr. Ragheb made us feel from the very start that everything would be alright,” said Trisha. “Looking back, I’m not sure how we got through it. I think it was Dr. Ragheb’s manner and his confidence that he could help Ryan.”
Ryan benefited from a new minimally invasive surgical technique that enabled the team to remove the plum-size cyst without creating a large opening in Ryan’s skull. Instead, a tiny portal was made in the skull through which a three millimeter neurosurgical endoscope and miniature surgical tools were inserted. The cyst was punctured and collapsed through this small hole in Ryan’s scalp.
The Fuersts are delighted with the outcome. “Within minutes of emerging from surgery, Ryan was talking,” Trisha recalled. “We knew then that he was going to be fine.” Today, Ryan is a playful, enthusiastic preschooler who loves to talk and asks a million questions.
“We are so grateful. If it weren’t for this excellent team, we might have had to travel out of state for care. We received the best care available, right near home,” said Trisha.