May 29th, 2016 · Leave a Comment
Just six months ago, every step for Amarachi Austin-Okoh was filled with pain. The 11-year-old from Nigeria had enough trouble walking. Things like running, playing tag or playing basketball seemed like a dream. But now they're things she can look forward to, thanks to a life-changing trip to Mayo Clinic.
Amarachi has a condition called Blount's disease. Her mother, Modesther Austin-Okoh, says the family discovered the condition with Amarachi was just two years old.
Todd Milbrandt, M.D., an orthopedic surgeon atÂ Mayo Clinic Children's Center, describes Blount's disease as "a failure of the growth plate to grow on the inside of the knee, specifically, the top part of the tibia." In Amarachi's case, her disease progressed to the point where she had severely bowed legs.
"We wish we could have seen her walk and be like other children," her mother says. "We were always crying for her."Â Read the rest of this entry »
March 4th, 2016 · Leave a Comment
Our daughter, Mallory, was born with several congenital defects known cloacal exstrophy (OEIS â€“ omphalocele, bladder exstrophy, imperforate anus and spinal defects) found in 1 and 400,000 live births. After Malloryâ€™s 20-week gestational ultrasound, we were referred to Mayo Clinic in Rochester, Minnesota, from Mayo Clinic Health System â€“ Red Cedar in Menomonie.
We instantly became patients of the Maternal Fetal Medicine team and were both closely monitored until birth. This monitoring involved several tests, ultrasounds and appointments. Mallory was born at 38 weeks' gestation at Mayo Clinic Hospital, Methodist Campus, on Oct. 19, 2014.
The defects identified at birth were more serious and complicated than originally predicted through prenatal monitoring. In the beginning, we wondered how these abnormalities were missed in the extensive prenatal monitoring. It was explained that Malloryâ€™s condition of OEIS is so rare that the Maternal Fetal Medicine team did not know to even look for that type of defect.
February 19th, 2016 · Leave a Comment
"There is something wrong" are words no expectant parent ever wants to hear. And for Ryan and Kathy Nielsen, they came just 20 weeks into Kathy's first pregnancy. The couple was eagerly awaiting the arrival of their child and had been busy getting their home ready. Then, doctors diagnosed their unborn son, Aaron, with congenital diaphragmatic hernia during Kathy's 20-week ultrasound. After the shock wore off, the couple began a search for answers that ultimately led them to Mayo Clinic's Rochester campus.
"We debated on a number of facilities after Aaron's diagnosis, but we ended up coming to Mayo, because they offered an ECMO (heart and lung machine) as part of his treatment if he were to need it," Kathy says. "The other medical facilities did not."Â Read the rest of this entry »
October 30th, 2015 · Leave a Comment
The circumstances around her birth, however, were not as serene.
At her 20-week ultrasound, Caitlin learned her baby's heart was not where it was supposed to be and that it had developed outside of the chest wall. The condition, called ectopia cordis, is "one of the, if not the, most rare congenital heart defects,â€ť according to Joseph Dearani, M.D., a Mayo Clinic pediatric cardiac surgeon.
â€śWe didnâ€™t have any idea that anything like that could happen," says Caitlin. "It was scary. The odds were stacked against her.â€ťÂ Read the rest of this entry »
Tags: Cardiac Surgery, Congenital Heart Defect, Dr Joseph Dearani, Ectopia Cordis, Mayo Clinic Children's Center, 3d printing, Cardiology, Dr Carl Rose, Dr Christopher Moir, Dr Jane Matsumoto, Obstetrics, Pediatrics, Radiology
October 22nd, 2015 · 1 Comment
But the slogan on Haonan Jiang's T-shirt, which readsÂ "Tough asÂ Nails," is a more accurate summation of his spirit, and the fight he and his family have been waging.
The 11-year-old from Beijing, China, prefers to be called "Jack." He is suffering from what is known as an anaplastic astrocytoma, a grade 3 malignant tumor, according to his doctors at Mayo Clinic. The typical survival rate after diagnosis is one to three years.
Jack's parents, Ben and Lili Jiang, had promised him a trip to see America when he finished primary school. But instead of sightseeing, their focus is now on Jack and doing anything possible to stop, or at least slow, his deteriorating and deadly condition. Read the rest of this entry »
August 31st, 2015 · 1 Comment
At 27 weeks into her pregnancy with twins, Amber Sylvester went to Mayo Clinic with her husband, Mike, for an ultrasound test and received news that no parent wants to hear. One of the babies was in trouble. She had enlarged kidneys, no amniotic fluid around her body, and fluid in her abdomen. She would likely not survive until birth. Even if she did survive, doctors said she would likely not live long enough to receive a transplant.
Amber remembers that appointment clearly. â€śThe tech asked me if my water broke,â€ť she says. â€śWhen I saw the concern on her face, I knew that something was not right. All I can remember is crying hysterically.â€ťÂ Read the rest of this entry »
June 26th, 2015 · Leave a Comment
As a pediatric cardiology fellow at Mayo Clinic, Dr. Brandon Lane Phillips cared for a number of children from Mongolia who had congenital heart defects. Before they went into surgery, he would take a photo of their hands next to his on a white piece of paper. He would do the same again after surgery and before they returned home.
The difference was striking. "In the pictures before heart surgery, you could clearly see a blue cast to their skin. After surgery, the blue was gone," he says. "That really hit home for me."
It made an impact because Dr. Phillips is not only a physician who specializes in pediatric cardiology, he's also been a pediatric cardiology patient.
"Many of the kids who came to us from Mongolia had the same heart defect I did: tetralogy of Fallot," he says. "They were often close to their teenage years and had never undergone surgery. These children were usually quite blue. They couldn't walk very far. It was a glimpse of what would have happened to me without the medical attention I received.Â Read the rest of this entry »
June 12th, 2015 · Leave a Comment
If Ty Wiberg, a 13-year-old from Chippewa Falls, Wisconsin, has one guiding principle in life, that might be the one.
The Chippewa Falls Middle School student has undergone 16 surgeries, walks with braces and uses a wheelchair for distance. Ty was born withÂ spina bifida, a spinal cord malformation. He also suffers from hydrocephalus, a buildup of fluid in the brain for which a tube-like shunt drains excess fluid. And he has limited sensation from the knees down, among other issues.
Not that any of that is slowing him down.
Ty mono-skis, distance races with his wheelchair, scuba dives, plays wheelchair basketball, swims and does karate. This past winter, he spent a week at a downhill ski camp in Colorado for kids with disabilities and injured veterans. This spring, he recently received his black belt in karate.Â Read the rest of this entry »
April 15th, 2015 · Leave a Comment
After an ultrasound at 32 weeks into her pregnancy, Anna Ryabova, along with her husband, Oleg Pecherskii, faced a grim prognosis for their unborn son.
"The doctors in Russia told us his kidneys were very small, that they had not developed according to his gestational age, and that he would likely die within five days of his birth," Anna says.
But Roman miraculously survived, and on the 10th day, he was moved to one of Moscow children's hospital, where there was a nephrology department.
There, a nephrologist told to Anna and Oleg that Roman's condition would lead to a number of disabilities: he would have difficulty walking, as well as problems with his hearing, vision and mental development. Oleg asked doctors there about kidney transplant as a possibility for Roman. They answered that it was not a good idea and that children under five years had little chance of survival, in Russia especially. Instead, doctors suggested peritoneal dialysis.
"Nevertheless, we did not lose hope and were determined to do everything for our little son to get him out of disease. We staunchly believed in the best, and today we can say that our grit was rewarded by our very active and cheerful boy," Anna says.Â Read the rest of this entry »
December 3rd, 2013 · Leave a Comment
After heart surgery, Deshawn Corbin can run, jump and swim like a kid ... for the first time
Deshawn Corbin is just 15 years old. But heâ€™s already experienced more life than most people many times his age.
Deshawn was born with complex congenital heart disease that affected the way blood traveled through his body and kept him from getting enough oxygen. His teenage mother, whoâ€™d had no prenatal care, realized she would be unable to care for a child with such special needs and gave him up for adoption. On the day he was born, Deshawn became a ward of the state and had his first open heart surgery. Read the rest of this entry »
Tags: Cardiac Surgery, Congenital Heart Disease, Dr Ann Reed, Dr Ben Eidem, Dr Harold Burkhart, Fontan Procedure, Juvenile Rheumatoid Arthritis, Mayo Clinic Children's Center, Patient Stories, Pediatrics