When a prenatal ultrasound showed that Abby and Tim Longshore’s unborn baby boy, Dalton, probably had a life-threatening urinary malformation, they were immediately sent to consult with experts at Nationwide Children’s Hospital. When Dalton was born, a multi-disciplinary team of urologists, radiologists and nephrologists were ready and standing by to deliver the specialized care Dalton needed – care that has now lasted for 17 years.[read more...]
Within a few hours of Dalton’s birth, NCH Chief of Urology Dr. Venkata Jayanthi diagnosed him with posterior urethral valve (PUV) disorder, an obstruction of the urethra, the tube that carries urine from bladder and out of the body. The obstruction had developed while Dalton was still in his mother’s womb, and NCH doctors saw that it had already caused significant damage to his kidneys.
After his third day in NCH’s NICU, Dalton received his first of two surgeries to help clear the blockage from his urethra so that his body could effectively flush out liquid waste. He was also put on a daily regimen of antibiotics to help reduce his chance for getting kidney infections, which are more common in kids with PUV.
But at 18-months old, after repeated kidney infections, Dalton received a vesicostomy, a procedure that relieves pressure on the kidneys by diverting urine directly into a bag outside the body. Dalton had the vesicostomy in place for a year, and then doctors performed another surgery to clear his urethra and to close up the vesicostomy.
Just a year later, doctors determined that Dalton’s left kidney was failing and that it needed to be removed. At age four, Dalton made NCH history, becoming one of the first children to undergo a laparoscopic (a minimally invasive procedure that requires only small incisions) kidney removal.
Dalton’s father, a law enforcement veteran and SWAT team member, says that watching his son go into surgery was more difficult than any assignment he had ever faced during his 16-year career.
Emerging from surgery, Dalton’s first words to his anxious parents were “Gameboy.” Since then, Dalton’s health has remained stable. Besides avoiding contact sports and soft drinks, Dalton says that he’s led a normal life, an active gamer, sportsman and drummer who has occasional foam-bullet gun fights with his 6-year old brother.
Now a senior in high school, with his eyes set on college and a career in law enforcement like his father, Dalton says what he remembers most about his surgeries are how the staff would always try to cheer him up. “After hearing me complain that a nurse had given me nasty tasting medicine, one of the orderlies joked that he would get her back for me.”
Dalton’s parents also remember that the team went to great lengths to make them feel comfortable. “They never made me feel stupid no matter how many questions I asked,” Abby says. “Dr. Jayanthi made it clear that we could call him anytime to talk.”
Dalton said that video games helped him pass the time recovering from surgery, and encourages children and parents facing the same condition to “remain calm and trust that they will take care of you.”
Because of the strain PUV can put on kidneys, the disorder can require long term care. Dalton and his family know that his remaining kidney is at risk as Dalton grows, but Abby says she feels confident that they are in good hands with Dr. Jayanthi and the NCH team.
“Dr. Jayanthi has been there every surgery, every visit, and every follow-up – even when we weren’t there to see him. The folks at NCH know that all you want to do is get your child home, and they do everything they can to make the experience good. It’s really a special place.”[hide]
7-year-old Rachel Watton was born with spina bifida – a condition that damaged her spinal cord, leaving her unable to walk and control her bowels. But this spunky and determined second grader hasn’t let her disability slow her down. When bladder and bowel problems threatened to disrupt school and the activities she loves, urology experts at Nationwide Children’s Hospital performed a series of surgeries that help Rachel mange her continence. Now Rachel can focus on the important things in life like summer camp, horses and chocolate cheesecake.[read more...]
Before Rachel Watton was born, doctors diagnosed her with spina bifida, a congenital (happening before birth) condition which caused a part of her spine and spinal cord to be exposed through a small hole in her lower back. Surgeons at Nationwide Children’s were able to repair the opening right after Rachel was born, but the spinal cord and nearby nerves had already been damaged, impacting Rachel’s ability to walk and control her bowels.
Other than small delays in motor development, Rachel’s parents Heidi and Joseph say she was like any normal toddler. During her first outing in a wheelchair, Rachel promptly rolled off to another part of the store, behaving exactly like a curious three year old who has figured out they can adventure away while mom isn’t looking.
“We knew right away that Rachel was not the kind of kid who was going to let life pass her by,” says Heidi.
But bowel and bladder dysfunctions were definitely holding her back. The defect in Rachel’s spinal cord made potty training impossible – while she still had sensation below her waist, nerves in her bowels and bladder couldn’t tell her brain when it was time to go. Every day, Heidi would use a catheter (a tiny tube inserted into the urethra) to help Rachel urinate. Rachel would have to take stool softeners to help empty her bowels. Accidents were frequent, and she was still wearing diapers at the age of five.
Determined for Rachel to start first grade wearing “big girl underwear,” the Wattons contacted the urology team at Nationwide Children’s Hospital about having a procedure that would give Rachel more control over her bladder and bowel and dramatically reduce accidents.
The multi-step procedure involved two major surgeries to rewire her bowel and bladder so that they could be emptied through specially implanted tubes. The tubes are accessible through the abdomen and belly button. The simplified access makes it easier to use a catheter, and allows Rachel to have more independence, and ultimately, more privacy in the bathroom.
“Right before the surgery, we were all nervous, and hugging and crying. Rachel got to pick out a new toy and that helped,” Heidi recalls. “The urology team was also so comforting. They let us stay with her right up to the point where she fell asleep. They answered all of our questions, and kept us updated during the surgery. And the toy was waiting for Rachel when she woke up.”
After a few days of recovery, which included napping, watching movies and drinking hot chocolate in her hospital bed, Rachel returned home.
A month after the surgery, Rachel and her mother threw a “Panty Party,” inviting dozens of girls and their moms from family, friends and the spina bifida community. Instead of gifts, the invitees were asked to bring girl’s underwear to help celebrate that, for the first time in her life, Rachel could wear underwear without fear of having an accident. She received more than 100 pairs.
“Now I know what it feels like to have a wedgie,” Rachel jokes, saying that she was able to find a favorite – and comfortable - pair out of all of the choices.
Rachel is quick, bright and chatty and it’s easy to see why she earned the “kindest camper” award at the camp she attends for other kids with spina bifida. With her new found confidence, Rachel has taken up horseback riding (with her favorite horse Cash) and swimming as part of regular physical therapy. Each year, Rachel and her mother decorate her wheelchair to participate in the annual American Heart Association fundraising 5K walk, and then they celebrate with a mommy-daughter trip to get chocolate cheesecake.
“The procedures were definitely difficult for us, and of course, Rachel, but she is a tough cookie. It has all been totally worth it,” says Heidi. “None of it would have been possible without Dr. (Rama) Jayanthi and his team.”[hide]
Scott and Brandi Greer will tell you that their son Charlie is a smart, busy kid with the kind of “goofy” laugh that makes you want to join in. If he’s not playing soccer or riding his bike, the active five year old will be doing something as long as it doesn’t involve sitting down or being inside. It’s a long way from the day Charlie was diagnosed with a rare birth defect that caused life-threatening blockages in his urinary tract. The expert care from the urology team at Nationwide Children’s began before Charlie was even born and continues today to help keep this lively little boy healthy, happy and on the move.[read more...]
It was during a 20-week ultrasound that Brandi’s physician noticed Charlie had a larger than normal abdomen, and delivered the heartbreaking news that it could be caused by a potentially fatal urinary obstruction. Brandi was immediately referred to a high-risk obstetrician at The Ohio State University Wexner Medical Center and Dr. Rama Jayanthi at Nationwide Children’s Hospital.
The medical teams agreed that there was a urinary obstruction – but were confident that more prenatal tests and a complete workup at birth would help zero in on a diagnosis that would get Charlie the treatment he needed.
A member of Dr. Jayanthi’s team met Brandi at each of her weekly obstetrician appointments at Ohio State to review the baby’s progress on the ultrasound and help answer Brandi and Scott’s questions.
“It was so difficult not knowing how sick Charlie might be or if he would be able to survive when he was born,” recalls Brandi. “But the physician was there for every visit and helped us stay hopeful.”
Right after Charlie was delivered, he was taken to the neonatal intensive care unit (NICU) at Nationwide Children’s where he was diagnosed with a very rare birth defect called Prune Belly Syndrome. Occurring primarily in males, the condition disrupts the development of the stomach muscles (leading to wrinkly, prune-like skin on the belly), causes malformations in the urinary tract, and prevents the testicles from descending.After a few days in the NICU, Charlie was able to go home. He was able to urinate on his own, but an enlarged bladder sometimes caused urine to backflow up into his kidneys, which put him at greater risk for developing infections. Brandi remembers Charlie’s first year being difficult.
“Constant ultrasounds. Bloodwork. Antibiotics to prevent the infections. After a minor surgery, Charlie was briefly unable to urinate which required an ER visit to drain his bladder and decrease further kidney damage,” says Brandi. “When we got to the ER, a member of Dr. Jayanthi’s team was there waiting for us, and we went straight to urology to get taken care of.”
Nationwide Children’s connected Brandi and Scott with a family mentor, a school-aged child who had been diagnosed with Prune Belly as a baby. Discussions with him and his family helped ease some of Brandi and Scott’s concerns about raising a child with the condition.
“What you find online about Prune Belly can be scary. It was really helpful to talk to someone who had gone through it,” says Scott. “I wanted to know really practical things – like if he had gotten teased as a kid. It helped put things in perspective.”
Although Charlie was getting physical therapy to make sure his motor skills continued to develop, the lack of muscles in his abdomen were impacting his ability to walk. Around age 2, he underwent a major 8-hour surgery that helped repair the weakened abdominal muscles and remove extra skin from his belly.
“Of course, we were nervous for our son to have such a long and complicated surgery but it was evident from the moment we stepped into the preoperative area that he was receiving the best care possible,” Brandi remembers.
Charlie made a full recovery and his physical therapy advanced with his improved ability to balance – a skill he put to quick use learning how to ride a bike. At age five, he conquered potty training – which the family celebrated by sending a photo to Dr. Jayanthi.
Now, every six months, Charlie and his parents meet with a combined team of urology and nephrology experts to discuss Charlie’s progress and future. His kidneys are functioning fine, but eventually Charlie may need a kidney transplant, especially as he hits puberty and begins to gain muscle mass.
Today, the only outward sign of Charlie’s condition is a little digital watch that goes off every two hours, reminding him go to the bathroom so that his bladder doesn’t get too full. Brandi has volunteered to be family mentor to help others whose children are diagnosed with Prune Belly, and has these words of comfort for parents who have a child needing urology care at Nationwide Children’s.
“I can’t tell you not to worry, but there is a very high standard of care that continues throughout your child’s surgery and the postoperative stay,” she says. “Your child is going to be in very caring, very capable hands.”[hide]
Watching Brantly Poling fly down the hill near his house on a motorized toy tow truck, it’s hard to imagine that this active two and a half year-old has endured nearly 20 different surgeries to help him survive the complications of spina bifida. Paralyzed below the waist, Brantly has had difficult bowel and bladder problems that have required multiple complex surgeries. Today, thanks to the expertise and committed care of the urology team at Nationwide Children’s, this “little daredevil” is on his way to making a full recovery.[read more...]
Sixteen weeks into their pregnancy, Brooke and Rocky Poling got the news that their son Brantly had spina bifida, a congenital disorder where a part of the spinal cord grows outside of the body. When Brantly was born, he was rushed to Nationwide Children’s where he had his first of nearly a half dozen surgeries to help relieve life-threatening build-ups of spinal fluid in his brain.
The location of Brantly’s spinal cord injury also caused him to be paralyzed below the ribcage. Because the nerves in his bowel and bladder couldn’t feel when it was “time to go,” his parents had to manually help his body eliminate liquid and solid waste several times a day using catheters and enemas. Despite ongoing antibiotic therapy, Brantly kept getting urinary tract infections. Tests showed Brantly’s kidneys were being damaged by trapped urine. At just eight months old, he underwent a complicated surgery called a vesicostomy that would allow urine to drain directly out of a tube through a stoma (hole) in his abdomen, and prevent waste from getting backed up into his kidneys.
The vesicostomy initially worked, but after a few months, the stoma would close, requiring Brantly to undergo another surgery to re-open the hole. Despite the surgeries, scans showed that Brantly’s kidneys still weren’t improving. After the fourth vesicostomy surgery, Brooke and Rocky, and the urology team felt it was time to try something different.
“We thought we were mentally prepared for all the developmental and physical complications that go with spina bifida. But the reality is that no one can prepare you to watch your baby go into surgery that many times,” Brooke recalls. “Thankfully, the urology team was with us every step of the way.”
The team, headed by Dr. Rama Jayanthi, decided to rebuild Brantly’s bladder, re-implant his ureters (the tubes leading from the kidneys to the bladder) and perform a procedure that would help him eliminate liquid waste through an almost undetectable hole in his belly button. The doctors also implanted a small port in Brantly’s abdomen that would enable his parents to easily flush solid waste out of his body. After overcoming a small complication where Brantly’s reimplanted ureter temporarily swelled shut, the toddler has made a fast recovery.
Today, Brooke says that when Brantly is not giving her heart palpitations by speeding around in his wheelchair or motorized mini-tow truck, Brantly is a curious, talkative and “hilarious” kid.
“Brantly knows no strangers,” Brooke laughs. “At the mall, he’ll speed up to people on his wheelchair, pull up his shirt, point to his port and say ‘Look at my button!’”
Besides the criss-cross pattern of marks on his tummy from multiple surgeries, Brantly doesn’t seem to bear many emotional scars of a child who’s been faced with so many hospital visits, something that Brooke attributes to the staff at Nationwide Children’s.
“Brantly was always scared going in, but the staff would play with him, joke with him. They answered every question, and always put us at ease,” Brooke says.
Today, Brantly’s family drives two and a half hours each way for his appointments to check on how he is healing and his kidney function. His parents say that Brantly takes it all in stride, copying a favorite TV cartoon doctor with a smile and saying, ‘It’s time for a check-up.’
“For parents out there who are just starting this journey, I’ll tell them that it’s going to be overwhelming at first. But, at Nationwide Children’s, you are in good hands,” says Brooke. “There will be hard days, but the good does outweigh the bad.”[hide]
When an overactive bladder was causing 8-year old Austin Noel to miss out on the things that most second-graders took for granted, he started wondering if he would ever do the things that "regular" kids did - hang out with friends, go to parties and play on a sports team. With help from the pediatric urology team at Nationwide Children's Hospital who are pioneering the use of innovative technologies, this once shy boy is now living like a "regular" kid again.[read more...]
Austin's mom Crystal didn't notice any issues until Austin was three years old. After six months of being successfully potty trained, Austin began to have multiple accidents. At first, Crystal and Austin's pediatrician thought that Austin was simply having a potty training set back. Then they discovered that Austin couldn't feel when it was time to urinate. Austin's doctor immediately referred him to the urology team at Nationwide Children's.
At Nationwide Children's, Austin received a diagnosis of overactive bladder, a condition that causes the nerves in the bladder to misfire and miscommunicate with the brain about when it's time to go. For several years, Austin was on medication to help control his bladder. Physicians even tried medications normally reserved for adults with the condition, but nothing worked long term.
While he was in preschool, Austin's doctors performed a surgical procedure on his lower spine, in the hopes that it would help improve a nerve communication problem between his brain and bladder that was suggested by an MRI scan, but that wasn't ultimately successful, and the accidents - as many as ten a day - continued.
"We rearranged our lives around being able to find a bathroom. We brought extra clothes everywhere," Crystal recalls. "But those are the easy things. The hard thing is seeing how difficult all of it was for Austin and not being able to fix it."
Many of these accidents occurred during school, causing Austin to be reluctant about making friends. His isolation made him the brunt of teasing by schoolmates, who weren't aware of Austin's medical issues. At age 7, Austin had never once been invited to a birthday party.
"For such a great kid to be so sad - it's devastating," Crystal says, her voice softening "He just really deserved a break."
Austin got that break at the beginning of second grade, when pediatric urologist, Dr. Seth Alpert, identified Austin as a good candidate for a surgical procedure called sacral nerve stimulation. Dr. Alpert and his team are one of very few pediatric urologists in the nation using this treatment.
First, Austin underwent a procedure to connect a small electrical lead (wire) placed near his sacral nerve at the base of his spine to an external neurostimulator device, about half the size of a smart phone that he wore around his waist for a few weeks. After the lead wire had healed in place (with help from a protective big brother and sister) and Dr. Alpert could confirm the device was working, he then implanted a small permanent internal battery and connected it to the wire under the skin in Austin's lower back.
"Machiney" as Austin calls his device, has completely changed his life. By the middle of second grade, Austin had been invited to his first birthday party, he was making new friends, and playing on a soccer team. Crystal says that now Austin only has about one accident a week and that thanks to the team at Nationwide Children's, the change in his personality has been nothing short of miraculous.
According to Dr. Alpert, “Sacral nerve stimulation is typically a last resort for kids that weren’t helped by a combination of medications and/or behavioral management. For those few, sacral nerve simulation has the potential to significantly improve their symptoms and to markedly improve their quality of life as it has done for Austin.”
"Everyone from the receptionist to the nurses to the surgeons performed a miracle on my son. He was so sad. He had no friends," says Crystal. "Now, Austin is happy. He hasn't stopped smiling since his surgery."
Austin agrees, saying that "Machiney" is awesome.
"God performed a miracle on me by helping the doctors get Machiney," Austin says. "The doctors helped me know I'm special and that I'm strong."
Crystal says that they celebrate each accident free day with hugs and high fives. For families and children who may be facing a similar situation, she offers this advice:
"Tell your child exactly what's happening. I always told Austin the truth, and so did his doctors," she says. "Stay positive and go for any chance you have. The staff at Nationwide Children's made us feel so special all the time - and that made it easier to believe that everything was going to be okay."[hide]