When Diana Garcia de Pena was five months pregnant, an ultrasound revealed that her baby boy’s kidneys were not developing properly. “I could not believe he had this problem,” she recalls. “All we could do was wait for him to be born and see what would happen.”
David Garcia was born on October 13, 2012, in Edinburg with several complications, including only one functioning kidney that was blocked so urine could not leave his body. By the time David was about five months old, it was clear that his one functioning kidney was not adequate to filter his blood and remove waste. David had to begin dialysis and was referred to the Driscoll Children’s Hospital Kidney Center, the only comprehensive pediatric kidney program in South Texas, and home to the area’s first and only kidney transplant program.
David began with peritoneal dialysis, a process in which the abdominal cavity is manually filled with fluid and drained. David’s mother was trained in the procedure so she could care for David at home. At first, she doubted her ability to perform dialysis, but the Driscoll staff helped her gain the confidence and technical skill to care for her son.
“We came back home with everything – the machines and medicines – and I would do the dialysis here at home seven days a week, 10 hours daily from Monday to Sunday,” she recalls. “It was something beautiful, something new that I learned so I could help my son above all.”
As an infant, David tolerated peritoneal dialysis well. But as he got older and wanted to be more active, things got more difficult. By the time he was 2 years old, David developed common complications from peritoneal dialysis, including infections that could be life threatening. He switched to hemodialysis, which is performed in the hospital. For the next year, David spent most of his time at Driscoll undergoing dialysis and having about 20 surgical procedures to prepare him for a transplant.
Dr. Stephen Almond, Chief of the Division of Pediatric Surgery and Transplantation at Driscoll Children’s Hospital, got the call that a kidney was available for David on November 7, 2015. The transplant went off without a hitch and, in fact, Dr. Almond recalls that David’s new kidney began working at once. Life after a transplant is much easier than life on dialysis. “Children grow better, they learn better, they have a better quality of life and so do their families,” says Dr. Almond.
Today, David is a happy and healthy 4 year old with an excellent prognosis. He sees Dr. Samhar Al-Akash, his pediatric nephrologist and Medical Director at Driscoll Children’s Kidney Center and Renal Transplantation at the Driscoll Children’s Valley Dialysis Center every six weeks or so. He takes transplant medication and follows a special diet to balance his nutritional needs. Diana says David loves video games and riding bikes He knows the name of his kidney donor and can matter of factly tell you that his kidney was a gift from someone else. Thanks to that life-saving gift, David now has a future full of promise and hope.
There is a picture Sara Cavazos keeps as a memento of her time at Driscoll Children’s Hospital in Corpus Christi. She is surrounded by the staff of the fourth floor where children try to power through chemotherapy treatments and parents pray for good news.
In the picture Sara, who was 8 at the time, looks very sad. And who could blame her after the intense rounds of chemotherapy, the loss of her hair or the loss of time just being a kid.
But, Sara said, that was not why she looked so sad.
“I knew I wasn’t coming back anymore,” she said. “And I knew I was going to miss them.”
She had come to trust and appreciate the special people who work in children’s oncology. Especially Mo.
Mohammad ‘Mo’ Waseemuddin, RN was the first nurse to take care of Sara when she came to Driscoll Children’s Hospital in 2012. Sara had been diagnosed with Wilms Tumor, a type of cancer that starts in the kidneys of young children. She was shy and afraid but Mo made her feel safe.
No one could ever replace him, said her mother Anna Mendoza.
In fact, no one could replace the entire staff or the level of care they received.
“I couldn’t see having her go anywhere else. The doctors talk to parents. The social workers are there and willing to help. The nurses are wonderful. Everyone was honest and straightforward even when things weren’t picture perfect,” she said. “They do everything they possibly can to make you feel like you are never alone. You are part of a family.”
Sara is in remission now and has been for a little more than a year. Soon she will go in for a check-up to make sure she is healthy. After one relapse and two rounds of intense treatments she gets a little nervous. She doesn’t want the cancer to come back, she said. No one does.
In the meantime she is focused on dance, school, and just being a kid. She is happy that her hair has grown back so she doesn’t feel as different anymore. She still really misses her Driscoll family and visits whenever she can.
“They are just such a special group,” her mother said.
For Waseemmuddin, 31, the opportunity to take care of young patients like Sara for the past four years has been a privilege.
“To see these kids and what they go through… the treatments and the level of pain their little bodies endure. They are so resilient,” he said. “And then to see them bounce back with a smile on their face… it’s amazing.”
Smiles. Smiles and the cutest little bumblebee glasses are what he remembers of Sara. Like her he recalls the first time he met the bright 9 year-old who loves to play with her sisters and dance ballet. She had just come out of the surgery to place the tube in her chest that would deliver the strong doses of medicines into her system. She was very cautious of anyone who came near her.
“But she trusted me.”
That was important. And not just to Sara.
If Driscoll Children’s Hospital’s Miracle Child Olivia Hope Stephenson were a singer, she very well might be Brenda Lee: “Little Miss Dynamite.” The description certainly fits. The 7-year-old’s voice may not be booming – yet – but she certainly knows how to work a room. In that, she is a pro.
Olivia was born with femoral hypoplasia-unusual facies syndrome, which is characterized by underdeveloped thigh bones (femurs) and unusual facial characteristics. In Olivia’s case, she has no knees or thighs. The exact cause of femoral hypoplasia-unusual facies syndrome is not known.
In addition to femoral hypoplasia-unusual facies syndrome, Olivia has caudal regression syndrome, which impairs the development of the lower (caudal) half of the body. With Olivia, the caudal regression syndrome showed up as her spine being underdeveloped, which, by itself, disposed Olivia to medical problems. Both medical conditions presented challenges to physicians.
“There are so many angles the doctors had to treat her from,” said Dr. Richard Cortes, her pediatrician at The Children’s Clinic. He and her specialists had to take care of her, organ system by organ system. As an infant, she had feeding issues and was on a feeding tube. Cleft palate surgery had to be performed; her club foot was fixed; ear tubes had to be put in. For a while, diabetes was a concern but her blood sugar now has stabilized.
David I. Ryan, MD, a Pediatric Intensivist in the Driscoll Children’s Hospital PICU, remembers Olivia was there with malignant hyperthermia and a difficult airway after surgery. She required extreme vigilance and detailed focused care, but she eventually recovered and was able to leave the PICU. Olivia also required mechanical ventilation, deep sedation and steroids to protect her airway, and prompt therapy to reverse her malignant hyperthermia.
Olivia’s mother had praise for Dr. Ryan and the rest of the PICU staff: “The first two years we lived at Driscoll. They did real good in PICU.” She has a special place in her heart for all those who take such good care of Olivia: “Driscoll is home to us.”
Olivia also goes to speech therapy, physical therapy and occupational therapy. “Olivia does love therapy,” said Stephenson.
Her therapists love her too, and do special things to help Olivia toward her goal of self-sufficiency. Music has been key to Olivia’s therapy, said Occupational Therapist Delma Gomez. Clarice Butler, Lead Physical Therapist at Driscoll, also understands how important motivating Olivia is to her continued improvement. “We try to make everything fun in therapy and we also allow Olivia to choose 90 percent of the activities that she works on in therapy,” said Butler. “That way, she is really empowered to take ownership of her rehab.”
Gomez said, “Olivia is marvelous to work with because even on her toughest days she is always willing to work with us.” And all that hard work is paying off for Olivia, who has accomplished much since beginning her different therapies at Driscoll.
When she began at the age of 4, Olivia was wheelchair-bound, had never stood up on her legs and was unable to get on to her stomach. Now, Olivia is able to walk up to 400 feet in her walker; she is also able to get in and out of her wheelchair independently. Olivia has exceeded all expectations, said Dr. Cortes, who credits her family and her therapists.
Stephenson has some advice for parents of other children who face major medical challenges. “Don’t ever give up. There will be ups and downs, challenges, but be there for your child. Don’t treat them differently. You have to fight every day,” Stephenson said. “You will have your good days and bad days, but they will amaze you in the end.”