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Alex

Alex, 6

“Can I get sick again so I can go see Dr. Lanning?” 6-year-old Alex Snead asked his mom this spring.

Although Alex’s mom, Sylvia Pegram, said David A. Lanning, MD, PhD, Professor of Surgery and Pediatrics and Co-Surgeon-in-Chief, Children’s Hospital of Richmond at VCU (CHoR), “left a lifelong impression and will always be near and dear to us,” she would prefer a friendly get-together instead of the esophageal duplication cyst that caused Alex intense stomach pain and had to be surgically removed in April.

Tummy Troubles

Alex’s stomach issues began as a toddler when doctors believed his random stomach aches and vomiting were related to reflux or eating certain foods. In February, when Alex developed a fever and began screaming about stomach pain, Sylvia, an emergency room nurse, said she “knew something wasn’t right.” She rushed Alex to the hospital where she works, and he had a CT scan to rule out appendicitis.

Alex’s appendix was fine, but the scan found masses on his esophagus and liver. His pediatrician referred him to one of two pediatric surgeons, only one of whom practiced at CHoR.

“There was no question where we were going to take him,” Sylvia recalled of her decision to drive to CHoR from her Bon Air home. “Dealing with something that could be a big thing, I knew we were going to Children’s Hospital.”

Dr. Lanning diagnosed the kindergartener with an esophageal duplication cyst, a rare inherited lesion that develops in utero and has no known cause. He also referred Alex to CHoR’s gastroenterology and nutrition specialists to rule out underlying gastrointestinal (GI) problems. An endoscopy determined Alex’s symptoms were not related to GI issues.

“Esophageal duplication cysts are quite rare,” said Dr. Lanning, who has cared for a couple of patients with these cysts in 14 years. “They can cause difficulty swallowing and reflux symptoms, but the biggest concern is if [they get] infected, which can then be a significant problem [because they become] very difficult to remove.”

Surgical Intervention

Because Alex had been sedated during his endoscopy, Sylvia said he knew what to expect and was less anxious for his surgery. Although Dr. Lanning explained all possible scenarios for how Alex’s surgery could go, Sylvia said, “my nerves were a huge ball in my chest.”

Dr. Lanning told Sylvia and her husband, Levion, he hoped to perform a 90-minute minimally-invasive procedure to remove the cyst, which was growing close to Alex’s heart. Five minutes before the 90-minute mark, Sylvia said the recovery room doors opened, and Alex was wheeled past his parents.

“He had no chest tubes, only an oxygen mask,” Sylvia recalled. “Looking at the time and looking at Alex, all the worry I had was gone.”

In addition to taking less time to perform, the minimally-invasive procedure reduces pain, scarring and the length of the hospital stay. Alex had three small incisions in his chest and spent one night at CHoR.

“Everybody who had their hands on Alex that day was amazing,” said Sylvia of CHoR’s nurses, operating room staff, anesthesiologists and physicians. “It was the scariest day of my life but a really good day thanks to the staff.”

Homeward Bound

Alex recovered at home for a week before returning to school. Although he wasn’t able to start the soccer season with his team, his big brown eyes lit up as he flashed a toothless grin and talked about “learning a lot” at school including “clocks, patterns, colors, letters and counting coins.”

“The resilience of kids makes it hard to rest when you feel good,” said Levion of Alex’s desire to play with his three siblings after surgery. “He bounced back very quickly.”

When Dr. Lanning cleared Alex to return to the soccer field a week after surgery, Sylvia said he was so excited he jumped in the doctor’s lap. While the cyst on Alex’s esophagus shouldn’t grow back, Sylvia said doctors will continue to watch the spot on his liver.

“Alex has an excellent prognosis, and his symptoms have resolved completely,” said Dr. Lanning, who has seen CHoR’s pediatric surgery program expand thanks to $4.38 million in support from Children’s Hospital Foundation since 2010. “All in all, it was a great outcome for a very sweet kid and very nice family.”

Sylvia and Levion are thrilled for their son who loves sweet tea, coffee ice cream and spending time with family.

“There are no better hands than those at Children’s Hospital,” Sylvia said. “For my children, it’s the only option.”

Carter

Carter, 7

After spending the first few weeks of his life in the hospital, Carter was diagnosed with Tetrasomy 18p, a rare genetic disorder. At just one month old, Carter was referred to Children’s Hospital of Richmond at VCU (CHoR).

Today, Carter visits CHoR four times a week to receive occupational, physical, speech, and feeding therapies. Because of his hard work, determination, and therapies, Carter has made great progress.

“We’ve had to be patient with most milestones in Carter’s life, but he works hard to overcome anything in his way,” says his mom, Jamie.

Carter enjoys riding the train at the mall, listening to music, and playing with trucks and cars. He loves his family and visiting with friends, and as a result wants to have a party almost every day.

Hayleigh

Hayleigh, 16

Chesterfield | Services: Children's Hospital Foundation Heart Center

 “They lost her for about 15 seconds,” Michelle says, remembering the blur of events surrounding the trip her daughter, Hayleigh, 16, took by ambulance to the emergency room at Children’s Hospital of Richmond at VCU (CHoR).

Hayleigh had been experiencing shortness of breath and lower back pain, but her Down syndrome meant it was difficult for her to explain her symptoms to her parents, Michelle and John. She was admitted to a community hospital, but when her health began to rapidly deteriorate she was transferred to CHoR. Just after arrival, she had a cardiac arrest and required CPR and support by ECMO (a heart and lung bypass machine), which was necessary to save her life but put her leg at risk because a cannula had to be placed in her femoral artery to keep her alive. A CT scan showed a pulmonary embolism, a blockage in her pulmonary artery by a blood clot the size of a quarter. The family was told that Hayleigh had a 10% chance to live.

In the operating room, the Children’s Hospital Foundation Heart Center team repositioned her ECMO support centrally, moving it from her leg, and opened her pulmonary artery to remove the blood clot, while a vascular surgeon simultaneously repaired her femoral artery and performed a fasciotomy to save her left leg. Hayleigh beat the odds by coming off of ECMO after just 36 hours and making a full recovery, including full use of her leg.

“Everyone at the hospital was really genuine and really cared,” Michelle says of the large team that saved Hayleigh’s life. “Hayleigh is back to doing all of her activities—going to school, cheerleading, playing softball.”

“We couldn’t ask for anything better,” John adds. “It’s a perfect ending.”

Mireya and Jalen

Mireya and Jalen

Chesterfield | Services: Hematology/Oncology

Appreciating the Little Things

Venus Bolton describes her daughter Mireya as "the dainty one" of her four children so when Mireya began getting unexplained bruises, including on her neck and in her mouth, two years ago, Venus and her husband became concerned. Following initial blood tests by her pediatrician, Mireya was immediately referred to Children's Hospital of Richmond at VCU's (CHoR) Hematology and Oncology Clinic and admitted to the inpatient unit.

"We went to Children's Hospital of Richmond at VCU not knowing what was going on," recalled Venus. "Her platelet count was very low but her other blood counts were good so we didn't know what we were dealing with."

Mireya was eventually diagnosed with severe aplastic anemia, a disease where the bone marrow stops making red and white blood cells and platelets. Patients with severe aplastic anemia are at risk for serious infections and bleeding because red blood cells are important for carrying oxygen throughout the body, white blood cells for fighting infection and platelets for clotting blood.

Mireya spent 10 days in the hospital then returned to CHoR with a fever and increased bruising. While being evaluated for a bone marrow transplant, one of the treatments for severe aplastic anemia, Mireya developed appendicitis and had surgery to remove her appendix. She also received multiple blood and platelet transfusions during her one-month stay.

"Mireya's family was very inquisitive and involved in her treatment," said Kamar Godder, MD, MPH, Professor and Chief, Division of Hematology and Oncology. "We always encouraged the family to call with questions. We even used Facetime [iPhone’s video conferencing technology] when Mireya's dad was home with her siblings."

After evaluating Mireya's parents and siblings as possible bone marrow donors, it became clear that Mireya's brother, then 6-year-old Jalen, was a perfect match. Mireya was admitted to the Bone Marrow Transplant Unit and began a series of tests and medications including chemotherapy to prepare her body for the transplant. On July 6, 2011, Mireya received a bone marrow transplant, a date her nurses called her "new birthday" and recognized with cupcakes and birthday songs.

CHoR's Hematology and Oncology Clinic treated more than 2,000 patients last year. The Clinic's seven physicians, four nurse practitioners, physician assistant, and dedicated nursing and support staff, which includes a psychologist, chaplain, child life specialist, educational liaison, transition coordinator and two social workers, treat children with sickle cell disease, bleeding and clotting disorders, cancer and other bone marrow diseases. CHoR has the only pediatric bone marrow transplant program in Virginia and provides comprehensive patient care through collaborations with a variety of CHoR specialists such as infectious disease experts, gastroenterologists, neurologists, nephrologists and surgeons.

"Eighty percent of children diagnosed with cancer today survive into adulthood," said Dr. Godder, whose team diagnoses 50-60 new patients a year. "Although aplastic anemia is not a cancer, it is treated very similar to one and should be monitored and followed as such. We provide care from the initial diagnosis through the treatment phase and well into the after-treatment phase."

Mireya responded well to her transplant until March 2012 when her bruising returned, and tests showed her blood counts were dropping again. Doctors suggested another transplant, but this time through stem cells from blood rather than bone marrow. In August 2012, Mireya received her second transplant using blood stem cells from Jalen and recovered quickly. She started kindergarten with home-bound instruction last fall, and by March 2013 began full days at her local elementary school.

"A totally different child has emerged," said Venus of the changes in Mireya since starting school and having most other restrictions like taking baths and eating strawberries lifted. "The little things we haven’t been able to do, we can now do."

Mireya, who loves princesses, drawing and dolls, will continue monthly clinic visits through the summer and is looking forward to having another restriction lifted in August: getting into a swimming pool.

"When you live through isolation and restrictions, you have a new appreciation for things," Venus said. "Children's Hospital of Richmond at VCU has been so amazing to us. They have become like family."