June 14, 2016

61416ChroniclePhilanthropyAd300Texas Children’s is the honored sponsor for every Tuesday’s “Houston Legends” series. For more than 20 weeks, we will showcase the legendary care Texas Children’s has provided since 1954, and focus on milestone moments in our unique history. Also, a complementary website offers a more detailed look at our past, our story and our breakthroughs.

On the right is the Texas Children’s ad that is featured in this week’s Chronicle. Click the ad to visit our companion website at texaschildrens.org/legendarycare. The website will change weekly to complement the newspaper ad, which will be published in section A of the Chronicle on Tuesdays for the next 20 weeks. We also will spotlight this special feature weekly on Connect, so stay tuned to learn and share our rich history.

Click here to visit the Promise website.

61516transplantinside640A team of transplant recipients and living donors from Texas Children’s are in Cleveland, Ohio this week competing in the Transplant Games of America. A group from Texas Children’s has participated in the games for the past several years and will this year compete in 13 different events including golf, baseball, tennis, poker, trivia and more.

“We all are very excited about the opportunity to participate in this event,” said Melissa Nugent, educational coordinator for Transplant Services and a chaperone at the games. “It’s amazing to be here and to see what these children are able to do because they were given the gift of life.”

One of Texas Children’s team members is 13-year-old Cade Alpard. Cade was diagnosed with biliary atresia at 6-weeks-old following being jaundiced at birth. He was put on the liver transplant list by six months of age and at 1-year-old received his transplant. The road to transplantation was anything but easy, though with Cade developing every complication known to biliary atresia and according to his mom, Jennifer Alpard, even inventing his own.

Before receiving a new liver, Cade had a host of issues that landed him in the Pediatric Intensive Care Unit including an adverse reaction to an antibiotic and a central line infection. He was discharged and the family had round-the-clock nursing care at home because Jennifer and her husband, Scott Alpard, both continued to work full time. Cade was fed and given medication through his IV and one night his nurse sent in an order for routine labs, including liver and kidney functions. Jennifer received a confusing call from Texas Children’s Emergency Center that evening explaining Cade was in kidney failure. She asked, “Don’t you mean liver failure?”

The physician explained that because of the antibiotics reaching a toxic level, Cade was not only in liver failure, but also kidney failure and lost his hearing. That night, Cade was admitted to Texas Children’s for the 15th time in his short life and was immediately placed on dialysis. In addition to the liver and kidney failure, he also went into respiratory failure and found himself back in the PICU.

The Alpards were told that patients don’t usually recover from three organ failures, but they didn’t lose hope. Cade spent nine weeks in the PICU and his parents never left his side. One night, Jennifer awoke to Cade’s crib filled with blood. His nurse sprang into action and transfused his blood. A few hours later, the Alpards received the call they were anxiously waiting for – a liver was available.

Dr. John Goss, medical director of Texas Children’s Transplantation Program, and his team harvested a liver from a 3-year-old girl and transplanted it into 1-year-old Cade, who recovered well and went home on 15 different medications. At 15-months-old, Cade received a cochlear implant and began intensive physical, occupational and speech therapy at home and at Texas Children’s. Little by little he learned to crawl and then walk, he learned to swallow and eat normal foods and started down a path of a happy, healthy life.

Now, Cade is a typical 13-year-old boy who loves sports – especially baseball. He competes on a tournament team and plays catcher and second baseman. He’s known as a “diamond thief” because he steals home and is one of the fastest members of his team. Baseball is one of the events Cade is competing in this week at the Transplant Games of America. His dad will join him not only for support, but as a bone marrow transplant donor as well.

Watch an ABC-13’s story about Cade and his trip to the games here.

“These games are truly a celebration of life,” said Sarah Koohmaraie, a liver transplant coordinator, a living donor and a two-time participant in the Transplant Games of America. “It is a time to reflect upon the gift of life that was given by deceased and living donors and donor families.”

Heart Transplant Coordinator and Transplant Games of America chaperone Diana Harter agreed and said the games are a way to celebrate the journey of her patients, all that they’ve overcome and all that lies before them.

“It is a way to honor their hardships and struggles, while embracing gratitude that they are still here to do great things with their amazing gift,” she said. “I feel honored to share this experience with my patients and their families this year – it is an opportunity for us to celebrate the gift of life and remember those donors that made this possible for them.”

61516Butterflyroom640On May 25, Texas Children’s Newborn Center welcomed more than 120 guests to celebrate and bless its newest room – The Butterfly Room – where neonatal intensive care unit (NICU) families can privately say goodbye to their loved ones.

The Butterfly Room is aptly named to represent the patients’ transition from life to death. The conception of this room began 15 months prior to opening and was spearheaded by  a special NICU nurse, Aimee Renaudin, who wanted peace and private care for the grieving parents of her patients.

“This room was inspired by the families I met in the NICU at Texas Children’s who had lost their babies,” Renaudin said. “Their stories, courage and strength were the motivating factor in creating The Butterfly Room. I am honored to know each one of them and consider it the biggest privilege to have taken care of their precious babies. My prayer is that this room will provide a tranquil home-like atmosphere, away from the busyness of the NICU,  a place of comfort and peace for families to say goodbye.”

The celebration, held at Texas Children’s Pavilion for Women, was filled with Renaudin’s friends and family, including her partners in the project, Genie Renaudin (her mother) and Kristen and Adam Wheeless, as well as families who had lost a child at the Newborn Center and saw a need for this type of room.

Thanks to the generous donations from 249 donors, more than $60,000 was raised to support this project and provide comfort for grieving NICU families.

Speakers at the dedication ceremony included Renaudin, Chief of Neonatology Dr. Gotham Suresh, NICU Nursing Director Heather Cherry, NICU Vice President Judy Swanson and Texas Children’s chaplain Kirstin Springmeyer who presided over the blessing of The Butterfly Room.

102317Zoghbi175On May 31, The Shaw Prize Foundation in Hong Kong awarded the 2016 Shaw Prize in Life Science and Medicine to pioneering neuroscientist Dr. Huda Y. Zoghbi, director of the Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital, Howard Hughes Medical Institute investigator, and Ralph D. Feigin Professor at Baylor College of Medicine.

The award was presented jointly to Zoghbi and Dr. Adrian P. Bird, Buchanan professor of Genetics at the University of Edinburgh, for their groundbreaking discovery of the genes and the encoded proteins associated with Rett syndrome.

“I am humbled to be honored by the esteemed Shaw Prize Foundation,” Zoghbi said. “We will use this support to continue the research into how Rett syndrome affects the brain with the hope that our research will impact future treatment options.”

Rett syndrome is the leading cause of intellectual disabilities in girls, affecting one in 10,000, and is particularly devastating as girls affected by the syndrome develop normally for the first few months of life before a catastrophic decline in neurological capabilities.

The Shaw Prize is an international award established in 2002 designed to foster scientific research. Awarded annually, the Prize honors individuals who have achieved significant breakthroughs in academic and scientific research or applications, and whose work has resulted in a positive and profound impact on mankind.

Zoghbi will receive the award, along with Bird, at a ceremony later this year in Hong Kong. The $1.2 million prize will be shared by Bird and Zoghbi.

Zoghbi’s discovery that mutations in the MEPC2 gene cause this devastating neurological disorder paved the way for the development of a diagnostic genetic test for Rett syndrome.

June 7, 2016

6816surgery640In the span of just a few months last year, experts at Texas Children’s Pavilion for Women delivered two babies with extremely large and rare cervical teratomas. The cases represent a growing collaboration between Otolaryngology and the Fetal Center. They also demonstrate the high quality care and expertise Texas Children’s provides patients and families across the globe.

“We tend to take it for granted that a case like this just rolls through the door, and we are able to handle it,” Fetal Center Surgeon Dr. Timothy Lee said about the November 10, 2015, birth of Keisy Cruz Carbajal. “It’s a testament to Texas Children’s and the Fetal Center that we have this team of experts – from the ultrasound technician to the MFM to the radiologists, surgeons and pediatric and adult anesthesiologists – assembled and ready to deploy at any given moment.”

Otolaryngologist Dr. Binoy Chandy agreed and said, “It’s so beneficial to have the exact right type of specialist on hand not just for the delivery, but for the earliest stages of planning and the follow-up care as well.”

The cases of Arya Hill and Keisy are outlined below and have inspired other families like themselves to come to Texas Children’s for medical care.

Arya’s story
At 28 weeks, Maggie Dozler went into early labor due to a build-up of amniotic fluid. She was referred to Texas Children’s Pavilion for Women, where Arya’s teratoma was diagnosed. A multidisciplinary team of experts from Texas Children’s Fetal Center monitored mother and baby closely for the next two months. At 36 weeks, on August 12, 2015, Arya was born with a 180 g tumor blocking her airway internally and protruding from her mouth and nose. A medical team delivered Arya via an EXIT procedure, a cesarean section that leaves the placenta and umbilical cord intact, buying time before the baby has to breathe on its own.

Fetal Center Co-Director Dr. Darrell Cass and Chandy led the procedure, examining the mass, attempting to intubate, and eventually performing a tracheostomy on an airway approximately 3.5 mm wide. Arya was sedated and stabilized while the surgical team planned their approach. When they went in to remove the tumor 16 days later, they found that it was attached to Arya in just one small spot in her throat.

Chandy was able to remove it entirely by endoscope, avoiding external scars. Since then, Arya has recovered almost fully without any additional surgeries or procedures. Her nostrils and lips, once badly misshapen and unable to close, have reverted to normal shape. Arya is being transitioned off her tracheostomy and is working on swallowing normally and transitioning off her g-tube.

Keisy’s story
Shortly after Arya was discharged, the Fetal Center team received a referral for an even larger and rarer type of teratoma. Yesenia Carbajal was 32 weeks along when her daughter Keisy was diagnosed with a cervical “fetus in fetu” teratoma, a condition so rare that only four cases have been identified in medical literature. Maternal fetal medicine specialist Dr. Jimmy Espinoza performed an immediate amnio reduction to stop her from going into labor. Lee was called in to lead the case, and he called in otolaryngologist Dr. Deepak Mehta.

As it turned out, they did not need to deploy right away. Carbajal was able to make it to her scheduled EXIT procedure at 36 weeks, giving Keisy important time for her lungs to develop. During the delivery, Mehta was able to locate Keisy’s tiny airway, avoiding the need for a tracheostomy. Keisy was intubated and sedated for a week while the surgical team carefully studied the teratoma that was attached to the inside and outside of Keisy’s throat and mouth. Composed of different types of tissue, bone and body parts, teratomas of the head and neck are rarer than sacrococcygeal teratomas located near a baby’s tailbone, and removing them is considerably more complex.

“You can’t just go in and remove the tumor right away,” Mehta said. “You need to know exactly where it is and where all the other important structures are, because a teratoma like this moves everything around. You have to make sure there aren’t any surprise elements.”

Keisy’s teratoma went from the base of her throat to the base of her skull, coming through the floor of her mouth and wrapping precariously around her carotid artery. On November 17, Mehta and Lee successfully removed it in a three and a half hour procedure. There was no way to avoid making an incision in Keisy’s throat, but all important structures were preserved and blood loss was minimal. Before closing, Mehta was able to repair the defect in Keisy’s mouth and throat. Today, she is doing extremely well. As was expected, she had difficulty swallowing and feeding and needed a g-tube, but she is in therapy to improve her swallowing and is expected to make a full recovery soon.

“This is a great example of where medicine is heading, and that’s using everyone’s individual expertise, but ultimately working as a unified team,” Mehta said. “This is not something we were able to do because we’ve got one amazing surgeon,” echoed Lee. “It’s a full integrated system of care that has to work in concert.”

6816ChronResearch640Each week, Texas Children’s publishes a newspaper ad and companion website featuring our milestones as part of the Houston Chronicle’s historic Houston Legends series.

Click here for this week’s feature.

6816Catalyst640Every year, this program honors outstanding individuals whose personal leadership and contributions have positively impacted a team, a patient, a family, a process, an outcome or any element of our Texas Children’s mission. Nominations for the 2017 award are being accepted until Thursday, June 30.

Visit the Mark A. Wallace Catalyst Leadership Award website for complete details about the nomination process and this exciting recognition.