August 13, 2018

Thanks to the more than 10 years of dedication and hard work of neonatologists and neonatal nutrition experts at Texas Children’s, Boston Children’s and the University of California at Los Angeles (UCLA) hospitals, premature babies with liver disease now have better access to a potentially lifesaving drug.

On July 27, the FDA approved Omegaven®, an omega-3 fatty-acid-rich lipid solution made from fish oil for use in babies suffering from Parenteral Nutrition Associated Cholestasis (PNAC). For over a decade, Texas Children’s and Boston Children’s have been giving Omegaven® to NICU babies with this disease under compassionate use protocols.

Nearly 20 percent of babies in the NICU develop intestinal failure and are dependent on artificial nutrition (total parenteral nutrition or TPN). Of these infants 25 percent to 50 percent of them develop PNAC, a dreaded complication resulting in long term damage to the liver. Prior to the use of Omegaven®, nearly 50 percent of these babies with PNAC developed liver failure and died, or needed a liver transplant. However, since the use of Omegaven®, 85 percent of infants with PNAC have survived long term, rarely needing a liver transplant.

Being first-hand witnesses to this remarkably improved outcome, neonatologists at Texas Children’s long advocated for the approval of Omegaven. Extensive patient data demonstrating the beneficial effects of Omegaven® on the babies with PNAC from Texas Children’s, Boston Children’s and UCLA formed a crucial part of the new drug approval application submitted to the FDA. Now that Omegaven® is approved by the FDA for use in babies with PNAC, hospitals across the country will have access to it, saving many lives.

“This is a game changer,” said neonatologist Dr. Muralidhar Premkumar. “I am very confident that Omegaven’s approval by the FDA will tremendously improve the outcomes of infants with intestinal failure.”

Program Director of Neonatal Nutrition Dr. Amy Hair agreed and said the approval is “huge, and will most definitely save babies’ lives.”

Over the past decade, liver transplants have decreased nearly 25 percent nationwide in babies with PNAC, mainly as a result of improved multi-disciplinary care of infants with intestinal failure and the use of safer lipid solutions such as Omegaven®. Texas Children’s Newborn Center sees about 25 to 30 babies with the PNAC a year. None of these babies in the past five years have needed a liver transplant.

Charlie and Henry Fitzpatrick were two of those babies. The now 4-year-old twin boys were born prematurely at Texas Children’s Hospital Pavilion for Women and spent six months in the NICU. During their stay, both infants suffered from PNAC and were treated with Omegaven®. Since then, both their liver disease and intestinal failure have resolved. Charlie and Henry are now happy healthy preschoolers.

The twins’ mother, Aly Fitzpatrick, said Omegaven® played a big part in saving her children’s lives and that she is pleased to hear that the FDA approved the drug for use in babies like hers.

“The approval opens up a world of possibilities for these babies,” she said. “Now, more hospitals can embrace this without having to join a research study.”

Because of their experience with the drug, Texas Children’s is uniquely positioned to educate staff at other hospitals about the benefits of Omegaven® and train them on how to use it.

“It gives me great pride and satisfaction that we were part of this successful effort,” Premkumar said. “I would like to thank our dieticians, physicians, NNPs, pharmacists, nurses and of course, the babies and their families who supported us in this endeavor.”

Premkumar added that none of this would have happened if Dr. Steven Abrams and Keli Hawthorne, both former Texas Children’s staff, had not brought this project to the hospital.

August 7, 2018

On August 4, more than 500 patients and families traveled from all over the country for the 2018 Texas Children’s Newborn Center family reunion. The Texas-themed event celebrated former patients who graduated from the Newborn Center in 2017 after spending 10 days or more in our neonatal intensive care units at Texas Children’s Hospital Medical Center Campus and Texas Children’s Hospital The Woodlands.

The reunion was held at Texas Children’s Pavilion for Women where parents shared stories of hope and triumph with other neonatal intensive care unit (NICU) families and reconnected with the nurses and doctors who delivered life-saving care to their critically ill babies.

“The NICU reunion is one of the most special days of the year for those of us who work in the NICU,” said Texas Children’s Chief of Neonatology Dr. Gautham Suresh. “It is uplifting to see the families bring their children back to the hospital, and share the great progress their babies have made. During the reunion the families were able to visit with the employees, physicians and other families that they spent so much time with while being cared for in our NICU. On this day we also remember and pray for the families who unfortunately were unable to take their babies home. The resilience and the strength the families display during their babies’ NICU course and afterwards is admirable and inspires all of us.”

Highlights from the reunion included remarks from Suresh, Assistant Vice President of Nursing Heather Cherry, Newborn Center Family Advisory Committee (NFAC) member Ane Alfred, and Brian Brantley, the underwriter chairman for Bad Pants, an organization that has raised more than $6 million over the past 20 years to support the Newborn Center through the annual Bad Pants Open golf tournament.

The NICU reunion also offered children’s entertainment including a DJ, games, photo booth, face painting, crafts, airbrush tattoos, appearances from Minnie Mouse, SpongeBob Square Pants and Pikachu, and guests enjoyed a good old-fashioned Texas barbecue.

The Newborn Center team thanked everyone who helped organize this successful event including Texas Children’s NFAC Committee and Bad Pants.

July 17, 2018

When Kristine Hartin’s son was born almost a year ago, she was not prepared for the emergency cesarean section and almost four-week stay in the Neonatal Intensive Care Unit at Texas Children’s Hospital The Woodlands.

Unbeknownst to the first-time mom, her son, Reid, had pituitary stalk interruption syndrome, a congenital abnormality that can cause jaundice, congenital abnormalities and low blood sugar levels. Reid’s diagnosis, in addition to his complicated delivery and low birthweight, prompted doctors at St. Luke’s Hospital in Houston where Kristine delivered, to transfer him to Texas Children’s Hospital The Woodlands, which is close to their Montgomery County home.

During his stay, Reid received expert pediatric care from physicians in a variety of specialties including pulmonology, nutrition and occupational therapy. Slowly but surely he began to gain weight and progress in other areas. At 4 weeks old, Reid’s doctors told his parents their infant was ready to head home.

“I was excited but I was also scared,” Kristine said. “All I could think about was how I was going to manage his care.”

“Transition from the NICU to home is a very exciting time for infants and families, but it can be an incredibly stressful time as well,” said Dr. Candice Allen, medical director of the High-Risk Neonatal Follow Up Clinic at Texas Children’s Hospital The Woodlands, also known as the SOAR Program. “Parents typically experience a significant amount of anxiety regarding how best to care for and nurture their newborn following discharge from the NICU.”

“Families have to shift their mindset from helping their infant survive to considering the myriad of supports and services that may be needed to help their infant thrive,” Allen said. “The vision of the SOAR Program is to help make this transition easier by providing infants and families with the support they need to help these precious little ones grow, learn, and develop to maximize their ultimate potential.”

The SOAR program is geared toward meeting the needs of families with high-risk-infants throughout the child’s first three years of life. The SOAR team consists of multiple medical and non-medical providers, including three pediatricians who have particular expertise in caring for high-risk infants following their discharge from the NICU. These pediatricians work closely with Allen, who is a developmental behavioral pediatrician, to track each infant’s growth and development to ensure that any developmental concerns are detected and addressed as early as possible. Should developmental concerns arise, our team of SOAR Occupational, Physical and Speech therapists are ready and able to provide any therapy services that are needed.

The SOAR team also includes several other providers that families might have met during their infant’s NICU stay, including a pulmonologist, clinical nutritionist, lactation specialist, and social worker, all of whom allow for continuity of care. There also is a psychologist on the team, who provides behavioral therapy and parent training to help address any social-emotional or behavioral concerns that an infant may develop.

In addition, parental stress/anxiety and depression screens are routinely given at follow up visits to make sure any necessary parental supports are in place and to facilitate access to community resources that may be necessary to meet any needs that are identified.

Kristine said Reid sees various members of the team about once a month. All of the visits are scheduled on one day for convenience and collaboration. So far, Kristine said, Reid is doing great. He’s gaining weight, hitting all of his developmental milestones and is happy.

“I don’t know how we would do it without our SOAR team,” she said. “They help so much and make us feel like we are a part of the medical team. We are extremely thankful for their support.”

Allen said she is glad to hear comments like Hartin’s, and that from her perspective, the SOAR program is doing a good job of providing a seamless transition of care for their enrolled high-risk infants, and their families, following discharge from the NICU. In addition, she said it is providing families with a more robust way of tracking their child’s development and that this facilitates early detection and intervention to help address, and hopefully overcome, these developmental concerns.

“Families in the NICU have gone through so much,” Allen said. “Our desire is to support you and your little one in any way we can. Our SOAR Team is ready to help your little one rise to new heights, spread his/her little wings, and SOAR!”

May 15, 2018

On May 6, over 30,000 people from across the Greater Houston community laced up to participate in the 2018 March for Babies walk at the University of Houston, including around 400 Texas Children’s employees, patients and their families who all share the same passion for improving the health of babies.

This year, Texas Children’s contributed $103,000 as a sponsor of the 4.5-mile walk and our employees have personally raised more than $78,000 to date to support the March of Dimes. Baylor College of Medicine, US Anesthesia Partners and Morrison partnered with Texas Children’s and sponsored snacks and dessert, water, t-shirts, a tent and disc jockey.

Several months prior to the March for Babies walk, departments and units from across the organization formed their own teams to help raise money and rally support around this worthy cause. Creative teams across the organization hosted barbecues, designed and sold t-shirts, held bake sales, arranged bike tours and even paid to give their leaders a pie in the face to raise money and awareness. Each of the 30 teams raised an average of $2,600 all of which helped Texas Children’s exceed this year’s fundraising goal of $100,000.

“It was great to see everyone come together and support the March of Dimes’ mission for healthy moms and strong babies,” said Lynda Tyer-Viola, Vice President of Nursing for Texas Children’s Pavilion for Women. “Since 1984, Texas Children’s and Baylor College of Medicine have received more than $16 million from the March of Dimes to support research to prevent birth defects and prematurity. Our long-term partnership has helped significantly improve outcomes and quality of life for some of our most fragile babies – giving hope to patients and families when there once was none.”

May 1, 2018

Hope Elizabeth Richards, one of the formerly conjoined twin girls separated at Texas Children’s earlier this year, was discharged April 25 after spending 482 days in the hospital. Hope joined her sister, Anna Grace, who was discharged on March 2.

The Richards family is looking forward to returning to their North Texas home soon. They are grateful for all of the support and prayers they received throughout their daughters’ journey.

“This is the moment it all feels real,” said Jill Richards. “We are so excited for Hope to join Anna and her brothers at home. Our family is eternally thankful for the doctors, nurses, child life specialists, physical therapists and many others at Texas Children’s who took incredible care of our precious girls.”

On January 13, Anna and Hope were successfully separated by a multidisciplinary team of nearly 75 surgeons, anesthesiologists, cardiologists and nurses from eight specialties performed the seven-hour procedure. In preparation for separation, on November 6, 2017, Anna and Hope underwent surgery to place tissue expanders in order to allow their skin to grow and stretch.

The girls were born on December 29, 2016 at Texas Children’s Pavilion for Women, weighing a combined 9 lbs. 12 oz. Delivered via Cesarean-section at 35 weeks and five days gestation, Anna and Hope were conjoined at their chest and abdomen, through the length of their torso and shared the chest wall, pericardial sac (the lining of the heart), diaphragm and liver. In addition, they had a large blood vessel connecting their hearts. They were welcomed by their parents, Jill and Michael, and older brothers Collin and Seth.

The Richards family, learned Jill was carrying conjoined twins during a routine ultrasound. The family was then referred to Texas Children’s Fetal Center, where they underwent extensive prenatal imaging, multidisciplinary consultation and development of plans to achieve a safe delivery and postnatal care. They temporarily relocated to Houston in order to deliver at Texas Children’s and to be close to the girls during their hospital stay. For the past year, Anna and Hope have been cared for by a team of specialists in the level IV and level II neonatal intensive care units (NICU).

March 27, 2018

Drs. Muralidhar Premkumar (from left), Melissa Carbajal, Neonatology faculty, and Gautham Suresh, section chief (right), congratulate third-year fellow Dr. Erynn Bergner, as the 23rd annual Arnold J. Rudolph Memorial Grand Rounds award recipient. The award recognizes third-year fellows in neonatal-perinatal medicine for outstanding teaching, patient care, scientific inquiry and professional integrity. Eduardo Salas, PhD, professor of Psychology and Chair of the Department of Psychology at Rice University, was this year’s invited speaker at the recent grand rounds.

The Arnold J. Rudolph Memorial Grand Rounds was established in 1996 by the Section of Neonatology, in the Department of Pediatrics at Baylor College of Medicine, in memory of its late Section Chief, Dr. Arnold J. Rudolph, who died in 1995. Dr. Rudolph was a well-respected clinician and educator, recognized internationally as a leader of neonatology.

March 13, 2018

Less than two months after being separated from her sister Hope in a seven-hour surgery at Texas Children’s Hospital, Anna Grace Richards got to go home.

Anna was discharged from Texas Children’s on March 2 after spending 428 days in the hospital. Hope is expected to be able to go home in the near future. The formerly conjoined identical twin girls were successfully separated at Texas Children’s Hospital on January 13. A multidisciplinary team of nearly 75 surgeons, anesthesiologists, cardiologists and nurses from eight specialties performed the seven-hour procedure.

The girls were born on December 29, 2016, at Texas Children’s Pavilion for Women, weighing a combined 9 lbs. 12 oz. Delivered via Cesarean-section at 35 weeks and five days gestation, Anna and Hope were conjoined at their chest and abdomen, through the length of their torso and shared the chest wall, pericardial sac (the lining of the heart), diaphragm and liver. In addition, they had a large blood vessel connecting their hearts. They were welcomed by their parents, Jill and Michael, and older brothers Collin and Seth.

The Richards family, from North Texas, learned Jill was carrying conjoined twins during a routine ultrasound. The family was then referred to Texas Children’s Fetal Center, where they underwent extensive prenatal imaging, multidisciplinary consultation and development of plans to achieve a safe delivery and postnatal care. They temporarily relocated to Houston in order to deliver at Texas Children’s and be close to the girls during their hospital stay. For the past year, Anna and Hope have been cared for by a team of specialists in the level IV and level II neonatal intensive care units (NICU).

The Richards family will remain in Houston until Hope is able to go home.

Click here to read a more detailed story, to watch a video and view a photo gallery below about the separation of Anna and Hope.