March 25, 2019

Almost seven years ago, surgeons with Texas Children’s Fetal Center performed their first in-utero neural tube defect repair surgery. Just a few months ago, some of those same surgeons reached a milestone when they completed their 100th neural tube defect repair.

Of the 100 total cases, more than half were performed fetoscopically, an experimental, minimally-invasive surgical approach pioneered at Texas Children’s in 2014 by Obstetrician and Gynecologist-in-Chief Dr. Michael Belfort and Pediatric Neurosurgeon Dr. William Whitehead.

Texas Children’s was the first center in the U.S. to correct neural tube defects, also known as spina bifida defects, fetoscopically and is among just a few centers in the country that offers fetoscopic repair of spina bifida. Texas Children’s continues to offer open fetal surgery for spina bifida, the standard of care since 2012, for patients who do not qualify for or opt not to undergo a fetoscopic repair.

“This milestone shows that we are a mature program, that we have done a lot of these cases, and that our results are equivalent if not better, than anybody else out there doing this,” Belfort said. “We have a level of experience now whereby we can assure patients and families that what we offer is the best in terms of quality and safety.”

Neural tube defect repair surgeries are performed on babies with Myelomeningocele, a developmental defect in which the spine is improperly formed and the spinal cord is open to and fused with the skin. The condition, also known as spina bifida or an open neural tube defect (NTD), occurs in 3.4 out of every 10,000 live births in the U.S. and is the most common permanently disabling birth defect for which there is no known cure.

NTDs are usually associated with motor impairment and hydrocephalus, or the buildup of cerebrospinal fluid in the brain, which requires surgical treatment to drain the fluid via an implanted device called a shunt. It’s common for children with spina bifida to have abnormal function of their bladder, bowels and legs. The goal of fetal surgical repair of spina bifida is to preserve leg function and reduce the need for a postnatal shunt.

The standard of care for spina bifida is neurosurgical closure of the defect in the first days of life, however, advances in fetal surgery and the landmark clinical trial, known as the Management of Myelomeningocele Study (MOMS Trial), proved that a fetal surgical repair leads to decreased rates of hydrocephalus and improved leg function compared to a postnatal repair.

Through their research and outcomes data, Belfort and his team have shown that performing the surgery fetoscopically yields the same outcome for the baby as the open repair, while being significantly less invasive for the mother.

“We are thrilled to offer this innovative and minimally-invasive surgical approach to our patients and their babies,” Belfort said. “We thank the mothers and families who put their trust in our team and have the courage to undergo an experimental procedure.”

First fetoscopic case

The first mother to undergo fetoscopic neural tube repair at Texas Children’s Fetal Center was Althea Canezaro. At 23 weeks pregnant, Althea learned during a routine ultrasound that her son, Grayson, had spina bifida. The Louisiana resident came to Texas Children’s shortly thereafter and met with Belfort and his team.

“After talking with them, it was like, OK, there’s something they can do for us, and if it didn’t work out everyone would be safe,” Althea recalled. “We knew that this was an opportunity to give him the best life that he could have. So, going forward, it was kind of like the ball was in their park. The weight was taken off our shoulders.”

A little more than four years later, Althea and Grayson are thriving. The blonde haired, blue-eyed boy never developed hydrocephalus and was born with full movement of his legs. He is hitting all of his developmental milestones and walks with and without the assistance of crutches.

“He’s a fighter,” Althea said. “You can’t tell him he can’t do anything. He has more determination than you ever want to believe.”

Reaching a milestone

Belfort and his team performed the 100th neural tube defect repair late last year and delivered the healthy little girl, Parker Kate, on March 5. Taylor Avera, the newborn’s mother, said when she and her husband found out their child had spina bifida they were scared to death, but that what they learned at Texas Children’s put them at ease.

“Neither one of us questioned that this was what we needed to do,” Taylor said. “We were excited that we were candidates for the surgery and that we were going to be able to give our baby the best outcome she could have.”

The experimental surgery Althea and Taylor underwent continues to be subject to rigorous oversight by the U.S. Food and Drug Administration, was developed by Texas Children’s Fetal Center in partnership with Texas Children’s division of neurosurgery. The teams practiced on a child’s kickball that replicated the mother’s uterus. Inside the kickball, a doll acted as the fetus. By hoisting the ball into the air hung by various levers and pulleys, the team simulated the movement in the womb and practiced closing the spinal cord.

“The multidisciplinary collaboration with the Fetal Center on this surgical effort is an extraordinary example of the innovative spirit at Texas Children’s Hospital,” Whitehead said. “From a medical standpoint, we believe by closing the defect both in-utero and fetoscopically, is a less invasive procedure for the mother, reduces her risk of preterm delivery and reduces the need for shunts.”

View photos of both Grayson and Parker Kate below.

Texas Children’s Fetal Center is among the nation’s leaders in providing high-risk maternal care and the diagnosis and treatment of abnormalities in unborn and newborn infants. For more information, visit women.texaschildrens.org/fetal.

August 27, 2018

Fetal surgeon and Ob-Gyn-in-chief Dr. Michael Belfort is often reunited with his patients, but the recent meeting he had with Sam Hancock was extra special. The teenager and his family made their way from Utah to Houston to meet Belfort, who saved Sam’s life before he was even born. The meeting was Sam’s 18th birthday wish and his parents, Alisa and Dennis, were happy to accommodate as Belfort’s name holds a high regard in their home.

“As a family, we are so grateful for Dr. Belfort,” Alisa said. “He deserves the credit for the skill and knowledge that gave Sam a chance at life.”

When Alisa was pregnant with Sam nearly two decades ago, an ultrasound showed severe swelling of her son’s neck. Doctors told her and Dennis their baby likely had a very serious condition and would not survive.

Later in her pregnancy, doctors noticed fluid building up in Sam’s chest cavity and told her there was no hope. That’s when the family found Belfort, who was practicing in Utah at the time and gave them the option of having fetal surgery. Belfort placed a shunt into Sam’s chest in hopes that fluid being produced would drain from his chest into the amniotic sac, relieving the pressure on his developing heart and lungs. The shunt worked for a short time, but then stopped. Belfort made a second attempt and it was successful in draining the fluid and taking the pressure off Sam’s heart and lungs.

Sam was delivered two months early as Alisa went into early labor because of extra fluid in her amniotic sac, a condition called polyhydramnios, which stretches the uterus making it extremely large. Despite several attempts to decrease the amount of fluid, labor could not be stopped.

Sam spent three months in the neonatal intensive care unit and underwent another surgery to place drains in his chest to relieve excess fluid. When he was discharged, Sam was on oxygen. At 2 years old, he was diagnosed with craniosynostosis, a condition where the skull bones are fused and cause a misshapen head. To correct the condition and to relieve pressure on his brain, Sam underwent yet another surgery.

Despite a rough start in life, Sam is a fighter. Though he battled some academic delays earlier in life, he worked hard to overcome his challenges and recently graduated with a 3.5 GPA and earned his Eagle Scout award. When asked what he wanted for his 18th birthday, he said he wanted to come to Houston to see Belfort, and to thank him for saving his life and never giving up on him.

“There are no words to express what I’m feeling right now,” Sam said after shaking Belfort’s hand and grinning ear to ear. “I am so happy to be here.”

Belfort said meeting back up with Sam and his family was a real treat and that he had never forgotten them.

“It was an unusual procedure at that time,” Belfort said of the operation he did on Sam more almost two decades ago. “I’m really glad it worked out. Sam is a delightful young man.”

During his visit to Houston, Belfort gave Sam and his family a tour of Texas Children’s Hospital and introduced them to Texas Children’s President and CEO Mark Wallace, who was so honored to meet Sam he personally sang Happy Birthday to the teenager.

After talking to Sam about his hopes and dreams, Wallace told him about his 10 leadership maxims and encouraged him to come up with his own personal definition of leadership.

“Now that you are 18, you are old enough to have your own definition of leadership,” Wallace said. “That definition should reflect you, your personality and your beliefs.”

Sam, who is looking forward to the next journey in his life and will soon be looking for a job, promised Wallace he would work on coming up with his personal definition of leadership and share it with him soon.

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).

April 3, 2018

On March 26, Dr. Wesley Lee, co-director of Texas Children’s Fetal Center, located within Texas Children’s Pavilion for Women, was presented with the Joseph H. Holmes Pioneer Award at the American Institute of Ultrasound in Medicine’s (AIUM) 2018 convention in New York. Each year, the award honors at least two current or retired AIUM members whose clinical or basic science work significantly contributed to the growth and development of medical ultrasound.

Among his many accomplishments, Lee has authored 148 peer-reviewed articles and 20 book chapters pertaining to maternal-fetal medicine, prenatal detection of congenital anomalies, 3-/4-dimensional fetal sonography and fetal magnetic resonance imaging.

November 14, 2017

On November 4, Texas Children’s Fetal Center held another successful reunion event at Texas Children’s Pavilion for Women. Families from around the country and internationally traveled to Houston to reconnect with Fetal Center physicians, nurse coordinators and staff.

Since the first event in 2007, the reunion has brought together patients and their families who received life-saving fetal interventions and fetal surgeries and has become a cherished experience for families and staff alike.

“Many of these families spend extended periods of time with the Texas Children’s Fetal Center staff and in our neonatal intensive care unit,” said Dr. Oluyinka Olutoye, co-director of Texas Children’s Fetal Center. “A bond is formed among our patient families and the team members that treat their children. These families trust us with the wellbeing of the most precious parts of their lives – their children. We don’t take the responsibility lightly, and we cherish the opportunity to see these children grow.”

Jeff and Margaret Boemer reunited with other patient families to celebrate the lives of these precious miracle babies that were cared for at Texas Children’s by our maternal fetal medicine and NICU staff.

“We are grateful to Texas Children’s and all of the doctors who gave us hope and didn’t let us give up on our baby,” said Boemer, whose daughter Lynlee underwent fetal surgery at Texas Children’s to remove a large tumor (sacrococcygeal teratoma) growing from her spine. “It is a joy to have our daughter with us every day and an honor to share Lynlee’s story with other moms going through similar circumstances.”

After recently celebrating their daughter’s one year birthday in June, Lynlee is doing remarkably well and continues to inspire and impress her parents and doctors. In fact, she reached a huge milestone – she started walking and loves to play games with her older siblings.

John and Elysse Mata also attended the fetal reunion celebration with their 3-year-old twin daughters Knatalye and Adeline, who spent 10 months being cared for in our neonatal intensive care unit before being successfully separated in a 24-hour operation on February 17, 2015, at Texas Children’s Hospital.

Stay tuned to Connect for an upcoming article on the Mata twins’ remarkable progress since their historic separation surgery nearly three years ago.

October 10, 2017

Texas Children’s collaborative work to develop a novel device to anchor the chorio-amniotic membranes during fetal surgery was recently funded by the Eunice Kennedy Shriver National Institute Of Child Health & Human Development (NICHD) of the National Institutes of Health (NIH).

Partnering with Baylor College of Medicine, the Department of Bioengineering at Texas A&M University, and local life sciences commercialization firm Fannin Innovation Studio, the $225,000 Small Business Innovation Research (SBIR) grant will be used to advance the development of a device that can be introduced into the uterine cavity under ultrasound guidance to anchor the chorio-amniotic membranes, thereby reducing the risk for premature rupture of membranes (PROM) during fetal surgery.

Preterm PROM is the most frequent complication associated with fetal surgery and can increase the risk of premature delivery that could potentially add the insult or prematurity to the fetal anomaly that leads to the need for fetal surgery.

Through the Texas A&M undergraduate and graduate design program, a group of Texas A&M engineering students collaborated with Dr. Jimmy Espinoza and OB/Gyn-in-Chief Dr. Michael A. Belfort, obstetricians and gynecologists, and fetal surgeons at Texas Children’s and Baylor, to create the device in 2016. Espinoza and Belfort challenged the students to develop innovative tools that could be percutaneously introduced into the uterus during fetal surgery to anchor the chorio-amniotic membranes in order to reduce the risk of preterm PROM.

Fetal surgery is a relatively new discipline that aims to reduce the risk for fetal death in conditions such as twin-to-twin transfusion syndrome, severe fetal anemia, congenital diaphragmatic hernia or fetal hydrops, or reduce the long term complications and improve the quality of life in conditions such as spina bifida. Texas Children’s and Baylor are at the forefront on fetal surgery in the U.S. and have innovated techniques to make fetal surgery safer for the mothers and their unborn children.

After extensively collaborating with Texas Children’s surgeons to understand the challenges of anchoring the chorio-amniotic membranes during fetal surgery and the need for refinement, the collaborative team developed a device that can be percutaneously introduced into the uterine cavity under ultrasound guidance in order to anchor the chorio-amniotic membranes to reduce the risk for preterm PROM. This new innovation in fetal surgery could potentially be used in all fetal surgeries because of its percutaneous approach and should reduce the risk for the most common complication associated with fetal surgery, namely pre-term PROM.

“The development of new devices and new approaches in fetal surgery is very important to make fetal interventions safer not only for the fetus but also for the mother,” said Espinoza, co-director of the Fetal Center at Texas Children’s. “The decision to proceed to fetal surgery is very altruistic for the mothers because they will be exposed to risks associated with surgery for the benefit of their unborn child. Thus, we have the obligation to minimize those risks. This award recognizes the academic partnerships that are necessary to advance the frontiers of fetal surgery.”

The team’s invention has won the top prize at Texas A&M University’s 2016 annual Engineering Design Showcase. The project was judged against over 700 students on more than 150 other projects.

June 13, 2017

Lynlee Boemer, a miracle baby who underwent fetal surgery performed at Texas Children’s Fetal Center to remove a large tumor (Sacrococcygeal Teratoma) growing from her spine, celebrated her first birthday on June 6.

Last week, Jeff and Margaret Boemer were at Texas Children’s for their daughter’s follow-up clinic appointment with Dr. Oluyinka Olutoye, co-director of the Fetal Center. Since their daughter’s surgery, Lynlee is meeting all of her milestones and is very active. She loves to crawl, pull up to stand and has several favorite words she likes to say like, “hi, bye-bye and Mama and Da-Da.”

“She has been in physical therapy, and thankfully, we have been able to take a break from that since she is doing so well,” said Lynlee’s mom Margaret Boemer. “She’s pulling up and almost walking. But we’re also seeing other doctors to check for GI and urology type issues. But other than that, she is doing really, really well.”

Boemer says one of the biggest blessings of sharing Lynlee’s story has been that other women pregnant with babies who have the same diagnosis as Lynlee are reaching out to her via social media, and she is able to give them hope and often refers them to Texas Children’s Fetal Center.

Boemer was 23 weeks and 5 days pregnant with her daughter Lynlee when she underwent emergency fetal surgery to remove the baby’s Sacrococcygeal Teratoma (SCT), a large vascular mass. Occurring in only 1 in 40,000 pregnancies, Lynlee’s SCT was robbing her blood supply and would eventually cause heart failure.

Lynlee had a 50/50 chance of survival. Olutoye and a surgical team worked for approximately five hours to remove the tumor growing from the baby’s tailbone, which was almost larger than the baby herself.

During the surgery, Lynlee’s heart stopped and had to be re-started and she was also given a blood transfusion. Surgeons made an incision in Margaret’s uterus and pulled out the baby from her legs to her torso so they could remove the tumor. Once the incision was closed, Lynlee was placed back inside of her mother and Margaret’s uterus was sewn shut and she was on bed rest for the remainder of her pregnancy. Surgeons were able to remove about 90 percent of the tumor, but as the pregnancy progressed, the tumor began to grow again.

Margaret was 36 weeks pregnant when Lynlee Hope was born for the second time via C-section on June 6, 2016 weighing 5 lbs., 5 oz. Lynlee was taken to the level 3 NICU for an evaluation, but was doing so well she was transferred to the level 2 nursery. At 8 days old, Lynlee underwent a second surgery to remove the rest of the tumor from her tailbone including some that had grown inside of her body.

Olutoye removed the remaining SCT tissue and Lynlee recovered wonderfully in the NICU and was able to go home just weeks after her surgery.

The family, from Lewisville, Texas, is now enjoying life at home as a family of five and they come to Texas Children’s for check-ups as Lynlee grows.

“We’re thankful that we gave her a chance at life,” Boemer said. “And we’re very grateful for all that the doctors at Texas Children’s have done to give her that life and all the wonderful care that they gave me and Lynlee while we were here.”