One in every 33 babies is born with a health condition, according to the Centers for Disease Control and Prevention (CDC). Collectively referred to as birth defects, a congenital disorder does not mean an individual is defective.

With a goal of improving the lives of people born with a health condition, UT Physicians is proud to recognize January as National Birth Defects Awareness Month.

Importance of recognition

“This is an opportunity for us to highlight all the children who have a diagnosis, but not an advocacy group specific for them,” said Matthew R. Greives, MD, a pediatric plastic surgeon with UT Physicians, director of the Texas Cleft-Craniofacial Team, and founding director of the Vascular Anomalies Program at UTHealth Houston. “Maybe their case is rare, but it doesn’t mean that they’re not important or they shouldn’t be recognized or celebrated.”

Renowned for complex cases

From well-known anomalies like clubfoot, spina bifida, and cleft lip and palate to rare conditions like encephalocele, CLOVES syndrome, and congenital diaphragmatic hernia (CDH), UT Physicians has specialists with deep knowledge and vast experience in treating, comforting, and supporting patients and families.

“We owe our best to children with complex birth anomalies. By no fault of their own, they fight life’s most difficult battles, often before they can walk,” said Matthew T. Harting, MD, a pediatric surgeon and director of the Comprehensive Congenital Diaphragmatic Hernia Program at UT Physicians.

Care before birth

Care can often begin before birth. At the UTHealth Houston Fetal Center, our multidisciplinary specialists can begin treating patients in the womb.

“We help them through the process of having fetal interventions, meaning they have surgeries or treatments while they’re pregnant,” said Jerrie S. Refuerzo, MD, a maternal-fetal medicine specialist at UT Physicians and a professor with McGovern Medical School at UTHealth Houston. “I’m kind of like the link between the fetal world and the newborn world. When we develop a birth plan for these patients, it’s really important to me that I line these up with the requirements of the fetal surgeons and the expectations of the pediatric specialists.”

Comprehensive care

Treating the whole patient means our teams are comprehensive and collaborative, often including neurosurgeons, plastic surgeons, orthopedic surgeons, pulmonologists, neurologists, urologists, genetic counselors, dentists, and more.   

“As a team, we are better,” said Harting, an associate professor and the William J. Devane Distinguished Professor of the Department of Pediatric Surgery at McGovern Medical School. “We work with some of the most talented and dedicated physicians I have seen.”

Commitment to care at any age

At UT Physicians, turning 18 doesn’t mean you age out of our specialists’ care.

Some congenital disorders can be treated and repaired in a pediatric clinic; others, such as CDH, require lifelong monitoring and specialist care.

“These patients have grown up with pediatric physicians at a pediatric hospital and become adults with a very complex problem,” said Harting. “When these very special patients need care, they don’t fit into a traditional health care box, so we created one for them.”

Choosing our team of specialists means you don’t have to turn anywhere else.

“I recently saw a 65-year-old woman who has a vascular anomaly of her lip, and she’s been living her whole life with the incorrect diagnosis and not getting the treatment she needs,” said Greives, the Dr. Thomas D. Cronin Chair in Plastic Surgery and an associate professor at McGovern Medical School. “Because we see everybody regardless of age, there is an opportunity for us to help everyone.” 

What parents should know

If your child was diagnosed with a condition, there is help and support.

“We see you,” said Harting. “There is hope beyond which you can even see.” 

“Our goal is for patients to be happy. I want them to look and talk like everyone else by the time they get to school,” said Greives.

Both surgeons have been with UT Physicians for more than a decade, and during that time, they’ve cared for tens of thousands of children, teens, and adults. They’ve comforted families going through unimaginable challenges, championed their patients’ progress, and celebrated their successes.

What patients should know

At UT Physicians, every patient is a person first. Your health is important. No case is too small; no patient is too old, and no diagnosis is too difficult.

“There are many things we know now that we didn’t know five years ago, and there are many things we don’t know yet that we’re going to know in 10 years,” said Greives. “If you come to us for care, you will be part of a team that is plugged into the latest research, medicine, and scientific advances.”

“You can live a remarkable life every day. We are here to help,” said Harting.

Some of the most common types of congenital conditions include anorectal malformations, where the anus and rectum do not develop properly, and Hirschsprung’s disease, where the colon and rectum are missing nerve cells.

“While these conditions are colorectal in nature, they can also cause issues with several other organ, skeletal, and muscular systems in the body. In forming this group, we wanted to make sure we included doctors from many other disciplines to give these patients the most complete care possible,” said Akemi Kawaguchi, MD, associate professor of pediatric surgery at McGovern Medical School at UTHealth, who initiated the idea for the program.

In addition to pediatric surgeons, the group also includes adult colorectal surgeons, urologists, gynecologists, and neurosurgeons.

“There is a deficit in care during this transitional period when young people need physical, social, and psychological support as they enter adulthood,” said Asha Bhalwal, MD, assistant professor of obstetrics, gynecology, and reproductive services at McGovern Medical School. “That is why there is a need for this clinic as these patients are being transitioned from pediatric clinics to adult care.”

Kawaguchi, along with Linda Li, MD, assistant professor of pediatric surgery at the medical school, uses her background as a pediatric surgeon to consult on cases and provide input on the procedures done for these patients as children, specifically how those surgeries and corrections need to be handled when dealing with the adult patient.

“A lot of the surgeries done on children with colorectal disorders aren’t always taught to adult colorectal surgeons, so our background as pediatric surgeons allows us to provide knowledge and expertise related to how those organs now interact with each other in the adult patient based on what was done for them as a child,” Li said.

Being able to see patients in this type of setting has been a dream of Kawaguchi’s for a long time.

“We started talking about this concept in 2019, but the COVID-19 pandemic brought things to a standstill,” said Hajar Ayoub, MD, assistant professor of surgery and a urologist in the group. “It is nice to have this group finally be able to start seeing patients and providing them with the care they need.”

John Caridi, MD, associate professor of neurosurgery, explained that some procedures done for these patients, such as the cutting of a ligament of the spine to correct a tethered spinal cord, are fairly straightforward and simple, while others, such as surgically correcting scoliosis, can be much more complex.

These procedures can also be complicated by the other surgeries the patient has undergone previously to correct problems with their congenital condition. “If there is significant scarring or if the patient has had numerous surgeries to that area already, we may decide to utilize a different technique,” Caridi said. “It is definitely helpful to have the surgeons who did the previous surgery readily available, particularly since they have already been there and know how things looked to begin with. Communication among the surgeons is key.

The group not only provides surgical intervention and reconstruction for these patients when needed, but also provides non-operative management of incontinence, menstrual cycles, and fertility. Hajar Ayoub offers Botox injections and neuromodulation as a treatment option for issues related to the bladder and Bhalwal helps patients decide which contraceptive option might be best for them.

Bhalwal stressed the importance of seeing patients in a setting like this as one of the best ways to make sure they are getting the comprehensive care they need. “You can’t serve these patients effectively unless you get all of the doctors they might need to see together in one place,” she said.

Marianne Cusick, MD, assistant professor of surgery and colorectal surgeon in the group, agrees with Bhalwal. “This is the way medicine should be practiced,” she said.

Cusick, along with Amit Agarwal, MD, assistant professor of surgery and colorectal surgeon, are able to provide perspective on the colorectal issues these adults face such as screening for colon cancer, treatment for diarrhea and constipation, and treatment of fecal incontinence.

“When these patients come to see us, we can really give them a picture of what they can expect during adulthood based on the treatments they received as kids and how we can help them with anything that might come up,” Agarwal said.

Kawaguchi stressed the importance of these patients finding doctors who can provide relief and guidance for treatment options as they live with their conditions into adulthood. “If they don’t get plugged in with the right physicians, they just live with their symptoms. We want to be able to help them not just live with their condition, but thrive,” she said.

The group meets on a quarterly basis and hopes to increase its frequency in the future.

“So far our patients have been incredibly grateful. They think they are the only one in the world with their particular condition and when they come to see us, they realize they aren’t alone,” Kawaguchi said.

The group is located within the UT Physicians Pediatric Surgery – Texas Medical Center clinic. UT Physicians is the faculty practice of McGovern Medical School. To contact these specialists, call 832-325-7234 and ask to speak with someone with the Complex Congenital Colorectal Program.

Moving to Epic on May 8 benefits patients by providing a complete digital record spanning their entire continuum of care. With many health care entities using Epic, information sharing to access in-depth medical records for patients strengthens our ability to provide continuity of care and our resolve to improve outcomes. The EHR also comes with a robust, secure patient portal digital tool called MyChart, which is branded as MyUTHealth by the university.

“The transition to Epic will streamline services such as scheduling, result notifications, billing, referrals, and population health initiatives. Our goal is to work to migrate all university services involved in medical records initiatives to the Epic platform over the next couple of years,” explained Babatope Fatuyi, MD, chief medical information officer for UTHealth. “The benefits of this comprehensive system will be shared by physicians, staff, and our patients.”

As vice dean of clinical technology at McGovern Medical School at UTHealth, Martin J. Citardi, MD, professor and chair in the Department of Otorhinolaryngology – Head and Neck Surgery, says “The launch of Epic gives us a state-of-the-art system for managing the complex flow of medical information, upon which our clinicians depend in the care of our patients. Our MyUTHealth app will also offer the patients better access to their personal information, plus the opportunity to share information with their care team. Importantly, Epic has been configured to support our triple mission of care delivery, education, and research.”

This transition to Epic will allow staff to improve workflows, strengthen collaborations, and dedicate more time to direct patient care.

As part of the transition to Epic, UT Physicians, the clinical practice of McGovern Medical School, UTHealth Harris County Psychiatric Center, and the clinical practice of Cizik School of Nursing at UTHealth, UT Health Services, will all migrate to the new EHR system on May 8. In February 2022, UTHealth Neurosciences will make the transition as well.

To learn more about the new MyUTHealth patient portal, go here.