Although she wouldn’t call herself “100% anti-vax” at the time, Amanda Carroll declined to give her first-born son his hepatitis B vaccine at birth.

With the next group of shots scheduled at his 2-month checkup, Amanda and her husband weren’t so sure what they would do next.

Amanda met with her pediatrician, Justin Smith, M.D., who was then in Abilene, and expressed her concerns. She talked about spacing out the vaccines or delaying them. She was concerned about the sheer number of pokes, the number of vaccines her baby would be given and wondered about a possible pharmaceutical company profit motive.

She figured she had two months to make a decision and began to read Dr. Robert Sears’ book that promoted a vaccine timetable contrary to the Center for Disease Control and Prevention’s schedule.

Amanda only made it halfway through the book.

At 3 weeks old, her son was rushed to a hospital in Abilene for emergency surgery. He needed a bowel resection after he was diagnosed with a strangulated inguinal hernia. After a code blue, the baby was flown to Cook Children’s by its Teddy Bear Transport team.

The little boy received two more operations at Cook Children’s, including another bowel resection from  pediatric surgeon Patrick Thomas, M.D. In all, the Carroll family’s son spent three weeks in the Pediatric Intensive Care Unit and two more weeks on the surgical floor.

During that time, Amanda and her husband developed a rapport with Dr. Thomas and felt comfortable expressing their concerns about vaccines.

“We talked to him about delaying or spreading out his vaccines,” Amanda remembers. “Dr. Thomas was so nice and he was very polite. He didn’t actually say these words. But in the nicest way possible he basically told us, ‘Really? I put so much work into saving your baby, you cannot do that. He needs to be vaccinated.’”

Because of his condition, the Carroll’s son had developed a blood infection and needed to see a doctor from Cook Children’s Infectious Diseases department. Dr. Thomas found out the physician would be Mark Shelton, M.D. Dr. Thomas told Dr. Shelton about the parents’ concerns.

“We spent an hour with Dr. Shelton. He was able to answer all of our questions in detail. I wish everybody who had the concerns we had about vaccines could have a similar experience,” Amanda said. “I wish they could sit down and talk to someone as knowledgeable about vaccines as Dr. Shelton.”

One memory that sticks with Amanda was when Dr. Shelton addressed Andrew Wakefield, the discredited British doctor and leading anti-vaccine activist. Much of today’s misinformation about vaccines began when Wakefield erroneously published a report linking vaccines to autism. That report has since been debunked.

Amanda recalls Dr. Shelton’s emotion at the mention of Wakefield’s name. He spoke passionately about the harm that Wakefield’s study had caused many children around the world.

Amanda is a sociologist and an educated person. Even after talking to Dr. Shelton, she still wanted to make the decision whether or not to vaccinate her son, using science as her guide.

“I looked at four or five other countries from around the world and found they had remarkably similar vaccine schedules in almost all of the western nations,” Amanda said. “When you looked at the CDC, the World Health Organization and other equivalent organizations, they all stressed vaccination.”

Then during her studying, another thought occurred to Amanda that chilled her to the bone. She had made the decision to not give her newborn boy the vaccine for hepatitis B. She realized after three surgeries and a blood transfusion there had been a chance, although small, that he could have gotten the disease because he was not vaccinated.

Once their son was discharged and recovered enough from his surgery, Amanda took her son to Dr. Smith for his full vaccine schedule.

She has continued to do so with her other two children, now 3 and 17 months old.

Amanda would be the first to describe her parenting choices as a “bit granola or hippie,” and she has several friends who are like-minded. But where she disagrees with some of her friends is about vaccines.

“I respect my friends’ opinions who are against vaccines or are vaccine-hesitant, although I disagree with them,” Amanda said. “I think they are absolutely trying to do what is best for their child, whether they are against vaccines or choose alternate schedules. My husband and I believe in the scientific research that says vaccines are safe. After our experience at Cook Children's, we felt comfortable going ahead with the schedule as is, and we have no regrets.”

For more information on this topic:

• Vaccines and Immunizations
• Common Questions About Immunizations
• Pediatricians Remember Experiences with Measles
• What The First Measles Case in Tarrant County Means for Your Child
• 'Vaccines Are Safe and Effective'
• When It Comes to Your Kids It's Never Just a Virus
• Measles Outbreaks Increase as Vaccination Rates Decrease
• Measles In the Classroom
• MMR/thimerosal/mercury: What you should know

The CDC says more public health research is urgently needed to find out why the dramatic increase in what the CDC describes as a "serious birth defect of the abdominal wall."

Patrick Thomas, M.D., FACS, a pediatric surgeon at Cook Children’s says gastroschisis results from a defect in the abdominal wall with herniation of the abdominal contents (such as intestines, stomach and often the gonads). The hernia is always to the right of the bellybutton.

Treatment includes starting immediate IV fluids and placing the infant in an organ bag below the chest to prevent heat loss and to protect the bowel. Surgical options can include immediate repair by placing the organs back in the abdomen and closing the abdominal wall defect. For cases not responsive to immediate closure, a protective bandage (called a silo) is placed and the bowel gradually reduced until closure of the defect can be performed about a week later.

Dr. Thomas said ongoing studies are needed to identify the causes of gastroschisis, but the current treatment through surgery has produced “great outcomes.”

Candace Gamble, M.D., a medical geneticist at Cook Children’s, calls the report from the CDC on the increasing prevalence of gastroschisis, significant.

“It is particularly important for health care providers in the prenatal and neonatal setting as we care for these babies,” Dr. Gamble said. “While expecting parents have cause for concern, the occurrence is still relatively rare considering there are well over 3 million babies born in the U.S. each year. However, it’s a reminder that every pregnancy has a 3-5 percent risk of some type of congenital birth defect. Thus good prenatal care is essential in detecting these defects early so that these babies can receive the proper management.”

Both Dr. Thomas and Dr. Gamble state that researchers and clinicians do not fully understand why this is happening. There is no known genetic mutation that causes gastroschisis. It is likely due to a number of genetic and environmental factors, which lead to an error in fetal development. Doctors do know that there are certain factors that increase the risk for having a baby with gastroschisis, including being a pregnant mother under the age of 20, smoking, and taking vasoconstrictive medications.

“Prenatal care is very important,” Dr. Gamble said. “A screening test where we measure the maternal serum alpha fetoprotein around 16 weeks gestation can be used to detect some babies with gastroschisis, other abdominal wall defects, and more specific defects. In addition, the anatomy ultrasound at 20 weeks gestation can also be useful to detect this and other congenital abnormalities. However, neither measure can completely rule out all birth defects. It is important for parents to discuss these risk and screening options with their health care provider.”

*Illustration courtesy of CDC.