Parents never stop worrying about their children’s health, from the day they learn they are pregnant until long after their little one has left the nest. We asked area experts to shed light on some of the biggest issues facing children and parents today, and the latest advancements to help protect kids from womb to adulthood.
[prenatal surgery]
Performing surgery on a baby inside the womb sounds like the stuff of science fiction. Thanks to sophisticated new surgical procedures, however, doctors are able to treat certain life-threatening and disabling defects before birth, offering new hope to families facing the most difficult circumstances.
brave new world
The first open-fetal surgery was performed nearly 35 years ago. The procedure wasn’t widely available, however, until 2011, after an eight-year study sponsored by the National Institutes of Health. Clinical trial results showed the surgery could significantly improve outcomes for babies with spina bifida.
As technology has improved, so have options for prenatal interventions. In addition to openfetal surgery, there are minimally invasive treatments that use ultrasound-guided needles or telescope-guided lasers. These procedures are used to treat a handful of conditions, but high-risk maternal-fetal physicians say new options are on the horizon to treat even more expectant mothers and their babies.
Only a few medical teams in St. Louis offer these complex and challenging prenatal procedures, which can present significant risks for both mother and baby. “We’re lucky to have organizations willing to put these teams together to help these babies,” says Dr. Emanuel Vlastos, SLUCare OB/GYN and director of the St. Louis Fetal Care Institute. “There are still places in America that don’t know these options exist.”
open fetal surgery
The riskiest form of prenatal intervention is open-fetal surgery. The mother is placed under general anesthesia and both she and the baby are given pain medications. The surgeon opens the abdomen like in a C-section, makes an incision in the uterus, then performs surgery on the baby while it’s still in the womb. After surgery, mom stays in the hospital for about five days to rule out complications. “The babies aren’t in any trouble in utero. The repair is done to try and give them a better life after they are born,” explains Vlastos.
The procedure is most commonly used for cases of myelomeningocele, the most severe form of spina bifida, at 19 to 25 weeks gestation. The surgery decreases the need to later place a shunt in the baby’s brain to divert fluid, Vlastos says, and also can improve a child’s neurologic function, allowing him to walk and have bladder and bowel control.
It is major surgery for both mom and baby, and there are risks of infection, bleeding and preterm delivery. About 40 percent of women who undergo the procedure have ruptured membranes and must be hospitalized until the baby can be delivered safely at 34 to 37 weeks. “Mom is electing to undergo a procedure to try for a better life for her baby,” Vlastos notes.
minimally invasive procedures
Less invasive than open-fetal surgery is a fetoscopic procedure, where the surgeon makes a tiny incision to insert a telescope and laser into the uterus. This typically requires only an overnight hospital stay. This is most common with twin-twin transfusion syndrome, where one baby is getting too much blood and the other too little. The laser is used at about 20 weeks to burn the babies’ shared blood vessels to restore balance. In the past, almost all twins with this condition died. Today, 80 percent can survive, Vlastos says. “This has really changed the outcome for this disease,” he notes.
The least risky prenatal intervention is a needle-based, ultrasound-guided procedure frequently used for fetal transfusions. When a fetus suffers from anemia, or low red blood cells, giving donor blood is the only option for survival. Severe anemia is caused by Rh incompatibility (when a mother’s antibodies destroy fetal blood cells) or a viral infection.
“Now with advanced ultrasound technologies, we can screen babies weekly without amniocentesis to identify those who need transfusion,” says Dr. Alison Cahill a high-risk obstetrician at Washington University. Babies typically require repeated transfusions throughout the pregnancy, but most survive and are delivered at term. In the past, none could survive. “We are constantly learning more and improving what we can bring to families,” she says. “We are at a great advantage now because so much progress has been made.”
[the autism spectrum]
One in 68 children is autistic, which means almost everyone knows someone with the brain development disorder. It also means every parent worries their own child may exhibit symptoms of the condition, for which there is no known cause, prevention or cure. October is Autism Awareness Month.
defining autism
A general term for a group of complex brain-development disorders, autism is characterized by varying difficulties with social interaction, verbal and nonverbal communication, and repetitive behaviors. For many years, the American Psychiatric Association’s diagnostic manual divided autism into several disorders of varying severity. Considerable overlap among the conditions caused confusion, however, so in 2013 the organization reclassified them all into one umbrella diagnosis, autism spectrum disorder (ASD ).
“Every child with autism is unique,” says Dr. Ujjwal Ramtekkar, psychiatrist with Mercy Kids Autism Center. While 25 percent of people with ASD are nonverbal, about 40 percent have average to above-average intellectual abilities. “It’s a spectrum, and it’s difficult to tell early on where the child is going to end up,” he says.
ASD is the fastest-growing developmental disorder in the country, Ramtekkar adds, increasing tenfold in the last 40 years. More than 3 million people in the U.S. are on the autism spectrum, and boys are four to five times more likely to be affected than girls. Improved diagnosis is likely one reason for the rapidly growing number of ASD cases, Ramtekkar says. “There’s much more awareness and understanding.”
know the signs
Identifying autism early helps create the best possible outcomes, and about two-thirds of all cases can be diagnosed before a child is 18 months old, says Dr. John Constantino, child psychiatrist at St. Louis Children’s Hospital. “The subtle cases take longer, but most of autism is diagnosed by 3 or 4 years of age.”
Parents of infants and toddlers should watch for red-flag symptoms and contact their pediatrician if these are observed. These symptoms include avoiding eye contact, having trouble understanding other people’s feelings, delayed speech, repeating words over and over, flapping their hands or rocking their body, and getting upset by minor changes. “You want to provide young children as much support as possible, as early as possible,” Constantino says.
Autism cannot be seen on an MRI, but a pediatrician can rule out other diseases or conditions and has access to specialized diagnostic tools to assist in an ASD diagnosis. “Parents shouldn’t jump to a conclusion,” Ramtekkar says. “We have to consider all the possibilities before we make a diagnosis.”
there is hope
Although there is not yet a cure for autism, help is available. After a pediatrician gives an initial diagnosis, the child may be referred to a developmental pediatrician, a child neurologist or a child psychiatrist with training in autism, Constantino says. Each autism intervention plan is unique, but most typically involve behavioral treatments, medicines or both.
“In St. Louis, we also have two state-supported diagnostic centers of excellence, one at Cardinal Glennon and one at Washington University, which are designed to minimize wait times so a child can get intervention right away,” Constantino says. Parents can educate themselves on ASD treatments and resources by downloading a 100 Day Kit at autismspeaks.org.
New genomic technologies also look promising, Constantino says. While screening found a genetic link in only 1 percent of autism cases 10 years ago, that number is now near 30 percent, he says. “As the pace of science moves along, there will be a day when linking a child’s condition to a specific genetic variation will have implications on which treatments may work better.”
[the heroin epidemic]
Each year, about 30,000 12-to-17-year-olds try heroin for the first time, according to the National Survey on Drug Use and Health. Although still uncommon, use of the potentially fatal drug has doubled in the last 10 years. Concerned parents should educate themselves on the epidemic, know the warning signs of heroin use and learn about treatment options.
a growing problem
Heroin use more than doubled among young adults ages 18 to 25 in the past decade, according to the Centers for Disease Control, and the number of heroin-related overdose deaths has increased 286 percent since 2002. Addiction to the opiate affects all ages, races, genders and incomes. The problem spans the nation, but abuse has increased most dramatically in the Midwest.
“The epidemic is very much tied to increased access to the drug,” says Percy Menzies, president of Assisted Recovery Centers of America, which has two outpatient treatment facilities in the St. Louis area. The amount of heroin seized at the Mexican border quadrupled in the 2000s, making the drug cheaper, he says.
Fueling the problem is the ease with which a person can become addicted to heroin. Whether smoked, snorted or injected, the drug gets to the brain quickly to cause an almost immediate rush. “The high you get from heroin is very pronounced,” Menzies says. “It gives your body a jolt that’s hard to ignore. Once you like it, you want more of it. If you have easy access to the drug, the addiction spreads quickly.”
be alert to signs
Among children and young adults, Menzies says, alcohol is the common gateway into heroin use. “This is a time they experiment and are extremely vulnerable to peer pressure.” If they enjoy alcohol, he says, children may up the ante by taking a friend’s prescription pills or stealing from parents’ medicine cabinet. Painkillers like Vicodin are made from the same poppy plant as heroin, but addicts often switch to the illegal drug because it’s cheaper and easier to find.
The effects of heroin can be subtle. “They are extremely good at hiding it,” Menzies says. Early signs include a lack of interest in school, falling grades, violating curfew and sleeping a lot. “One of the biggest red flags is a sudden change of friends.” Parents also can watch for track marks, pinpoint pupils, a difficulty focusing and heavy blinking. Once the addiction is in full swing, “it’s almost a prerequisite of the addiction to lie, cheat and steal,” Menzies says. Watch for missing spoons (used for cooking heroin), prescription medications and money.
getting help
If you suspect your child is using heroin, act quickly because addiction can be treated. “The challenge we have is, unlike with other illnesses, the treatment of addiction is not standardized,” Menzies says. Contact the National Council on Alcoholism and Drug Dependence to find services near you, then interview providers about their programs.
“If you don’t have a clear strategy to protect these patients, you have an unacceptably high rate of relapse,” Menzies adds. Ask the treatment center if they offer medical detox and cognitive counseling, and how they help the child avoid relapse after he or she returns home.
The best treatment, of course, is prevention. Menzies says too many parents fail to educate children about the risks of heroin and other drugs. Counting on schools to take the lead is also a bad strategy, he says. “I’m shocked at how many school nurses and counselors don’t know anything about heroin.” That may explain why fewer 12 to 17 year olds today view using heroin once or twice a week as a ‘big risk’ than this age group did in 2009.
“Heroin is here to stay,” Menzies says. “The more parents learn about it, the better. Talk to your youngsters by age 14 about the dangers. Also, assure them that you love them and, if something happens, they can come to you right away.