Pregnancy can be an exciting and also challenging time. Although rare, diagnostic testing can confirm a birth defect or other fetal abnormality. In these high-risk pregnancies, highly specialized and collaborative medical care, as well as education and counseling, are important to address complications that may arise with the mother or the baby—during pregnancy, through delivery and beyond.
Modern medicine has ushered in new advances in diagnostic and surgical treatment procedures for women whose fetus has been diagnosed with a birth defect. For certain abnormalities, physicians with expert training in various specialties can perform interventional procedures, both to diagnose and treat the fetus while in utero. Fetal intervention is saving the lives of babies.
Common fetal health issues include congenital heart disease, genetic disorders and spina bifida. Less common conditions include hydrops fetalis (too much fluid in the baby’s tissues or surrounding internal organs) and twin-to-twin transfusion syndrome or TTTS.
During their second pregnancy, Heather and Adam Hanson learned they’d have identical twin boys. It was a big surprise, but a welcome one.
Things changed, though, when Heather learned at her 18-week ultrasound that one baby was significantly smaller than the other (9 ounces versus 12 ounces), and it was most likely because of a rare and life-threatening condition known as twin-to-twin transfusion syndrome.
TTTS occurs when there is an imbalance of blood flow between identical twins who share the same placenta. It’s only found in about 15 percent of these pregnancies, and was unusual enough that Heather’s OB/GYN didn’t know where to find treatment.
“We were so excited to be having two more boys,” recalls Heather, who also has an older son named Eli. “After that 18-week ultrasound, things really shifted. We went from happy to confused and scared.”
Feeling unsettled and unwilling to sit back and do nothing, Heather went to the Internet and came across the TTTS Foundation website. She learned that not only was treatment available for the condition, but that the very first TTTS surgery in the nation was performed in Milwaukee—just 100 miles south of her.
Heather contacted the Fetal Concerns Center of Wisconsin, a joint effort between Children’s Hospital of Wisconsin and Froedtert and the Medical College of Wisconsin. Although the specialist who performs TTTS surgery was out of town, Heather did not have to wait long to talk with him.
“The nurse told me on a Friday that I’d hear from him over the weekend, but I wasn’t sure I believed her,” Heather says. “I was surprised when my phone rang on Saturday night and the doctor spent nearly an hour explaining TTTS and answering my questions. He recommended that I stay in a prone position and schedule an appointment in his Milwaukee office on Tuesday.”
Heather and Adam entered the Fetal Concerns Center of Wisconsin with trepidation, but ultimately felt relieved. “I learned that I was seeing one of the nation’s leading TTTS physicians,” Heather says, “and that doctors at this center have experience using TTTS surgery to save the lives of babies from across the U.S.”
While the doctor told Heather her condition wasn’t severe enough to treat right away, he cautioned that things could change quickly. He advised bed rest and a twice-weekly trip to Milwaukee for ultrasounds.
Fortunately, a few weeks after that, Fetal Concerns Center program director Randall Kuhlmann, MD, began seeing patients in Appleton. Heather could now get her care close to home.
During her very first visit with Dr. Kuhlmann, the ultrasound showed a change. The doctor immediately contacted his colleagues at the Fetal Concerns Center and arranged for Heather to have TTTS surgery with the babies at 21 weeks gestation.
“We didn’t want to look back on our decision and have regrets about not trying,” Heather says. “Even if we didn’t have a positive outcome, we at least did everything we could to help our children.”
The Hansons elected to have the laser surgery which would seal off the shared vessels. That day, supportive, waiting family members grew anxious for updates in the waiting room. They breathed a sigh of relief after learning the procedure went well, but knew the next 24 hours were the most critical. They wouldn’t know until the next day’s ultrasound whether both babies had survived the surgery.
“Initially, it was hard to find two heartbeats, but soon they did,” Heather says. “We were so relieved and so very happy to have made it through that hurdle.”
After a few nights in the hospital, Heather returned home and followed up with weekly ultrasounds and growth measurements. The hope was to get the twins to at least 26½ weeks gestation, with an ultimate goal of 32 weeks. All the while, Heather remained on bed rest.
At 29½ weeks, Heather went into labor and spent seven days on hospitalized bed rest before giving birth to beautiful twin boys—Evan Richard and Owen Carl. Following a 9½-week stay in the neonatal intensive care unit, Heather and Adam were able to take the boys home. Evan came home on his original due date, and Owen came home the next day. With Evan at 5 pounds, 15 ounces, and Owen at 8 pounds, 8 ounces, the babies faced remarkably few complications. Today, like most 16-month-olds, they happily climb, giggle and play with their big brother.
Nancy Wojciehowski has been an RN for more than 30 years, focused primarily on improving care for at-risk mothers and babies. She manages the Fetal Concerns Center of Wisconsin at Children’s Hospital of Wisconsin.
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