Looking at 5-year-old twins Axel and Barrett today, you’d never guess everything they went through, even before they were born. Their journey started with a rare twin-to-twin transfusion syndrome diagnosis, weekly monitoring and in-utero surgery, followed by being born at just 29 weeks and a 30-day stay in the neonatal intensive care unit (NICU).
Early diagnosis of twin–to–twin transfusion syndrome
Early in their pregnancy, parents Erin and Andy found out their babies were monochorionic-diamniotic twins, meaning they are identical and share a placenta but have two separate amniotic sacs. About 75% of all identical twins fall into this category.
They were first referred to the Midwest Fetal Care Center (MWFCC), a partnership between Allina Health and Children’s Minnesota, for genetic testing and an anatomy scan. When Erin went into her 16-week appointment, the anatomical scan showed that the boys were different sizes because of how they were getting nutrients from the placenta. Erin and Andy met with Saul Snowise, MD, the medical director of the MWFCC, and Shukri Jumale, MSN, RN, now program manager at MWFCC, who explained that the boys had twin-to-twin transfusion syndrome (TTTS), a condition that develops in approximately 10-15% of identical twin pregnancies.
In TTTS, the flow of blood becomes unbalanced, and one baby will actually donate blood to the other. The “donor” twin becomes dehydrated and stops making urine. This results in a decrease in amniotic fluid. The “recipient” twin, however, becomes volume overloaded and produces higher-than-normal amounts of urine, resulting in excess amniotic fluid.
“Close monitoring of monochorionic twins that allows early detection of TTTS is critical as it leads to timely management of this potentially lethal condition. If left untreated, TTTS can result in the loss of one or both babies in up to 90% of cases. The donor twin may experience much slower-than-normal growth, while the recipient twin is at risk of heart failure due to the extra volume of blood,” explained Dr. Snowise. “Our prenatal management of babies with TTTS centers on monitoring the babies frequently with high-resolution fetal ultrasonography. This testing allows us to measure the amount of amniotic fluid and assess how well blood is flowing within the babies’ umbilical cords, as well as within other blood vessels.”
In high volume fetal therapy centers in the United States, about 70% of pregnancies treated for TTTS end with two healthy babies.
Fetal intervention
Because of their diagnosis, Erin would come in for weekly check-ups to monitor the babies’ blood flow and see how they were developing. Ultimately, at 21 weeks and 5 days, the team knew they had to intervene because the condition was beginning to severely impact the twins.
Dr. Snowise and the team at MWFCC performed a fetoscopic laser photocoagulation. This minimally invasive surgery uses a laser to ablate blood vessels that are contributing to the abnormal flow of blood between the babies. Many studies have demonstrated that this procedure is the most effective therapy for babies with advanced TTTS. The surgery was a success, and helped the boys get the right amount of nutrients so they could continue to grow.
Multidisciplinary monitoring
After surgery, Erin was monitored closely by the team at the MWFCC to watch for signs of recurrent disease or early labor. Around 28 weeks she was admitted to The Mother Baby Center, a partnership between Allina Health and Children’s Minnesota, until it was time to deliver the babies. The Mother Baby Center is one of only a few centers nationwide with the birth center located within the hospital campus. This means that babies are born just a few feet down the hall from our NICU.
Erin had a C-section on May 3, 2019. Axel was born weighing 4 pounds, 10 ounces; while Barrett was born weighing 2 pounds, 11 ounces. The boys spent 30 days under the watchful eye of the NICU at Children’s Minnesota, both receiving breathing support in their earliest days and Axel receiving treatment for his jaundice.
The twins today
In September 2024, Axel and Barrett started school and their parents couldn’t be more thrilled with their progress.
“We will always be grateful to the team [at the Midwest Fetal Care Center],” said Andy. “Our boys are in kindergarten this year and are so smart and healthy. What the clinic did for our family was unbelievable. What they are capable of is amazing!”
About fetal intervention
The Midwest Fetal Care Center (MWFCC) brings together a multi-disciplinary team of highly trained maternal-fetal medicine experts from Allina Health and pediatric and neonatal specialists from Children’s Minnesota. Open since 2008, the MWFCC is a national referral center and regional leader in fetal diagnosis, fetal intervention and comprehensive fetal care for unborn babies with complex conditions.
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