Looking at 5-year-old twins Axel and Barrett today, you’d never guess everything they went through, even before they were born. But when Erin and Andy, the twins’ parents, look at their kids, they can still see how their early months of life impacted their boys.
For example, in the family’s home in Hudson, Wisconsin, Barrett enjoys snuggling close to his family and tight squeezes – what Erin thinks of as a remnant of his early days in the neonatal intensive care unit (NICU), and even when he was in the womb and had less space than his brother. Axel, on the other hand, sprawls out.
Early diagnosis of twin to twin transfusion syndrome
Early in her pregnancy, Erin found out that her babies were monochorionic, or identical, twins, which means they shared a placenta though they had two separate sacs. Erin was first referred to the Midwest Fetal Care Center (MWFCC), a partnership between Allina Health and Children’s Minnesota, for standard genetic testing and an anatomy scan.
When Erin went into her 16-week appointment, she had an anatomical scan and the family got their first glimpse of who they would fondly call, Baby A and Baby B.
The scan showed that the boys were different sizes because of how they were getting nutrients from the placenta. Axel was getting all of the nutrients, while Barrett wasn’t getting enough.
That is when Erin met the care team that would guide her through her pregnancy and NICU experience. The team included Dr. Saul Snowise, the medical director of the MWFCC, and Shukri Jumale, now program manager at MWFCC, who she would form a close bond with as she supported in coordinating her care.
Erin sat down with Dr. Snowise, who explained that the boys had twin to twin transfusion syndrome (TTTS), a condition that develops in approximately 10-15% of identical twin pregnancies. Because the babies shared a placenta, they also had connecting blood vessels. While usually blood flow is equally balanced between them, TTTS means the flow of blood is unbalanced and one baby will actually donate blood to the other.
“Early detection of TTTS and close monitoring are critical to determining the appropriate management. If left untreated, TTTS can lead to severe complications for both twins,” explained Dr. Snowise. “Being diagnosed with a condition like TTTS can be really scary for families, but we are able to assure them that at the MWFCC they’re in the best hands. The 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 so that we can give babies the best possible chance to not only survive but thrive.”
Close monitoring and fetal intervention
Because of their diagnosis, Dr. Snowise explained to Erin that Baby A and Baby B would be monitored closely. 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. The minimally invasive procedure uses a laser to close off the connecting blood vessels on the placenta that are contributing to the unusual flow of blood between the babies.
The surgery was a success, and helped the boys get the right amount of nutrients so they could continue to grow. After surgery, Erin was monitored even more closely by the team at the MWFCC. Her care team was watching for signs of preeclampsia or any signs of early labor. Around 28 weeks, Erin was put on bed rest, and at one point spent a week at The Mother Baby Center, a partnership between Allina Health and Children’s Minnesota, under close supervision of the team until it was time to deliver the babies. Erin had a C-section on May 3, 2019.
After they were born, Baby A and Baby B became Axel and Barrett. 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 neonatal intensive care unit (NICU) at Children’s Minnesota, both receiving breathing support in their earliest days and Axel receiving treatment for his jaundice.
Looking back at her experience at the MWFCC, Erin describes: “It was awesome. It really was. Between the perinatal clinic, Shukri and my social worker, they make sure you’re prepared for whatever is to come, even though the news you’re hearing is daunting and shocking.”
“During the process we learned about what could happen, what was possible and different options available. It was a lot and we were never rushed,” described Andy. “When the emergency day came and the operation needed to be performed, they were able to pull together a large team of people like nobody’s business and within an hour my wife was in the operating room with the best in their field.”
The twins thrive
In September 2024, Axel and Barrett entered kindergarten, and their parents couldn’t be more thrilled with their progress.
“They’re awesome, funny and crazy,” said Erin describing her kids. “They both have equal amounts of spice to them, but they have two totally different personalities.”
“We will be forever grateful to the team [at the Midwest Fetal Care Center],” said Andy. “Our boys are in kindergarten this year and so smart and healthy. What the clinic did for our family was unbelievable. What they are capable of is amazing!”
