GRAND FORKS — Their baby is nine months old and can already pull himself up to a wobbly stand, but a Grand Forks couple only recently made an official announcement of his birth.
It’s taken a while to fully grasp the fact that their son’s identical twin brother died in utero as a result of an unusual condition.
RaeAnn Anderson and Justin Venkatsammy have been overwhelmed by intense joy and sorrow.
“Our birth plan included cremation,” Anderson said, referring to their preparations to celebrate and mourn at the same time.
They look at little Rafael now and picture Xavier as a mirror image had he survived. They wonder about the personality differences that would be emerging.
“I'm never going to know what those are,” Anderson said, her voice choking with emotion.
During pregnancy, the babies developed twin-twin transfusion syndrome, which causes one twin to receive more blood from the placenta at the expense of the other.
The condition affects identical twins only, in 10% to 15% of those pregnancies, according to Midwest Fetal Care Center of Children’s Minnesota.
About half of the pregnancies treated for TTTS result in two healthy babies. Nearly 90% of the time, at least one baby will survive and be healthy.
Anderson’s case came on abruptly, and at 20 weeks gestation, she needed emergency surgery in an attempt to save the twins, whose hearts were failing.
Rafael survived, but Xavier died, and his body remained in the womb until Anderson gave birth four months later.
A small chance
The couple met in college in Kansas at a party neither wanted to attend. Anderson was attempting to avoid a man who was making her feel uncomfortable when fate intervened.
“She turned to the nearest person, and that was me, and we started talking,” Venkatsammy said.
They ended up dating for six years and married in 2012.
While Anderson was pursuing a doctorate degree, the two lived in Wisconsin, Michigan and Ohio before settling in Grand Forks in June 2018.
She was hired as an assistant professor of psychology at the University of North Dakota, and he found a job with Dawson Insurance.
Around that time, they learned Anderson was pregnant.
The couple had always wanted two children and were thrilled to learn later that she was carrying identical twins. Wary about pregnancy in general, Anderson was relieved at the thought of only having to go through it once.
Doctors informed them about the small chance of twin-twin transfusion syndrome.
“They let us know that it was always a possibility at the beginning. There was always some risk involved,” Venkatsammy said.
They didn’t dwell on it, though, because of the relatively low risk and because the condition can often be mitigated with surgery.
All signs looked normal at Anderson’s regular obstetric appointment on Oct. 31, 2018.
Less than a week later, the couple received bad news after a TTTS screening with a maternal-fetal medicine specialist.
The condition had developed suddenly and advanced quickly, already reaching stage three out of four stages, the last of which involves congestive heart failure.
The couple was referred to a Twin Cities facility, and Anderson was scheduled for emergency surgery the next morning, Nov. 6, 2018.
During the minimally invasive procedure, a laser was used to seal blood vessels in the placenta that were contributing to the abnormal flow of blood to the babies.
Rafael was deemed less likely to survive because he was the so-called “donor” twin, in effect donating blood to his brother.
But it didn’t turn out that way.
“His brother’s sacrifice allowed him to be born healthy,” the family wrote in Rafael’s recent birth announcement.
Rafael weighed 5 pounds, 7 ounces when he arrived by Cesarean section at 37 weeks gestation on February 27, 2019.
“Until I saw him, I just didn't quite believe it was actually going to happen,” Anderson said.
Rafael spent four days in neonatal intensive care before going home with his parents.
Meanwhile, Xavier’s remains were cremated following the birth. A memorial service and tree planting will be held in Grand Forks sometime in 2020.
Rafael means 'healer'
His parents said Rafael loves to explore, crawl and scoot across the living room in his walker.
RaeAnn’s mother, Sara Anderson, cares for her grandson when his parents are at work, and she describes him as a little go-getter.
“He sees something, he focuses on it and just goes for it,” she said.
The couple’s experience made them see things they might not otherwise have realized.
Anderson would like people to remember that pregnancy can be unpleasant, difficult and traumatic for some women.
During the last four months of her pregnancy, she knew one baby was gone and the future of the other was uncertain.
“People would come up to me and kind of assume I was ecstatic and everything was great (but) no, not great all the time,” Anderson said.
Both parents have gone through therapy, and Venkatsammy wishes he had done so earlier.
“Counseling helped a lot,” he said.
They said the name Xavier means "savior," while Rafael means "healer" — and their son has been fulfilling that role ever since he arrived.