Erin Collins was 37 weeks and four days pregnant in 2019 when—after an agonizing 32 hours in labor—she gave birth to B.B., her stillborn son. It took her years to overcome the trauma of that day and come face-to-face with the illness that caused it: hemolytic disease of the fetus and newborn (HDFN).
The charity she eventually established, the Chasing Rainbows Foundation, offers compassionate support to mothers and families throughout North Carolina’s Outer Banks region who have been affected by HDFN and related conditions. It does this by providing education, teaching self-advocacy skills, helping families cope with the loss, and giving hope for subsequent pregnancies.
“When my son died, I was discharged with a bunch of papers. They sent me on my way, saying, ‘Good luck. Figure it out.’ Unfortunately, that’s the American healthcare and mental healthcare system we have,” she said. “I have a supportive family and good insurance, but I could not find somebody to give me therapy.”
Collins added: “This was one of the darkest days of my life, and I thought it was just so inhumane, and I don’t ever want anyone else to have to go through this.”
Collins spoke to Rare Disease Advisor—a sister brand of HDFN Companion—from Melbourne, Australia, where she and her husband, Tripp, are in the middle of a two-year work assignment. The registered nurse, who already had a son at the time of the loss, did have some early clues that her second pregnancy might be problematic.
Listen to the Rare Disease Advisor podcast with Erin Collins
At around 14 weeks, she was told following a routine screening that she had antibodies in her blood, but that it was nothing to worry about. Upon her request, the hospital repeated the screening at 20 weeks and nothing came up. Sadly, that screening failed to detect the presence of anti-c. After the D antigen, anti-c is clinically the most important of the 49 known antigens in the Rh blood group system, which determines whether blood is compatible.
“The Rh antigens are highly immunogenic, meaning they can stimulate a strong immune response. My son and I were not compatible, leading to antibodies that caused his fatal anemia,” Collins explained. “Needless to say, it was traumatic and horrible. When he came out, we had a blood test done and the little c antibody was detected at a level that stated ‘too numerous to count,’ which told us that this antibody was responsible for his demise.”
Further testing at Johns Hopkins Medicine in Baltimore, Maryland, revealed anti-c had led to HDFN, which caused her baby’s death from anemia. Genetic testing of her husband showed that Tripp was also homozygous for anti-c, she said, “which told us that 100% of our subsequent pregnancies would be affected by little-c antibody, because our blood was incompatible.”
Despite her medical training, Collins had never heard of HDFN before.
“All I had learned in nursing school and had ever been exposed to with other moms was the RhoGAM shot, which helps specifically with Rh,” she said. “I didn’t realize—and nobody had told me—oh, there’s Kell, there’s little c, there’s big c, there’s little d. I mean, the list goes on of these rare antibodies that can cause HDFN to exist in subsequent pregnancies.”
A lifelong runner, Collins decided to channel her grief into something constructive: creating a nonprofit that would raise money to improve the level of care for those affected by HDFN.
“I was in North Carolina and had to travel to four states to see somebody who was familiar with the disease and could diagnose it, and then send me to the appropriate person for care for my following pregnancy,” she said. “It took a little over a year to find somebody that knew what was actually going on.”
According to the NC Health News website, in 2022 there were about 21,000 stillbirths from all causes nationally—including HDFN—and 708 in North Carolina alone.
“It’s just tragic hearing these numbers,” Collins said. “Initially, when I was affected, I delved deep into looking at the standard of care, and I just was blown away that there was no standard of care. We need to have a change, or at least reevaluate why it’s being missed so much.”
In 2023, Collins organized a Chasing Rainbows 5K race as part of Pregnancy, Infant, and Child Loss Awareness Month—so designated by President Reagan in 1988. The race, held in Kill Devil Hills, North Carolina, attracted more than 100 people and raised $6500 for the Maternal Alloimmunization Foundation and a local group, OBX Mommy and Me.
Chasing Rainbows repeated the charity run in October 2024, with Collins organizing the event remotely from Australia. Proceeds this time went directly to grief counseling for mothers who have experienced loss. A third 5K event is planned for October 2025.
A few years after their tragedy, the couple tried again to have a baby, and Collins gave birth to a girl, Eva, who was affected by the same condition. The infant received two intravenous immunoglobulin (IVIg) transfusions and one blood transfusion and was followed by hematologists for 6 weeks after her discharge from the neonatal intensive care unit.
“It was touch and go at times. She was under the bilirubin lights pretty much 24/7 and was completely discharged from hematology when she was about 10 weeks old,” said Collins, adding that today, Eva is a healthy 3-year-old.
“I think it’s very important for people to realize that they need to monitor these babies appropriately, especially after a hospital stay,” she said. “My number one goal is to show people there’s hope,” she said. “Even if you’ve gone through a loss and you feel like you can’t go on, don’t give up.”
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