PostedMay 30, 2021 · 3 minute read
Shaye was forced to become an HDFN expert and advocate while still pregnant and navigating a new diagnosis.
By Taylor Kane
Shaye was 12 weeks pregnant when she went through the routine lab work that revealed the presence of antibodies in her blood. She would later learn that this was caused by her body’s exposure to red blood cells incompatible with her own - a rare condition known as “maternal alloimmunization.”
“My obgyn has been practicing for 30 years and I was his first case. He didn’t even really know how to describe it to me,” Shaye says.
If a woman has maternal antibodies and becomes pregnant with a fetus with an incompatible blood type, those antibodies can cross the placenta and destroy the fetus’ red blood cells, resulting in a condition called Hemolytic Disease of the Fetus and Newborn, or HDFN.
Maternal antibodies are either the result of a prior pregnancy or blood transfusion. In Shaye’s case, she had been pregnant twice before. HDFN may cause symptoms such as anemia, enlarged organs, or severe swelling in the fetus. After birth, babies with HDFN may experience anemia, excess bilirubin in the blood, jaundice, low white blood cell count or low platelet count. Some babies are mildly affected while others may face life-threatening complications.
When Shaye learned she and her baby were at risk for complications, she felt confused and devastated. Shaye explains that it was difficult trying to explain alloimmunization and HDFN to her husband, who wasn’t able to attend the appointment with her due to COVID precautions. “When I did get my diagnosis, I spent the first two days in bed crying,” Shaye remembers.
A few weeks after her diagnosis, Shaye met with an HDFN specialist in Atlanta who told her about the Allo Hope Foundation, a leading patient advocacy organization for mothers and children impacted by alloimmunization and HDFN. Shaye says she has learned a lot from the Allo Hope Foundation and has been able to meet other mothers who have gone through this journey. They have helped her feel more comfortable and prepared for the birth of her child.
“I love how social media can connect you with people that are going through the same thing and can help you,” she says.
Now, around 26 weeks pregnant, Shaye goes for weekly scans to measure the blood flow to her baby’s brain. Her maternal antibody score hasn’t been rising, but she knows that could change at any moment. She wishes medical professionals knew more about alloimmunization and HDFN, but since the condition is so rare, she has had to do a lot of the work on her own.
“With alloimmunization and HDFN, I’m having to do a lot of the homework and be my child’s advocate.”
Still, she feels very confident in her medical team and is lucky that she now has a specialist that understands the condition very well. She wants to help raise awareness of alloimmunization and HDFN so clinicians understand what tests and scans pregnant mothers need and when.
This is one of the reasons Shaye joined the AllStripes alloimmunization and HDFN program; to contribute her medical records to research. AllStripes collects all her records on her behalf, and makes them available in a secure account, then de-identifies the records and analyzes the information to drive research forward.
Though Shaye is still waiting for the birth of her baby, she already wants to give back and help her rare community. Thankfully, Shaye has her faith and a strong support system by her side. Her journey and perseverance are a testament to how by coming together we can make a difference in each other’s lives and for research.
If you or someone you know have been impacted by alloimmunization and HDFN, your experience is important and can help researchers advance treatments for your community. Learn more at allstripes.com/HDFN.