Bend Senior High School
TAR Syndrome
Club's City, State:
Bend, OR
Service Hours:
Date Adopted:

Meet Elaine

Read Elaine's Story

Before Elaine was born, her parents were anxiously awaiting her arrival, and all the pre-natal checkups went well up until the 20-week appointment.

Her parents then learned some differences in baby Elaine’s development would need some specialist’s attention after she was born. They were still so grateful for their little girl and couldn’t wait to meet her.

Ultrasounds showed that the ulna bones in each of Elaine’s arms were there but were very short and she was completely missing the radius bone in both her arms.

Her parents also learned that she had extra heart valves, but those weren’t affecting the functioning of her heart at that time. Doctors also found that her kidneys were rotated a little, but there were no complications to worry about at that time.

Her parents knew that Elaine would need to be born at the hospital in Portland where specialists could attend to her due to her medical issues.

At Mom’s last doctor’s visit before the birth, an MRI was done to better see exactly what baby Elaine’s pre-birth condition was. The MRI showed that there was fluid around Elaine’s brain. It was a cyst that may require surgery in the future. It’s been quite a journey for this little girl who hadn’t even been born yet!

Elaine was born at OHSU on July 19, 2023, and was in the NICU for a few days before being transferred to Doernbecher Children’s Hospital.

Elaine was diagnosed with TAR Syndrome which means she does not have enough platelets in her blood, so she requires blood transfusions regularly. She bruises more easily and faster than most people.

Elaine received a feeding tube in late September as she had trouble gaining weight after birth. With the tube, she slowly grew and became stronger.

In early November Elaine went back to Doernbecher for surgery to place a Hickman port on the right side of her chest. The port will make it easier for her parents to care for her and allow them to give her submergible baths.

Elaine is a sweet and good-natured baby girl. She smiles all the time despite her everyday struggles, constant hospital visits, and unpleasant procedures.

Elaine will be adopted as a Sparrow to Bend High School. Bend Lava Bears will work hard to raise money for Elaine through sponsored community service.