By Daisha Dillon, 31, is six months pregnant and couldn’t be happier. She has always wanted to be a mother, but she was told that she couldn’t conceive because she has sickle cell disease.
“The pain I experience from sickle cell is shocking and feels like someone is stabbing you, abruptly and repeatedly,” said Dillon. “One of the stigmas for sickle cell patients like me is I was told my whole life I can’t have kids. It will just be too painful.”
But Dillon is pushing back against this misconception to show women with SCD that they can have a healthy pregnancy. She says she wouldn’t be where she is today without the help of the doctors and nurses at UConn Health’s Women’s Center in Farmington, CT.
“UConn has really helped me to turn the tides and overcome barriers to motherhood,” Dillon explained with joy. “Sickle cell does not define me or me as a person. There’s more to me than sickle cell!”
Black women are already more than three times as likely to die of complications during childbirth compared to white women. Having SCD only complicates the matter. The CDC says that women with sickle cell disease can have a healthy pregnancy with early prenatal care and careful monitoring throughout the pregnancy. However, women with SCD are more likely to have problems during pregnancy that can affect their health and that of their unborn baby.
Dillon has experienced debilitating symptoms commonly associated with SCD, including chronic pain, for most of her life.
At age 18, she transitioned from Connecticut Children’s pediatric sickle cell care program to the adult comprehensive care program at the New England Sickle Cell Institute at UConn John Dempsey Hospital led by Dr. Biree Andemariam.
Giving birth never seemed like an option for Dillon until she talked to her doctors. She credits the team at UConn with helping her through this difficult transition.
“UConn came up with my adult treatment plan and has always made me feel extremely confident in their care,” she added. “My patient experience has been wonderful! They treat me with respect, allow me to make my care decisions, and also manage not only my sickle cell care needs but other conditions I face too.”
Dillon says she was focused on protecting her unborn child while coping with her symptoms. Managing treatment for SCD while pregnant can be a challenge.
“This is my first baby and I never would want anything to hurt my baby such as the pain medication I need to take for my sickle cell pain,” she said.
Dillon is especially grateful to Dr. Genice Nelson. “Dr. Nelson is one of the people in my corner the entire time giving me not only medical advice but life advice as well.”
The team at UConn eventually came up with a solution to Dillon’s pain to help her through her pregnancy.
Before getting pregnant, Dillon started taking Adakeo, a new IV sickle cell drug administered once a month. The medication has drastically reduced her monthly pain episodes and hospitalization needs. The medication works by targeting a protein to prevent her misshaped red blood cells from becoming sticky and blocking her blood vessel blockages, which causes her pain. Dillon says the treatment dramatically improved her quality of life.
June 19 is known as Sickle Cell Disease Day in the United States, and Dillon is using the occasion to raise awareness about what it’s like to have the disease and to remind women with SCD that anything is possible.
“Never give up,” Dillon said. “Only you can write your future and set your goals. Sickle cell is just a disease, nothing else.”
“I am not the first person with sickle cell disease to have a child, and I won’t be the last!” she added. “I hope we can raise more awareness of sickle cell disease, and with greater awareness comes more advances in care. I do pray there will be a cure someday so we all can have long lives, careers, and the stigmas of sickle cell disease stops.”
Dillon is expecting a baby girl, due in the fall.
“My biggest hope for my baby girl is that she grows up to be big and strong – and is a healthy, healthy baby!”
