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CT woman with painful, life altering disease relies on faith, ‘perseveres’ to have a baby
Hartford Courant - 9/26/2022
When she was younger, Daisha Dillon was told she couldn’t have a baby. Or that it would be dangerous to get pregnant. That she could put her life or her baby’s at risk.
Dillon has sickle cell disease.
Despite the warnings, Dillon gave birth to Kinley Dillon on Aug. 19, a healthy girl who does not have sickle cell disease, although she does have one of the associated traits.
Dillon has the New England Sickle Cell Institute at UConn Health to thank, but, even more, she can be proud of her own courage and willingness to do what it took to have a baby.
“They really worked with me,” she said of the staff at NESCI. “And to be honest, I had an amazing pregnancy. It was hard sometimes, but to sum it up altogether, I will say it was great, you know, for someone like me that has sickle cell.”
Dillon said it took a lot for her to decide to become pregnant.
“Growing up, I always heard since I had sickle cell I couldn’t have kids,” she said. “It wasn’t good for me to have kids. And if I did have kids I would have to have a C-section; it would send me into a pain crisis. I’ve heard all this stuff.”
“They’re oftentimes discouraged by their physicians as well as their family members who love them that are worried about their health to not have children,” said Dr. Biree Andemariam, founder and director of NESCI, whom Dillon met when she was 17. “So, you know, it takes a bit of courage and resilience to push on and have a baby despite being told that you’re taking significant risks.”
Dillon said she felt some fear, but she went ahead because of her lifelong dream to be a mother and because of her faith.
“I know God is not going to put anything on me that I can’t handle, and if I pray about things and continue to serve him, it’ll be fine,” she said.
Dillon, 32, a Manchester resident, was required to get monthly blood transfusions throughout her pregnancy, and she had to deal with the “pain crises” that come with the disease, as well as chronic pain.
When she needed to go to the hospital, ‘I couldn’t go to the ER; I had to go to labor and delivery because they had to watch me and the baby,” Dillon said. “I was automatically a high-risk pregnancy. So automatically I had to go to the doctor more frequently than anyone else.”
She was also on Lovenox, a blood thinner that doesn’t pass through to the placenta.
“I had to shoot myself with a needle every day. Twice a day,” she said.
While the doctors had hoped to have Dillon deliver at 37 weeks, she developed preeclampsia, so she had her C-section a couple of days early. It would have been sooner, but she had to be off the blood thinner before they could deliver Kinley.
She stayed at John Dempsey Hospital for 24 hours, “and then they did the C-section the next morning,” Dillon said. “I had an amazing doctor who did it. She was awesome. The whole team was awesome.”
September is designated Sickle Cell Disease Month in order to increase awareness of the blood disorder, which affects mostly Blacks and Hispanics but also, to a lesser extent, groups such as South Asians and those from the Mediterranean.
The disease is characterized by misshapen red blood cells, which are flat and curved, resembling a farmer’s sickle, larger than a normal cell. They don’t carry hemoglobin well and will clog up small blood vessels, which can cause the pain crises associated with the disease.
Bone marrow transplants can cure the disease, but not many with sickle cell disease undergo the procedure, partly because of the risks, including infertility, dealing with the required chemotherapy, and because people with sickle cell can live for decades, Andemariam said.
Also, finding a donor who matches a sickle cell patient is difficult, she said. Parents often will defer the decision of having a bone marrow transplant for their child until the child can make the decision for herself, she said.
Another technique, now in clinical trials, is gene therapy, in which the patient’s own stem cells are edited or corrected and returned to the patient. NESCI doesn’t do transplants at this point, Andemariam said, but is gearing up to do gene therapy once it’s approved.
Dillon said she met Andemariam in the hospital and talked to her about the specialized care NESCI could give her.
“I was able to ask her all the questions that I had, and she made me feel very comfortable about going to UConn,” Dillon said. “So when I did come over here, I felt very comfortable. And then when I got over here, it was even better. All the nurses were great.”
Genice Nelson, a doctor of nursing practice, also “has been really influential in my care,” Dillon said.
Andemariam said there are several risks for both the mother with sickle cell and her baby.
“There can be increased complications like something called preeclampsia, increased risk of preterm delivery, increased risk of low birthweight … an increased number of pain crises, an increased risk of a very serious lung complication called acute chest syndrome, an increased risk of being hospitalized during the pregnancy,” Andemariam said. Death of the mother is also a risk.
For the baby, premature birth and miscarriage are the main risk factors, she said.
Dillon said the idea of not being at NESCI is “scary” and that she has gotten healthier to the point of not having to go to the hospital as often.
“When I go to the ER now, people [say], ‘Oh my God, it’s been so long,’ rather than before, they think, ‘Oh, you don’t feel well again,’” Dillon said. “That feels good to put some spacing between hospitalizations and come in for regular routine doctor visits rather than come in for pain crises. Whatever we’re doing, it’s working.”
She credits her caregivers at NESCI for letting her know that she would be OK, even when she had to come off a medication during her pregnancy that helped her avoid pain crises.
They told her, “I’m not the first person to have a baby with sickle cell, and I’m not the last,” she said.
Andemariam said NESCI plays an important role in caring for patients with sickle cell disease.
“Research has shown us that your odds of doing well in pregnancy with underlying sickle cell disease are dramatically improved if you’re receiving care at a place where you have experts in sickle cell disease and you have experts in high-risk pregnancies,” Andemariam said.
“And this gets to her courage,” she said of Dillon. “This is her resiliency. She was going to do whatever it took to get that care.”
She said the center, staffed by “fantastic” nurses, social workers and assistants, has cared for almost 100 pregnant women, with no serious problems, offering blood transfusions, prenatal diagnostic testing and genetic counseling.
More help may be on the way, as a bill has been introduced in Congress to create a $535 million annual grant program to hospitals with sickle cell disease programs to expand services to community health and outpatient centers. Andemariam is on one of the councils that helped develop the bill.
Dillon has always wanted to be a mother, Andemariam said. “She actually shares a very special relationship and bond with her own mother, Carmen, who has always been by her side and supportive of her in everything that she’s done, and I can only see that Dashia will want to be able to replicate what Carmen has given to her to her own child.”
Since sickle cell is individualized — there are a number of variations of the disease — Dillon has a written and signed pain plan that she can present to any doctor if she has a pain crisis. It spells out the best treatment for her.
“It takes the guessing game out,” she said. “The doctor doesn’t have to ask you all of the questions. It’s all written down, ABC type of things.” If a doctor questions the plan, Dillon’s doctor’s phone number is there.
“It reassures me and reassures the doctor that a hematologist is watching me and she knows what she’s doing,” Dillon said.
As for Kinley, “She’s such a good baby. Honestly, I am blessed. … God is so good. I prayed because I do take pain medication. I thought that she would have withdrawal symptoms from the pain medication. And she had no withdrawal symptoms. She was born a happy, healthy baby. … When she wakes up she opens her eyes wide and looks at me. I know that everything’s going to be OK.”
Dillon said Kinley’s father keeps his privacy and doesn’t want to be named. She said he doesn’t have sickle cell or the genetic traits. They’re not married, but “hopefully there will be an engagement soon,” Dillon said.
Dillon works as care coordinator in the detox unit at InterCommunity Health Care in Hartford and is working on a master’s degree in social work, hoping to work with people with substance use disorder.
“Daisha, no matter how sick she has been, and she has been sick throughout her life, always perseveres,” Andemariam said. “She is always holding down at least two jobs. She is always taking care of herself, providing for herself. She was always a support to her family. So it doesn’t surprise me that she would have the courage to take the risk to try to accomplish one of her lifelong goals, which is to be a mother.”
Ed Stannard can be reached at firstname.lastname@example.org or 860-993-8190.
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