FINDING STRENGTH FOR MOTHERHOOD

NADIA FULFORD

FINDING STRENGTH FOR MOTHERHOOD

Nadia Fulford was diagnosed with sickle cell disease very early in life, and she has spent all of her young life learning to live with it.

She had no choice, because there is no cure.

Even though she’s only 24, Nadia’s sickle cell disease makes her red blood cells stiff, twists them into a pointy sickle shape, and causes them to clump together to impede normal blood flow. The cells die early, leaving her short of healthy red blood cells.

Patients like Nadia suffer with infections, fatigue, and pain. They have a higher risk of stroke.

Treatments can help, but this is a disease that needs constant attention. When Nadia was a child, her mother would remind her to take the medications she needed, get her to the doctor for checkups, and bring her to Golisano Children’s Hospital for frequent stays.

Now Nadia is a mother to 4-year-old son, August. She’s taken charge of her life and her health.

It took her time to grow into this much responsibility. And it took courage: during her pregnancy, the illness caused blood clots to form around her lungs, putting her and her baby in danger. There were many trips in and out of the hospital. Not long after, when she was 21, Nadia’s pediatric hematologist, Craig A. Mullen, M.D., Ph.D., told her she would need to find an adult primary care practice. He recommended Tiffany Pulcino, M.D., M.P.H. at the Complex Care Center.

“It was hard because I had been going to him since I was little,” Nadia said. “He knew me; he knew my illness. Now I have to go to this new place, this new doctor… what if she wasn’t as nice as Dr. Mullen?” “It was scary going to see her for that first appointment. But she was there with open arms, and smiling, and she took time to get to know me before the ‘medical appointment’ part of it got started.”

Pulcino also noticed that Nadia was feeling discouraged and depressed, and put her in touch with a therapist for

support. She also gave Nadia her phone number and invited her to call if she needed anything. She’s been Nadia’s doctor ever since.

One of their first goals: helping Nadia build skills to manage her own care — including the more than two dozen pills she must take every day. Nadia learned to set alarms on her phone to remind her to take medicines.

At first, Nadia would miss some doses. “When I got hospitalized more and more because I was dehydrated or not eating, I realized I needed the antibiotics and other medicines to keep me healthy.”

Now that she’s in a good place with preventive care, she’s also learned how to be her own advocate so she can continue to work part-time and raise her son.

“When people are sick, I have to be extra careful around them. I have to make sure that wherever I go, I have enough meds, water, ibuprofen, Tylenol. I keep a thermometer with me at all times. It’s a lot to deal with and live with.”

She likes that Pulcino doesn’t tell her what to do — instead, she asks Nadia

what her life goals are, and together they come up with a plan to help her get there.

It’s clear that Nadia has learned to speak up for herself when dealing with doctors and the people in her life.

“I’m the one living with this sickness; I’m not a little kid anymore. I have a child of my own. This is my body, my health. I know what’s best for me.”

She’s also found confidence and has her eye on the future. She’s working in a restaurant, and making plans to go to cooking school.

“I’m really proud of myself. I have a son now, and I have to take care of myself if I want to watch August grow up. I still have this sickness — it’s my first ‘baby’ and it needs constant care. That’s how I look at it — I have to take care of the sickle cell ‘baby’ so I can be there for my real baby.”

The road from childhood to adulthood is not a fast or easy path for anyone, and especially not for someone with a lifelong illness. But Nadia has found her footing, and she’s on her way.

THE ROAD AHEAD

Pulcino and her colleagues have made great progress in just a few years. Here’s what’s ahead for the Complex Care Center and Transitional Care Medicine:

Expanding the ability to care. Like its patients, the Complex Care Center needs space and support to grow. It provides care to approximately 1,000 adults and is still open to new patients. But within the next year it expects to reach the capacity it can manage and still provide the level of care patients need. The team has added additional primary care providers, but needs more space to see more patients and expand its roster of services.

“We could do so much more clinically if we had more space,” Pulcino said. “We could help patients by adding infusion services and more specialty services, in addition to training the next generation of clinicians.”

Right now, collaboration with local agencies is extending the center’s reach. “By teaming up with local care coordination agencies from the Office of People With Developmental Disabilities, we are working to close non-health care barriers to patients’ well-being, such as transportation, employment, and housing challenges,” said Regina Dennis, the center’s manager of Community Care Management. A new transportation program the center offers helps patients make essential visits to pharmacies, community resources, and their benefits appointments.

Developing a more comprehensive transition plan for all pediatric patients. Every pediatric patient can benefit from a solid roadmap to take them from pediatrics to adult care. Transitional Care Medicine aims to develop consistent policies throughout the URMC system for hospital, inpatient and outpatient settings to help every child manage adult health care.

Access to outpatient care helps patients avoid illnesses that could require emergency treatment or hospitalization.

Another goal: strengthening the region’s network of caregivers via training and collaboration, said Amy Schwab Jerum, the Director of Workforce Development. “We can make a bigger impact by supporting the people who care for individuals with complex medical needs throughout our region,” she said. “Our goal is to create an environment where healthcare providers can access our resources to build their knowledge base and access best-practice approaches to care.”

Exploring the best ways to care for adult patients with complex needs, and sharing those discoveries. “This is a new area for health care,” Pulcino said. “It’s only been in the last five years in our region that the number of adult patients with childhood illnesses outnumbers children. We don’t have well-established plans for medications and treatments for adults. We are conducting research to advance our understanding of how these diseases progress in adulthood. In a sense we’re in unchartered territory, and we need to build the road as we go.”

“Our goal is to ensure that all our patients live their best life possible. We want to make Rochester a model for community and health system collaboration to close the gaps in care, and help children find a fulfilling and healthy path from childhood to adulthood.”