After Sickle Cell Crisis, Brooklyn Mother is Grateful to Be Alive

A frightening episode leads woman with sickle cell disease to specialized care at NYC Health + Hospitals/Kings County

While working as an office assistant in Brooklyn, Grace Carter felt her body grow weak and lose all sensation. Fearing she would collapse, she lay on the floor and became unconscious.

Grace was rushed to the Emergency Room at NYC Health + Hospitals/Kings County where doctors diagnosed her with sickle cell disease and determined she had suffered a sickle cell crisis.

She spent two months in the ICU, suffering two strokes, two heart attacks, multi-organ failure, sepsis, and early onset necrosis.

“I wasn’t looking good at all. I had no blood in my hands and my feet because when my body went into the crisis, it was like all my heart, my liver, my kidneys, shut down. I was at literally at death’s door,” she recalls.

Her condition was so severe that her care team and loved ones feared she would not survive.

But, with help from the expert Sickle Cell team at NYC Health + Hospitals/Kings County, Grace recovered.

Sickle cell disease is a genetic disorder that causes red blood cells to become stiff and sickle-shaped leading to anemia, organ damage, severe pain crises, and early death. It predominantly affects people of color, specifically those of Sub-Saharan African descent. The disease affects about 100,000 people in the U.S. and 10,000 in New York State.

A common feature of sickle cell disease is unpredictable episodes of searing pain, known as sickle cell crises. Patients with pain crises, like Grace, often go to the Emergency Room for treatment. However, with proper sickle cell disease care, providers can reduce the frequency and severity of these painful episodes, and help patients stay healthy and engaged in their lives.

NYC Health + Hospitals is one of the largest providers of sickle cell care in the country, with seven sickle cell clinics for pediatric patients and three sickle cell clinics for adults. Services include preventive medications, such as hydroxyurea, to reduce the risk of severe symptoms; preventive screening tests; pain management; and care navigation.

Learning that she had sickle cell disease was a shock for Grace. Growing up in Barbados, and later after moving to New York City at 18, Grace was mistakenly told that she only carried the sickle cell trait, not the disease itself.  

Dr. John Muthu, Physician Specialist at NYC Health + Hospitals/Kings County, said when he first met Grace in the ER, she was seriously ill due to multiorgan failure.

“Sickle cell disease is a multisystem disease and can affect a variety of organs in the body,” Dr. Muthu said. “After Grace recovered, she has been on treatment with hydroxyurea, and her sickle cell disease has been stable ever since.”

Grace said she is grateful to Dr. Muthu and the Kings County sickle cell team for saving her life.

“I just thank God that I am alive. I thank Him every day when I wake up,” she said.

Leaving the ICU marked the start of an intense recovery journey. Bedridden for two months with muscle atrophy, Grace underwent extensive therapy to relearn how to walk, speak, and manage daily life.

Beyond clinical care, Community Health Worker Abigail Chamberlain provided stability.

“Thank God I have my girl Abigail, who’s been following me from day one. Abigail is my go-to girl,” Grace says, hugging her.

Abigail helped Grace secure affordable blood-thinners and navigate assistance for disability, transportation, and housing. Grace also found solace in the Kings County sickle cell support group.

“The first support group that I attended, I never cried so much,” Grace recalls. “Every patient goes through something very tragic and they made it out. Everybody’s story is different,” she said.

Abigail said Grace has made remarkable improvements.

“Her speech has improved, and her mobility has significantly improved over the past year,” she said.  “It has been very encouraging to see her progress and to witness the changes she has made in her health and daily life.”

Grace continues follow-up care at NYC Health + Hospitals/Kings County, balancing appointments across hematology, cardiology, neurology, podiatry, physical therapy, and optometry. After being in the ICU for two months, ordinary moments like walking, speaking, and being home with her daughter Jasmine, now feel extraordinary.

She hopes to return to work, regain her independence, and watch her daughter grow.

“I’m just happy,” she says tearing up. “I’m most grateful for being alive and seeing my daughter and having her with me.”