Annelizabeth’s story: Care that feels like home, close to home

sickle cell WalthamWhen you’re 5, it’s nice to have a place that feels like a second home. Where there are lots of hugs. And songs. And games. And you can curl up and watch “Frozen,” your favorite movie.

For Annelizabeth Jean-Baptiste, a spunky Waltham kindergartener, that place is Boston Children’s Hospital at Waltham.

Annelizabeth, or Annie (but never Anna, she says), first came to Boston Children’s at Waltham two weeks after she was born.

Her mother Elcie wasn’t expecting that her fourth child would need special care. “It was a difficult pregnancy. I was very excited and relieved when she was born.” But that sense of relief turned to surprise shortly after Annelizabeth’s birth.

She tells me, ‘Mommy, I’m a big girl. I’ll go by myself,’ when it’s time for her blood draw.

Elcie had undergone prenatal screening for sickle cell disease, and her baby had tested negative.

After Annelizabeth was born, her first test for the disease was positive. Her second test also came back positive, and Annelizabeth’s pediatrician referred the newborn to Dr. Rachael Grace, a hematologist at Boston Children’s.

“Dr. Grace explained what sickle cell disease meant. I hadn’t known before,” says Elcie. Grace sees patients twice weekly at Boston Children’s at Waltham, allowing the Jean-Baptistes to stay close to home for Annelizabeth’s ongoing sickle cell care.

Charleen Colleran-Lombardi, a social worker at Boston Children’s at Waltham, is an important part of Annelizabeth’s care team, too. She’s been by Elcie’s side since Annelizabeth’s diagnosis was confirmed, helping Elcie and her husband Maguerre manage their daughter’s care.

“We started learning everything we could about sickle cell disease. It’s so hard when they are little babies and can’t tell you they are in pain,” says Elcie.

What is sickle cell disease?
Sickle cell disease is an inherited blood disorder, affecting primarily children of African descent or Hispanics of Caribbean descent.
Red blood cells are shaped like sickles or C’s, instead of O’s. These misshapen cells can clump together, creating blockages and obstructing the flow of oxygen to tissues and organs. Symptoms of sickle cell disease include pain crises and anemia, and children with sickle cell disease are at risk for stroke.
Babies and toddlers with sickle cell disease need specialized care, says Grace. Their risk for infection with normal illnesses is higher than healthy babies because their spleens don’t work properly.

When Annelizabeth developed a respiratory illness at six months old, her fever spiked, and the Jean-Baptistes rushed her to Boston Children’s Boston campus. She was treated with IV fluids and antibiotics.

At age 2, she suffered her first pain crisis in her legs.

“We couldn’t touch her. She pushed us away,” recalls Elcie.

They rushed her to Boston Children’s Boston campus, where she was treated right away.

Sickle cell disease and stroke risk

When Annelizabeth was 3, she underwent a screening test, available at Boston Children’s at Waltham, called a transcranial Doppler ultrasound. “All children with sickle cell disease have this screening test. An abnormal test predicts a high risk of stroke,” explains Grace. Annelizabeth’s screening test was abnormal, and when the test was repeated, the second result was also abnormal.

She needed monthly blood transfusions to normalize her blood flow and reduce her stroke risk.

Today, life is much easier for the Jean-Baptiste family. Elcie and Maguerre have learned about sickle cell disease, and Annelizabeth can tell her parents when things hurt.

sickle cell disease

Every month, Annelizabeth and Elcie, and sometimes brothers Daniel and Ezra or sister Sarah and sometimes all four siblings, travel the few short miles to the Infusion Clinic Boston Children’s at Waltham for Annelizabeth’s blood transfusion.

Learn more about community-based care at Boston Children’s at Waltham.

“Her transfusion takes about three hours, but it’s like a game to her. She tells me, ‘Mommy, I’m a big girl. I’ll go by myself,’ when it’s time for her blood draw,” says Elcie.

Elcie continues, “She get excited to go to the hospital. I think it’s because everyone here is so nice, and they make kids feel like they’re at home. It’s comfortable.”

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Meanwhile, Annelizabeth’s adventures in the Waltham community are continuing and bringing her to other new places. Kindergarten starts at Plympton Elementary on August 30. Annelizabeth is excited to ride the bus and make new friends. Elcie is excited for her little girl, and Charleen is watching as well. “I’ve known her since she was a baby. She’s grown up here,” says Charleen.

Her new school might be another home away from home for this Waltham girl.

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