Brooke Whitaker remembers the day her daughter, Harlow, was born.
Harlow’s cry was loud and strong, even after doctors cautioned that a tumor in her lungs would require surgery. Harlow was big and healthy, even after doctors worried that she wouldn’t be. But that was Harlow – a fighter from the beginning.
Brooke held Harlow in her arms for the first time on Jan. 4, 2022, and became a mother.
“That’s the best memory I could have,” Brooke said.
Brooke is holding onto that memory tightly as she prepares for Harlow’s funeral Saturday at Moses Baptist Church in Thibodaux. Harlow passed away June 4 from Sudden Unexpected Death in Epilepsy. She was 4 years old.
About 1 in 1,000 adults with epilepsy and 1 in 4,500 children with epilepsy die from Sudden Unexpected Death in Epilepsy each year, according to the CDC.
Brooke said epilepsy affects everyone differently.
“Some people with epilepsy, they live to older ages, and some don’t,” she said. “I want people to be aware and become CPR certified. I just want them to educate themselves, learn that there’s different types of seizures.”
Brooke was a single mother to Harlow, who had complex needs. The two enjoyed dancing in the kitchen together, cooking meals at home, doing each other’s makeup, painting, eating ice cream and visiting the Gulfport Aquarium to see Harlow’s favorite exhibit: the dolphins.
“I’ve been asking myself, ‘How am I going to do this every day without her?’” Brooke said. “It’s been me and her. Now it’s just me.”
Harlow loved Gabby Dollhouse. She had a terrific smile and a contagious, joyful laugh. She loved Humpty Dumpty so much that she once smashed eggs in the kitchen.
“You have to cherish those moments,” Brooke said. “You can clean your walls, but you can’t get your child back. Let kids be kids.”
Diagnosed with epilepsy at 6 months old, Harlow endured seizures, medically induced comas, surgeries and months-long hospitalizations. She was ultimately diagnosed with drug-resistant epilepsy, and, in April, she underwent vagus nerve stimulation (VNS) surgery to help control her seizures and improve her quality of life. About one month after the surgery, Harlow suffered cardiac arrest, but she improved enough to return home earlier this month.
Doctors were working to get a home health nurse approved for Harlow days before she suffered a seizure at home and lost consciousness. After Brooke found Harlow in her bedroom face down, she called 911 and performed CPR.
The EMS medic who arrived was someone Brooke and Harlow knew well. John Macaluso had responded to other 911 calls to the family’s apartment after Harlow’s seizures. When Macaluso saw Harlow, it looked like his whole heart shattered, Brooke said. He jumped into action.
“He fought for her,” Brooke said. “Not just that day, but every time he came out. He fought for her.”
The St. Charles Parish Sheriff’s Office also responded to the call. Officers escorted the ambulance to the hospital.
“I just want to say thank you to all of them,” Brooke said. “Because we were at the hospital for a good four or five hours and officers stayed outside until we got out of that hospital. They gave me a hug and told me if I needed anything, they would be there.”
As she left the hospital, Brooke held onto a small cross that a nurse gave her. “Every day is going to be hard,” the nurse had told her. “But when you think of your baby, hold on to this.”
“That’s the only thing that’s been getting me through everything,” Brooke said. “Just making sure I have the cross she gave me. Because that was the same night that she passed. It’s a part of me.”
Brooke said she has received tremendous support from the parish community. Family, friends and other residents have donated and prepared meals for the family and helped with funeral decorations and expenses. Hundreds have reached out with prayers and messages of condolences.
The community is invited to Harlow’s celebration of life and encouraged to wear purple, the color of epilepsy awareness. When Brooke searched online for a purple dress, she noticed something unexpected. The dress she wanted to buy had a name: Harlow.
“I felt like that was a sign from her to let me know she’s okay,” Brooke said. “I’ve never in my life seen an outfit named Harlow. I said, ‘Okay Harlow, I’m going to wear this for you.’”
In the dress named Harlow, Brooke will read a poem as she lays her daughter to rest. She will remind the community of Harlow’s legacy: Be happy, love each other, and take one day at a time. You never know what the next day is going to bring.
“She’s such a happy little girl,” Brooke said. “She’s so joyful, and I am going to miss that so much. I want to keep her happiness alive.”