Daniela’s Story | Beta Thalassemia Intermedia | Center for Cancer & Blood Disorders
Daniela’s start in this world wasn’t an easy one. She lost her twin sister in the womb and had a tough start in life, suffering from what her parents first thought was colic and abdominal problems. But what appeared to be a GI issue was actually something much different: Daniela had a life-threatening condition that was caught in the nick of time.
“We ended up at Connecticut Children’s through a referral by our birth-to-three consultant. Our pediatrician completely missed the symptoms and diagnosis,” said Dan, her father. “Daniela was seen by Dr. Sayej who was so compassionate and caring. He requested a full blood panel on Daniela and several other tests. That same night we got a call telling us to take Daniela to the Emergency Department immediately! The doctors couldn’t even believe she was conscious because we found out her hemoglobin was so low.”
“She was close to heart failure and we didn’t even know it. Her spleen and liver were completely swollen and enlarged. If not for Dr. Sayej’s thoroughness we may have lost Daniela that night,” Dan recalled.
Turns out, Daniela was born with a chronic and deadly blood disease called Beta Thalassemia Intermedia. Although the condition is manageable, it is life changing and will require numerous doctors’ visits, blood transfusions and therapies throughout her life.
“It obviously hurts and scares us all, but it also brings everyone closer. She’s at Connecticut Children’s several times a week, so it really affects out schedules, time and finances, but the entire staff has been amazing,” Dan said.
Currently, Daniela receives blood transfusions every 3 weeks and will likely need a splenectomy by age 6. Even so, she handles every procedure like a trooper and is feeling so much better these days.
“It’s like we have a new kid. She’s gained weight and is walking and talking and eating like she should have been all along,” Dan said. “She has basically caught back up to other kids her age even though she has this condition.”
“The bottom line is when a child does not look well, we have to trust our clinical judgment and trust parental instincts,” said Dr. Sayej. “Doing the most basic test led to getting Daniela the proper care she needed.”