Born With Her Heart Outside Her Chest, Baby Marcela’s Parents Were Too Afraid to Hold Her

For most parents, holding their newborn baby for the first time is an unforgettable moment. But when Isabel and Edgar welcomed their daughter Marcela in Guatemala, they were frightened that even a gentle embrace might hurt her.

Their little girl had been born with an extraordinarily rare combination of congenital abnormalities, including ectopia cordis, a condition in which the heart develops outside the chest cavity.

Marcela also had an omphalocele, a defect in the abdominal wall that allows organs to protrude through the area of the belly button.

Her heart was dangerously exposed, and her parents initially feared that holding her could cause an injury.

A Frightening Beginning on New Year’s Eve

Marcela was born on December 31, 2020.

Doctors in Guatemala told her parents that they could not provide the complex treatment she needed.

The COVID-19 pandemic made the situation even more difficult. Isabel and Edgar were permitted to visit their daughter in hospital for only ten minutes, twice a week.

Marcela spent 42 days in an incubator before she was discharged home.

Her condition remained extremely fragile. She struggled with feeding, consuming no more than two ounces of food a day, and her parents were warned that she might not survive.

A Mother Refused to Stop Searching

Despite the devastating prognosis, Isabel continued looking for specialists who might be able to help her daughter.

With support from friends and family, she began raising money for treatment and shared Marcela’s story publicly.

An interview with the television network Univision eventually helped connect the family with Dr. Sitaram Emani, a cardiac surgeon at Boston Children’s Hospital.

In September 2021, Isabel and Marcela traveled to Boston for specialized evaluation and treatment.

Doctors Discovered Multiple Heart Defects

In addition to ectopia cordis and omphalocele, Marcela had double outlet right ventricle, a congenital heart defect in which both major arteries arise from the right ventricle.

She also had pulmonary valve stenosis, a narrowing that restricted blood flow toward her lungs.

Together, these abnormalities made her condition exceptionally complex.

Dr. Emani and his surgical colleagues developed a staged treatment plan to address her heart defects before attempting to move the exposed heart into her chest.

The First Operation Gave Her a Chance to Grow Stronger

During Marcela’s first major procedure in Boston, surgeons repaired an opening inside her heart and relieved the obstruction affecting blood flow.

The operation went well, allowing Marcela to begin gaining weight and strength.

However, her heart still remained outside her chest.

Until the next stage of treatment, she wore a specially designed protective brace that allowed her mother to hold her more safely.

For Isabel, being able to embrace her daughter without the same overwhelming fear was an important emotional milestone.

Her Heart Was Finally Placed Inside Her Chest

In 2022, Marcela returned to Boston Children’s Hospital for her second major operation.

A multidisciplinary surgical team successfully placed her heart inside her chest cavity and reconstructed her abdominal wall.

In a March 2023 update, the hospital reported that Marcela was back home in Guatemala and doing remarkably well.

At two years old, she was gaining muscle strength, running around and enjoying games of hide-and-seek with her family.

The little girl whose parents had once been afraid to hold her could now enjoy the everyday experiences of childhood.

For Isabel, the journey was a reminder of why she had continued searching for help even when her daughter’s prognosis appeared bleak.

Source: Boston Children’s Hospital, January 11, 2022, with a March 2023 update — Saving Baby Marcela: A Mother’s Mission to Finally Hold Her Daughter.