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US infant with rare heterotaxy syndrome defies initial prognosis

Wren Michelle Roberts, born in September with a rare form of heterotaxy syndrome, has defied doctors' initial fears that her condition was unsurvivable. An unforeseen congenital trait in her heart has been credited with her progress.

  • Wren Michelle Roberts was born with heterotaxy syndrome, a condition where organs do not form in their correct positions.
  • Doctors had initially feared her combination of birth defects, including her stomach in her chest, no spleen, spina bifida, and multiple heart defects, was unsurvivable.
  • An abnormal, unobstructed major aortopulmonary collateral artery (Mapca) in Wren's heart is believed to be crucial for her survival.

An infant born in Louisiana, Wren Michelle Roberts, has defied a bleak initial prognosis after being diagnosed with an exceedingly rare form of heterotaxy syndrome. Her doctors had feared the combination of birth defects was unsurvivable.

Wren was born in September with her stomach in her chest, no spleen, spina bifida, and multiple heart defects. Dr. Gabriella Bluett-Mills, a pediatric complex care specialist, stated that only 15 documented examples of cases with the same specific genetic mutation as Wren's could be found in medical literature.

Despite the initial concerns, Wren has met several milestones. Her physician, Dr. Bluett-Mills, attributes this to an unforeseen congenital trait: an abnormal, unobstructed major aortopulmonary collateral artery (Mapca) in Wren's heart. This vessel allows blood from her heart to split, providing oxygen to both her body and lungs.

Wren's parents, Nick and Savannah Roberts, have been able to take her to a high school football game and church, observing protective measures due to her immunocompromised state. Wren had spinal surgery at one week old and continues to require a feeding tube and numerous doctors' appointments.

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