US infant defies bleak odds from rare congenital trait: ‘Don’t quit before your child quits’
Summary
A baby named Wren Michelle Roberts was born with a rare set of birth defects that made her survival very unlikely. However, thanks to a unique heart condition and her parents’ care, she has reached several important milestones and is alive past initial expectations.Key Facts
- Wren was born in September with a rare condition called heterotaxy syndrome, where organs form in unusual places.
- She had no spleen, spina bifida, multiple heart defects, and her stomach was in her chest.
- Doctors found only about 15 similar cases worldwide with the same genetic mutation.
- Wren’s parents were told she might not survive pregnancy and planned for a funeral after her birth.
- A special artery in her heart (called MAPCA) was not blocked, helping keep her alive by supplying blood and oxygen.
- She has been able to do everyday activities like going to church and a high school football game with safeguards since she is immunocompromised.
- Wren had spinal surgery at one week old and uses a feeding tube to get nutrition.
- Her medical team predicts she will need ongoing care with many doctor visits.
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