Stories of Premature Births, Lethal/Non-Lethal Anomalies with Fetal Surgery and Perinatal Hospice

Charlotte Lozier Institute  

The following is a compilation of public stories shared by families who were affected by a prenatal diagnosis of a lethal or non-lethal fetal anomaly or very premature birth.


To view in PDF, please see: Stories of Premature Births Lethal-NonLethal Diagnoses


Fetal Surgery:

  • Kentucky, 2006: Colleen and Blake received a prenatal diagnosis at 20 weeks that their son had a life-threatening case of hydrocephalus and spina bifida. Skilled surgeons performed fetal surgery on baby Nate at 23 weeks in utero and then he received intensive care upon birth. In 2011 he turned five years old.[1]
  • Wisconsin, 2012: April Leffingwell received the prenatal diagnosis at 20 weeks that her son had a rare and possibly life-threatening condition called CCAM, and that he had a large tumor in his lung. At 25 weeks in utero, doctors removed the tumor during fetal surgery. Eight weeks later, he was born, and he is now two years old.[2]
  • Georgia, 1999: Julie and Alex Armas were given the prenatal diagnosis at 15 weeks that their son had permanent nerve damage from an opening in his spine due to spina bifida. Doctors said half of babies with spina bifida are aborted, but they refused. At 21 weeks, Samuel was operated on in utero, and in 2012 he was a healthy12-year-old.[3]


Lethal/Life-Threatening Anomalies with Survival or Perinatal Hospice:

  • Rhode Island, 2014: Sonia and Rony Morales were given a prenatal diagnosis that their daughter had anencephaly and was missing parts of her brain and skull. Doctors said baby Angela was “incompatible with life” and suggested abortion. The Morales’ refused, and Angela underwent a successful brain surgery last May. She turned one year old this March.[4]
  • Pennsylvania, 2000: Retired Philadelphia Eagles player Vaughn Hebron and wife Kim were given a prenatal diagnosis at five months of twin-twin transfusion, a life-threatening condition. They decided to continue with the pregnancy, though doctors said there was a 70% chance one or both twins would die. Son Savaughn received intensive care, and now he and his brother are healthy teenagers.[5]
  • Florida, 2013: Lindsey and Kevin Dennis were given a prenatal diagnosis at 20 weeks that their daughter had a fatal type of anencephaly. Doctors offered abortion, but instead they welcomed Sophie who lived for 10 hours surrounded by the love of family and friends.[6]
  • Washington, 2005: Jeanne and Steve Deibert received a prenatal diagnosis that their son had Trisomy 18, a chromosomal anomaly that causes heart and kidney problems so severe that less than 10% of babies survive the first year. Deciding against abortion, Jeanne gave birth to baby Robbie who lived for 29 days during which time the hospital provided perinatal hospice care for him. Family, friends, and their priest visited them, and because of the support Jeanne described the experience as serene.[7]
  • Pennsylvania, 2008: Senator Rick Santorum and wife Karen were given a prenatal diagnosis that their daughter had life-threatening Trisomy 18. Bella survived with medical care, and turns seven years old this May.[8]


Very Premature Birth:

  • Germany, 2010: Freida Mangold was born at 21 weeks and five days into the pregnancy after her mother suffered complications. After receiving intensive care, she was able to go home with “no indication that she will not be healthy” according to her doctor. She is Europe’s youngest premature baby known to survive.[9]
  • Florida, 2006: Amillia Taylor was delivered by emergency C-section when she was 21 weeks and six days She received medical care and survived. As of 2007, she showed no signs of long-term effects of prematurity.[10]
  • Canada, 1987: James Gill was born at 21 weeks and five days into the pregnancy and weighed just over one pound. His mother suffered complications, so before his birth, doctors prepared for a stillborn. He is known as the most premature baby to survive, and is now in his 20s with no seeming severe health condition.[11]
  • England, 2015: Bella Davison was born at 23 weeks, weighing one pound. Doctors said she wouldn’t live through the night, but she did and after six months of medical care, she was healthy enough to go home.[12]
  • New Jersey, 2013: Faith Massey was born prematurely at 23 weeks due to a placenta infection. Weighing only 15 ounces, she received months of intensive care and was finally able to go home healthy.[13]
  • Virginia, 2008: Charlotte Ryun was born at 24 weeks due to a placenta complication and major bleeding in her mother. Charlotte underwent intensive care, and is now seven years old and in good health.[14]

















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