She and her husband Jeff were told to either terminate the pregnancy, or plan a funeral. They chose to continue the pregnancy. Arabella is now a beautiful 2 year old. She was officially diagnosed with Ellis-van Creveld syndrome, a sub-type of Short Rib Polydactyly syndrome. This syndrome has a 30-50 percent survival rate.
Katherine is now expecting her third child, Shiloh. Shiloh has also been diagnosed EVC, as well as a major heart defect. They do not know if Shiloh will live, but are grateful for everyday they have with her.
During her pregnancy Karen saw a high risk obstetrician- because of her age. She had routine prenatal ultrasounds and screenings and all results came back normal. Shortly after her son Caleb was born, Karen was shocked to learn he had Down syndrome.
Karen is a fantastic support and advocate for her son, and all individuals with disabilities.
When Tori and Matt’s daughter failed to sit up or roll over by the time she was 9 months, they started to worry. Their Pediatrician referred them to a Pediatric Developmental Specialist. Through MRI testing, they found that Tori got Cytomegolavirus (CMV) while pregnant, which resulted in their daughter having Cerebral Palsy.
Immediately after Kimber was born, doctors knew there was something wrong. She slept constantly, and she was very limp. Doctors didn’t expect her to live past 6 months. After a few weeks a genetic test revealed she had Prader-Willi syndrome.
Alyssa was relieved to get this diagnosis , because this meant Kimber would live longer than the 6 months doctors predicted; those with Prader-Willi typically have an average lifespan.
Kimber has taught her parents, and those around her to love deeply and unconditionally.
While pregnant, Ariel had a nuchal translucency test on her baby. Doctor’s found that the fluid pocket on the back of their baby’s neck was measuring larger than normal, and later doctors discovered an abnormality with their baby’s heart. At 34 weeks pregnant they were told that their baby was not measuring up to gestational age.
Sarah had an ultrasound scare at a 20 week prenatal appointment. At a subsequent appointment with a specialist, she was told her baby was fine and not to worry. So after Betty was born, Sarah was shocked when a pediatrician told her she was global developmental delayed.
After many appointments and genetic testing, Betty was diagnosed with Potocki-Shaffer syndrome. Although Potocki-Shafffer syndrome is very rare, Sarah rallied and found online support groups, and other families with similar circumstances. She has an awesome website, Bringing Up Betty, and does a Podcast that helps bring special needs families together.
Chrissy was born in the 1970’s when there were few resources. There was little area support for for Ann or Chrissy, so Ann created her own program, and parent network. She lobbied and joined the legislative coalition. She was laughed at, people told her she would never succeed or get funding for her program. Ann proved them wrong.
Pierre Robin Sequence is often found in-utero, but Jessica’s baby girl Eliana was not diagnosed until shortly after birth. Jessica talks about the joys and challenges she has faced while caring for Eliana.
During Ileana’s 20 week ultrasound, doctors discovered her baby girl, Giselle had ventriculomegaly. Ileana and her husband Lorenzo were offered termination as an option, but they decided to continue with the pregnancy.