Inspiring Life Despite A Diagnosis

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. Giselle, was diagnosed with Microcephaly as a young baby. She is now 3 years old and was recently diagnosed with Cerebral Palsy.

During a prenatal ultrasound, Leslie's doctor  told her that her daughter Lilah would be born with Achondroplasia, a form of Dwarfism. Leslie opens up about the emotional journey from denial to acceptance, and how blessed they feel that she and her husband were chosen to be Lilah's parents.

Bijan was pregnant when she was told one of her twins had some abnormalities. They declined an Amniocentesis, and decided to keep the pregnancy. Once born, they found their son Jackson had 22q11.2 deletion syndrome- DiGeorge syndrome. Their sons are now 3 years old. Jackson's twin, Walker, was recently diagnosed with Autism.

At 10 weeks pregnant Maria found out her little girl would be born with Trisomy 18, or Edwards syndrome. Maria chose to continue the pregnancy and is now 36 weeks pregnant. She has uprooted her life and moved to a new state so she can deliver at a hospital with the most advanced equipment, by Dr.'s with more experience.

Sasha and Gary went to a prenatal doctors appointment where an ultrasound showed enlarged ventricles in their baby's brain, as well as holes in her heart. An amniocentesis revealed their daughter, Zoey, would be born with Trisomy 21- also known a Down syndrome. Zoey is now 7 years old, and her life has inspired Sasha and Gary to adopt a little girl from China with Down syndrome.

At Kristin's 20 week prenatal ultrasound doctors found multiple abnormalities. Although Kristin and Chris were offered to terminate their son, Ethan, multiple times, they chose to continue the pregnancy. Ethan lived 93 minutes. The geneticists found he had full Trisomy 9, which is very rare. None of their doctors had ever heard of a baby with Trisomy 9 being born alive.

Tamara is 7 months pregnant with her first child. Early in her pregnancy, a blood test revealed their son had a 93% chance of having Down syndrome. Tamara and Matthew open up about the grieving process they have been through, and share the emotional journey they have been on since. >>See Tamara and Matthew's Update: One Year Later

Sariah had a typical pregnancy with her son David. Less than 24 hours after he was born, he was in surgery to have his trachea esophageal fistula or TEF repaired The first six weeks of his life, their son, Spencer,  had three major surgeries to repair his esophagus and trachea. It was not until Spencer was 11 years old, that he was diagnosed with CHARGE syndrome. This syndrome can cause different issues in different children, such as heart complications, a cleft palate and/or lip, growth issues, and more. For Spencer, it has caused him to be deaf, visually impaired, and have hypertonia, or poor muscle tone.

Katie was 5 months pregnant when she and her husband went in for a routine ultrasound. When the technician measured Claire, she found that her arms were a little shorter than they should be. They had a follow up appointment scheduled for four weeks later, thinking everything would be normal. At 6 months pregnant, they found out that Claire had a form of skeletal dysplasia, which they later found was Rhizomelic Chondrodysplasia Punctata or RCDP. This form of skeletal dysplasia is very rare and fatal.

Terah and Brian tried for five years to have a child until Terah got pregnant with their daughter Indy. They did not have any genetic testing done while Terah was pregnant, so they were surprised to find out just an hour after her birth, that Indy had Down syndrome. They were both devastated and scared, not knowing what the future held or how to accept the diagnosis. They decided to conquer their fears and do the best they could.

Erika was six months pregnant when during an ultrasound it was discovered that her baby Erilyn had Microcephaly. Erika was put under a lot of pressure to abort Erilyn even though she was so far into her pregnancy. Erika decided to continue the pregnancy, despite the challenges.

Tiffany and Nathan went to their 20 week appointment excited to find out the gender of their baby. While at their appointment, they out that their baby, who they named Ellie, had some abnormalities with her stomach, which is a marker for Down syndrome. Tiffany and Nathan started meeting bi-weekly with a Parineonatologist, where they continued to find markers of Down syndrome. After several ultrasounds with the doctor, they found that Ellie was missing the portion of her brain that separates the hemispheres, which is not typical of Down syndrome. An hour before she was born, Ellie was diagnosed with Aicardi syndrome and it was not until she was three days old that she was diagnosed with Turner syndrome.

Alyssa was 5 months pregnant with their baby Will, when she was told he had some complications. A specialist, who thought that it was Encephalocele, told Alyssa and Ben that that Will had a less than one percent chance of surviving until birth. And if he did, he would have no quality of life. Will is now 1 year old, and has been diagnosed with  Aplasia Cutis Congenita, and a developmental delay.

At 4 months pregnant, Traci and Mike went to the Dr.'s office for a routine check-up, and found out that one of their twin boys, Liam, had a Cleft Lip, and some abnormalities with the development of his brain. Traci and Mike were sent to see a specialist that who confirmed Liam had Semi-Lobar Holoprosencephaly, and suggested they terminate the pregnancy, which would have terminated  both of their babies.

At 4 months pregnant with twin girls, Sarah found out that one of the twins had Hydrocephalus. Sarah opens up about the joys and challenges she's had while raising a child with special needs.

Jim is 51 years old and has Down syndrome and his mother, Shirlene, is in her mid-80’s. Shirlene never placed Jim in an institution, like many parents of her generation did, but instead brought him home and treated him like her other children. Shirlene and her husband had never heard of Down syndrome before, they did not know what it was and it devastated them both.

Early on in Krystal’s pregnancy, she was told that their baby, Amnesty, had Spina Bifida. Dr.'s said Amnesty would have little leg function, and there may be issues with her brain being squeezed by excess fluid, causing brain damage and bladder issues. They were also told her had a congenital heart defect (CHD). Krystal and Dusty saw many different doctors throughout the pregnancy, many said they should terminate the pregnancy.

Miriellys was 6 months pregnant when she found out their  had a cleft lip and needed further testing to see why. The further testing confirmed the diagnosis of Trisomy 13. Their doctors pushed for abortion saying the condition was "incompatible with life." Despite the diagnosis, Miriellys and Alex chose to continue the pregnancy. After the initial fear and anger had passed, they chose to take things one day at a time. Now, Aerilyn is almost three years old and Miriellys and Alexis are thankful that they’ve had the extraordinary opportunity to be parents to their amazing little girl.

Beth and Bryce have a son named Smith. After Smith was born, Beth noticed that he would not look at her. Over the next few years Beth and Bryce noticed more developmental issues; Smith could not walk or use his hands or talk. Smith was nearly three years old before he was diagnosed with Angelman syndrome.

Christine’s daughter Skylynn was diagnosed at 2 years old with Autism. When Skylynn was first diagnosed, Christine found out that neither her insurance company or the state she lived in would cover the cost of Autism therapies. Christine began to fight for insurance reform and has a truly inspiring story of her journey to getting legislation to pass that insurance companies be required to cover Autism therapies. Skylynn is now nine years old and although she is considered to be severely Autistic,  she has changed her mother’s life for the better.