Corin & Granger- Omphalocele
Corin and her husband went through infertility and did IVF to have their miracle son Granger. Granger was diagnosed with an Omphalocele by his mom (who has ultrasound training) before the anatomy scan. Granger was born at 36 weeks with a giant Omphalocele containing his liver and bowels and was immediately intubated. With multiple setbacks, including a bowel obstruction, that ended up being a blessing in disguise because the surgeons were able to remove some bowel and place it back into the abdomen and took some pressure off the lungs, but he had a few rough days after. Granger left the NICU after 117 days with a Gtube and plans for another surgery. He loves the outdoors and is very active.
Celeste & Henryk- Heart Defect
Henryk was born with Hypoplastic Left Heart Syndrome (HLHS). Henryk was diagnosed at 20 weeks gestation through an amniocentesis. He suffered brain damage from lack of oxygen at 6 months old and we were told he would never walk, talk or get off the respirator but he was able to do all those things! At age 5 he had more genetic screening and was diagnosed with SMAD-2 which explained his HLHS, asplenia, and heterotaxy syndrome. Henryk lived a beautiful life for 5 years with a contagious smile and heart of gold. He loved playing with his siblings, arts and crafts and his favorite movie character Knuckles. He is forever loved and our hero.
Lindi & Hutt- TAR & Limb Difference
At 11 weeks pregnant Lindi was told her child was sick and sent to MFM for deeper testing. With an inconclusive ultrasound the doctors felt her baby was incompatible with life. After an amniocentesis it was confirmed that Hutt has TAR. With the diagnosis brought devastation but she knew she loved her baby and would give him everything! At birth they found Hutt didn’t have any arm bones, and in the 30% with club feet. Hutt is amazingly strong, resilient and just the most hardworking little guy. The way he figures out how to adapt and do things his own way is remarkable and inspiring. He is destined to do BIG things and he is EXTRAORDINARILY amazing!
Maria & Evangeline- Trisomy 18
At the 12 week ultrasound Maria was told her baby had an Omphalocele and sign of Trisomy 18. The biggest challenge Maria experienced was finding doctors willing to treat her daughter once the Trisomy 18 diagnosis was confirmed. Evangeline lived a beautiful and active 3.5 years, went to school, and loved going to the pool and spending time with her family.
Tausha & Aspen- Hydrocephalus
After a long journey of infertility, Tausha and her husband put all their savings and prayers into IVF. With much success and expecting their miracle at the 20 week anatomy scan they were told Aspen had Lobar Holoprosenchephaly. At 35 weeks Aspen was diagnosed with severe Hydrocephalus with a head circumference measuring 43.2 cm. She was born at 37 weeks. A VP shunt was placed at just 5 days old and after 34 days in the NICU, God answered their prayers and Aspen was discharged and she is moving mountains everyday.
Whitney and Terry Ann- Trisomy 9
After several miscarriages Whitney became pregnant with Terry Ann who at her 20 week appointment was told she was very small and may not survive. After further exams and long appointments, it was believed that Terry Ann had skeletal dysplasia and concerns for her lungs. Throughout the pregnancy there were many questions and concerns. After having an amniocentesis and negative microarray everything was negative. Terry Ann was born at 33 weeks and 3 days with many doctors surrounding her but did not have to be intubated. At 2 months old and after further genetic testing it was determined she had Trisomy 9 Mosaicism. After 164 days in the NICU she was transferred to another unit and after 254 days she went home. Terry Ann has a gtube and is trach/vent dependent. She is absolutely the Happiest little girl and truly touches everyone’s life that has the honor of knowing her.
Nancy & Alejandro
The Espanol Group has been created to help with language barriers in our Born Abel family. We strive to connect all medically complex families to resources.
Debbie & Theo- Trisomy 13
Theo was diagnosed with Trisomy 13 in utero around 15 weeks. Doctors continually recommended for us to terminate him, but we chose to embrace Theo and the pregnancy as long as God allowed. Theo was born on January 25, 2022 and spent 5 and a half months at the hospital before coming home. Theo came home with a tracheostomy, ventilator and Gtube. Theo’s 7 weeks at home were unforgettable. His siblings, Ashlyn and Jack, got a chance to bond with their brother in a way that they’d been unable to during his hospital stay. Theo went home to Heaven on September 3rd, 2022 after spending 7 months and 9 days with us. He will always be remembered.
Ashley & King- Cystic Fibrosis
Hello! My name is Ashley and my son is “King” JaKhai he was born in June 2021. JaKhai has Cystic Fibrosis with CF Liver Disease, Trisomy 21, and Short Gut Syndrome. He spent 105 days in the NICU due to a complex Meconium Ileus, and hundreds more days inpatient. I am so grateful to connect with other parents with children that have CF and hope to be a source of support!
Trachies and Tubies Group
Trachies and Tubies Groups is a support group for all Medically complex kids with trachs and/or tubes. We want to bring support with tips and discussion to all families whose child is tube-fed or reached.
Are you interested in helping as a liaison for a diagnosis?
We would love for you to join our team! Please fill in the form below to begin the interview process.