Advanced Fetal Care Center | Patient Stories

Emilya AFCC Patient

No more missing out: Bouncing back after an SCT
At the same time they learned that they were having a girl, Emilya's parents were told that she had a tumor at the base of her tailbone called a sacrococcygeal teratoma (SCT).

 

Julia AFCC PatientDown syndrome: Reimagining what's possible
Many babies with Down syndrome can breastfeed right from the beginning, while others may be able to nurse with help. Learn how Ella gradually introduced breastfeeding to her daughter, Julia. 

 

Julia Ryan AFCC PatientA 'superstar' homecoming: Julia's journey for bladder exstrophy care
During Tori Ryan's pregnancy, doctors diagnosed her unborn child, Julia, with bladder exstrophy, a rare and complex birth defect. Their concern for their unborn baby led the Ryans to Boston Children's. 

 

Charlotte Bent AFCC patientSecond opinion gives unborn baby second chance
Born with congenital hydrocephalus, Charlotte Bent is now hitting all of her developmental milestones - smiling, laughing, playing peek-a-boo, bearing weight on her legs.

 

Ryan AFCC patientMeet Ryan: The boy who grew his own esophagus
When Tracy was six months pregnant with Ryan, specialists at Boston Children's Advanced Fetal Care Center diagnosed him with VACTERL association, a hodgepodge of birth defects.

 

Nora O’Brien-Lemanski, Callum O’Brien-Lemanski and Ella SheaTale of two mothers: Bridge between families facing rare diseases brings hope
Two families bond over diagnosis of GACI (generalized arterial calcification of infancy), an extremely rare disease with an 85 percent mortality rate. Learn how these families connected. 

 

Brooks AFCC PatientLife after cleft lip surgery: Finding Brooks' smile
When Rick and Aimee learned that their second child Brooks would be born with a cleft lip and soft palate, they weren't sure what to expect. Today Brooks is looking good and feeling great. 

 

Tristian AFCC PatientOne family's story: our unborn baby's birth defect
When the Perkinses got to their 20-week ultrasound, they were told the words they never wanted to hear: "There is a problem with the baby."