The annual reunion brings together a unique community of families who have shared similar struggles. Nearly all the children in attendance had been prenatally diagnosed with a birth defect, such as spina bifida, congenital diaphragmatic hernia, or twin-twin transfusion syndrome, that had potentially devastating outcomes.
“The doctor came in and handed me a box of tissues,” Katie recalls. “She was saying something about an abnormal pregnancy, shunts, abnormalities of the left leg, club foot. I was in complete shock at that point, and I couldn’t really make out what she was saying because it felt like time was suspended.”
In a span of two hours, their lives had been turned upside down.
Cincinnati Children’s, a national leader in prenatal myelomeningocele surgery, recently conducted their 100th prenatal surgical repair. Kelly Song’s daughter was diagnosed with spina bifida at 20 weeks. Read more:
With the CIRM funding, the UC Davis team will be able to launch their one-of-a-kind treatment in the coming months. It will be delivered while the baby is still in the mother’s womb (in utero). The complex procedure, with its unique use of a stem cell “patch,” could improve outcomes for children who are born with the severe form of spina bifida known as myelomeningocele.
award-winning 2020 Connexions magazine, full of updates around fetal research, how our maternal fetal partners are improving outcomes for patient families with conditions such as spina bifida, IUGR and tetralogy of fallot, as well as learning more about PCOS and pregnancy, or the importance around birth photography.
“We have a unique approach that is a technique first established in Brazil by Dr. Lapa, and we brought it over to the United States. Dr. Quintero and I have put together a fetoscopic treatment that is FDA approved to repair open spina bifida, that is entirely percutaneous (there is no laparotomy and no hysterectomy),” said Dr. Ramen Chmait, Director, Los Angeles Fetal Surgery.