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Birth of a Breakthrough: Spina Bifida Video - CHOP

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Evaluation: Learning Your Options

Once the spina bifida diagnosis is confirmed, mothers and fetuses undergo a variety of assessments and tests at CHOP to determine the nature and severity of the spina bifida defect and to help determine the spina bifida treatment that’s right for them. Learning your options after diagnosis is critical so you can receive the best care possible for you and your unborn child. CHOP’s Center for Fetal Diagnosis and Treatment team will assess the baby’s fetal condition and your appropriateness as a candidate for prenatal or postnatal spina bifida treatment. The development of spina bifida in utero surgery has changed the historical course of spina bifida treatment and the long-term outcomes. This video explores what families experience as they learn about treatment options and decide on the spina bifida treatment that’s right for them.

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The Birth of a Breakthrough Video explores spina bifida diagnosis, treatment options, delivery and follow-up care at The Children’s Hospital of Philadelphia. Experts at CHOP’s Center for Fetal Diagnosis and Treatment have the world’s greatest collective experience in prenatal repair for spina bifida.
 

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Transcript: Evaluation: Learning Your Options


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Lori J. Howell, RN: When a mom first calls our center, either our nurse coordinator or genetic counselor will talk with them about how they first learned about the diagnosis of spina bifida, what tests they've had so far, and their understanding of the diagnosis.

Susan R. Miesnik, MSN: They are scheduled for an entire day of diagnostic testing and counseling.

N. Scott Adzick, MD: The diagnostic process involves radiologic studies, maternal-fetal ultrasound that's usually 2 plus hours in duration, in which we look at everything.

Mark P. Johnson, MD: ...how big the lesion is, what segments of the spine are involved. They look for the degree of hydrocephaly, evidence for the Chiari malformation. And we look for evidence of paralysis or function of the lower extremities.

N. Scott Adzick, MD:Fetal MRI – that usually takes 30 - 45 minutes and requires the mother to be still inside the MRI chamber. A fetal echocardiogram to look at the fetal heart.

Jack Rychik, MD: Fetuses with myelomeningocele typically do not have any problems that are wrong with the fetal heart. However, as a fetal cardiologist, it's very important to make sure that we're not dealing with any abnormalities whatsoever of the heart, even if they're mild.

Mark P. Johnson, MD: Part of the evaluation when a family comes to our center is not only the detailed imaging of the fetus, but careful evaluation of the mother herself.

Lori J. Howell, RN: And then we meet with the family to go through the results of those tests and tell them what we know about the diagnosis.

N. Scott Adzick, MD: The counseling involves a multidisciplinary group – an experienced nurse, neurosurgeon, fetal surgeon, maternal-fetal medicine specialist, social worker. This is a team that can provide information to the family, review the results of the tests, and present the options.

Michael Mulligan, father: It was amazing how much information they were able to convey, and we understood it. Very caring and it just made you feel like, if they say this is an option for you, it was a potentially great thing for us.

Natalie E. Rintoul, MD: Families faced with the diagnosis of spina bifida in utero are now able to make choices.

Mark P. Johnson, MD: Many families, after hearing the range and potential severities of the disabilities and problems these children face, choose to terminate the pregnancy.

Leslie N. Sutton, MD: They have the option of staying here at CHOP, delivering here and we'll do conventional treatment, which is we'll deliver the baby, and I'll close the back, put in the shunt, whatever's necessary in the newborn period.

Natalie E. Rintoul, MD: Or now they have the option of pursuing fetal surgery, which really does change the natural history of the disease as we knew it before.

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