What Records to Bring to a Fetal Spina Bifida Consult?

Receiving a spina bifida diagnosis is overwhelming, and preparing for your first consultation can feel like a daunting task. When preparing for this meeting with a fetal spina bifida specialist, you need more than just a summary of your pregnancy. You will need your OB-GYN to send—or you will need to bring—a comprehensive set of records. The most important items are the actual raw imaging files (DICOM files) of your ultrasounds and MRIs on a physical CD or flash drive, alongside complete clinical notes, maternal bloodwork, and genetic testing results.

A fetal spina bifida evaluation is complex, and the multidisciplinary team will need a complete picture of your health and your baby’s development to give you accurate information about your options ^[1].

The Crucial Difference: Written Reports vs. DICOM Files

One of the most important things you can do when gathering records is to ensure you have the actual image files, not just the typed, paper reports of your ultrasounds and MRIs. While these written reports are helpful, they are not enough for a surgical consultation ^[2].

For open spinal dysraphism (spina bifida), specialists need to see the actual images to evaluate the exact location of the spinal opening, the baby’s anatomy, and the presence of associated conditions like the Arnold Chiari II malformation (where the lower part of the brain pulls down into the spinal canal) ^[3][4][5]. A written report is simply another radiologist’s interpretation, but a fetal neurosurgeon will need to analyze the images themselves to determine if you are a candidate for fetal surgery or to plan postnatal care ^[2][6].

To ensure the team has what they need, you must request DICOM files. DICOM (Digital Imaging and Communications in Medicine) is the universal, high-quality digital format used for medical imaging ^[2][7].

What to request:

• Call the hospital or clinic where your imaging was performed.
• Specifically ask for a physical CD or a USB flash drive containing the raw DICOM files for all ultrasounds and fetal MRIs.
• Do not rely on patient portals, as they often only provide compressed images or typed reports, which do not contain the level of detail required for surgical planning ^[7][8].

Time-Sensitive Steps for Securing Your Records

Do not wait to request your imaging. Medical record departments can sometimes take days or weeks to process physical CDs, and fetal surgery for spina bifida has a strict gestational time window for eligibility (usually before 26 weeks) ^[9][10]. Inquire about Medical Record Release forms immediately upon referral, as hospitals often require these to be processed before handing over physical files.

Other Essential Records to Request

Alongside your imaging, ask your regular OB-GYN to compile the following documents:

• Complete Clinical Notes & Surgical History: Your multidisciplinary care team—which will likely include pediatric neurosurgeons, maternal-fetal medicine specialists, and neonatologists—needs your complete medical history ^[1][11]. Ensure your notes explicitly detail your maternal surgical history, especially any prior uterine surgeries or C-sections, as this heavily dictates whether you are a safe candidate for open fetal surgery ^[9].
• Maternal Bloodwork: Ensure the clinic includes results from all routine prenatal bloodwork, including tests that measure alpha-fetoprotein (MSAFP), a traditional marker used in screening for neural tube defects ^[12][13].
• Genetic Testing Results: If you have had any genetic screenings or diagnostic tests—such as non-invasive prenatal testing (NIPT), amniocentesis, microarray, or exome sequencing—bring these results. Specialists use this information to determine whether the spina bifida is an isolated physical anomaly or linked to a specific genetic variant ^[14][15].

Setting Yourself Up for a Productive Visit

Fetal spina bifida requires coordinated care, and gathering these records ensures the team can hit the ground running ^[16]. Bringing physical copies of your imaging and a thorough paper trail helps avoid delayed consultations or redundant testing. Finally, consider bringing a support person and a notebook to the consultation. Multidisciplinary meetings for fetal anomalies are typically long, complex, and emotionally overwhelming.

Your Records Checklist

Use this quick checklist to ensure you have everything before your appointment:

• [ ] Physical CD or USB with DICOM files of all ultrasounds
• [ ] Physical CD or USB with DICOM files of all fetal MRIs
• [ ] Complete clinical notes from your OB-GYN
• [ ] Detailed maternal surgical history
• [ ] Maternal bloodwork results (including MSAFP)
• [ ] Genetic testing results (NIPT, amniocentesis, etc.)