Your health care provider will likely suspect or diagnose your baby's condition during your pregnancy. In addition to the health care provider you've selected to care for you during your pregnancy, you'll also likely consult with a multidisciplinary team of physicians, surgeons and physical therapists at a center that specializes in spina bifida treatment. Children with myelomeningocele require ongoing medical attention throughout their lives to monitor their condition and treat complications.
Because appointments can be brief, and there's often a lot of ground to cover, it's a good idea to be well prepared. Here's some information to help you get ready for your appointment, and what to expect from your health care providers if there are suspicions that your baby may have spina bifida.
What you can do
- Be aware of any pre-appointment instructions. At the time you make the appointment, be sure to ask if there's anything you need to do in advance, such as drinking extra water before an ultrasound.
- Make a list of all medications, vitamins and supplements that you took before and during your pregnancy.
- Ask a family member or friend to come with you, if possible. Sometimes it can be difficult to remember all the information provided to you during an appointment. Someone who accompanies you may remember something that you missed or forgot.
- Write down questions to ask your doctor.
Preparing questions ahead of time will help you make the most of your time with your health care providers. List your questions from most important to least important in case time runs out. For spina bifida, some basic questions to ask include:
- Is spina bifida present and how severe is it?
- Is there evidence of water on the brain (hydrocephalus)?
- Can my baby be treated during pregnancy?
- What will be done for my baby immediately after birth?
- Will the treatment cure my child?
- Will there be any lasting effects?
- Who can I contact to find out about community resources that may be able to help my child?
- What are the odds of this happening again in future pregnancies?
- How can I keep this from happening again in the future?
- Are there any brochures or other printed material that I can take home with me? What websites do you recommend visiting?
In addition to the questions that you've prepared to ask your doctor, don't hesitate to ask questions during your appointment.
What to expect from your doctor
Your doctor is likely to ask you a number of questions. Being ready to answer them may reserve time to go over any points you want to spend more time on. Your doctor may ask:
Oct. 04, 2011
- Have you ever had a child with spina bifida or other birth defects?
- Is there a family history of spina bifida?
- Are you on any anti-seizure medications, or were you taking them at the beginning of your pregnancy?
- Are you aware of the resources in your community that are available to support you and your child in dealing with spina bifida?
- If necessary, are you able to travel to a facility that offers specialized care?
- Spina bifida fact sheet. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/spina_bifida/detail_spina_bifida.htm. Accessed June 28, 2011.
- Lightner DD. Spina Bifida. In: Ferri FF. Ferri's Clinical Advisor 2012: Instant Diagnosis and Treatment. Philadelphia, Pa.: Mosby Elsevier; 2012. http://www.mdconsult.com/books/page.do?eid=4-u1.0-B978-0-323-05611-3..00028-8--sc29020&isbn=978-0-323-05611-3&sid=1180550958&uniqId=266655520-3#4-u1.0-B978-0-323-05611-3..00028-8--sc29020
- Spina bifida. March of Dimes. http://www.marchofdimes.com/pnhec/4439_1224.asp. Accessed June 27, 2011.
- Sandler AD. Children with spina bifida: Key clinical issues. Pediatric Clinics of North America. 2010;57:879.
- Folic acid: Questions and Answers. Centers for Disease Control and Prevention. http://www.cdc.gov/ncbddd/folicacid/faqs.html. Accessed June 29, 2011.
- Spina bifida. Centers for Disease Control and Prevention. http://www.cdc.gov/ncbddd/spinabifida/facts.html. Accessed June 30, 2011.
- Hochberg L. Prenatal screening and diagnosis of neural tube defects. http://www.uptodate.com/home/index.html. Accessed June 30, 2011.
- Routine tests in pregnancy. American Congress of Obstetricians and Gynecologists. http://www.acog.org/publications/patient_education/bp133.cfm. Accessed June 30, 2011.
- Adzick NS, et al. A randomized trial of prenatal versus postnatal repair of myelomeningocele. New England Journal of Medicine. 2011;364:993.
- Surgery on fetus reduces complications of spina bifida. National Institutes of Health. http://www.nichd.nih.gov/news/releases/020911-MOMS.cfm?renderforprint=1. Accessed June 30, 2011.