If you are an expectant parent who has been told that your pregnancy is affected by Spina Bifida, we can help you find resources or connect you to people who can share their experience and expertise. Or if you are a parent of a young child or an adult who has just been diagnosed with Spina Bifida, we have information and resources available for you also.
We know that you are searching for information to help you understand more about your unanticipated diagnosis, and we want you to start in the right place. SBANT has lots of resources and a very strong parent group that you can chat with for support.
In North Texas, we have two Spina Bifida Clinics. One is located at Texas Scottish Rite in Dallas and one is located at Cook Children’s in Fort Worth. Click on their names for more information. For a complete list of clinics in the state of Texas, visit the SBA list of clinics here. If you need assistance connecting with the clinics, please contact us.
Spina Bifida Association of North Texas
If you live in Texas, we are here as an affiliated chapter of the Spina Bifida Association to serve you. If you live in a surrounding state, there might be a chapter closer to you that we can help you locate. Please contact us about referrals to local providers. We can also connect you to families in Texas who have shared your experience. We have an amazing group of moms and we use a private Facebook group to share information with each other. We are here to help and invite you to contact us by either filling out our form or by emailing us at firstname.lastname@example.org.
The Spina Bifida Association provides information on what Spina Bifida is, what we know about its causes, and suggested do’s and dont’s during the first days and weeks after the diagnosis.
You can access that information here.
Next Steps for Expectant Parents
After you find out you’re having a baby with SB, what are the next steps? It is recommended that you meet with a pediatric neurosurgeon and/or SB clinic as soon as possible. You will also need to meet with a maternal-fetal specialist or perinatologist to closely follow your pregnancy. You may also need to meet other specialists to learn as much as you can and understand the kind of care your child may need. It is also a great idea to chat with other parents.
Prenatal or Postnatal Surgery
For pregnancies diagnosed earlier than 25 weeks gestation, in-utero fetal surgery may be an option to close the baby’s back before birth. There are potential risks and benefits of fetal surgery, and it is not appropriate for all women. For those who choose and qualify, an immediate referral must be made to a medical center where the where the operation is performed.
Babies with SB should be delivered at a medical center that specializes in SB so they can receive specialty care during and after birth. This gives you and the specialists every chance to prepare for the best outcome. After surgery, the baby will be monitored in the neonatal intensive care unit (NICU). The average length of stay is 2 weeks, but this varies based on the child’s needs. When the baby is discharged from the hospital, he or she will have periodic follow-up appointments with a pediatric neurosurgeon, orthopedist, urologist, and possibly other specialists. Appointments will be frequent in the first year, and usually less often as time passes.
What To Do:
The Spina Bifida Association has compiled this list that may be helpful to you at this time of your diagnosis.
Don’t feverishly search for “Spina Bifida” online or on social media. Although many organizations offer valuable resources, there are even more who have out-of-date or inaccurate information.
Do make sure that the information you gather is from a trusted, experienced source, and that you follow the advice of health and medical professionals who are knowledgeable about Spina Bifida. Search our list of clinics and providers, and contact our National Resource Center for more information, including how to connect with parents and caregivers who have been in your shoes.
Don’t exhaust yourself trying to determine exactly what the future holds. A diagnosis of Spina Bifida is a lot to take in. While you can’t help but wonder what having a child with Spina Bifida will be like, it’s important to take one step at a time.
Do speak with other parents and caregivers who have experienced what you are going through. Contact our National Resource Center, visit our many Facebook groups, or ask your local Chapter to direct you to their network of parents.
Do not hesitate to contact us! We are here to help. Email us at email@example.com.