Typically, spina bifida is diagnosed during pregnancy. Often with genetic screening and/or ultrasounds. It can also be found after your baby is born.
At diagnosis your doctor/midwife should discuss different options. These include postnatal surgery, prenatal (fetal) surgery, adoption and termination. There are a range of treatment options available and will depend, in part, on the specific nature of the diagnosis.
The healthcare provider who gives you the diagnosis may not be the right specialist to answer all of your questions, and shouldn’t try to guess or influence you. It might be stressful to have to wait for the specialist, but they are the ones who can give you the most up-to-date and accurate information about spina bifida.
Some specialists to consider seeking out are a neonatologist, pediatric neurosurgeon, developmental pediatrician at a spina bifida clinic, and the Ontario Fetal Centre located at Mount Sinai Hospital in Toronto.
Your healthcare provider should be able to refer you to the proper specialist. We can also help connect you to resources if needed.
- Common questions parents often ask at diagnosis:
- Will my child go to school?
- Will my child be able to swim?
- Do I have to quit my job?
- Will we have to move?
- Will he/she have pain?
The abilities of your child will be unique to them, but many people living with spina bifida lead full and rewarding lives. There are many resources available in Canada to help you and your family adapt to life with a child with special needs, if needed.
In the days since the diagnosis, it may seem like your world has been turned upside down as you are trying to collect information and learn a whole new language. We understand that, as we have all been where you are.
Spina Bifida Families of Canada would like to say congratulations on your pregnancy and welcome to the spina bifida family.
After a Diagnosis
This may be a very stressful time for you and your family. Remember to take time for yourself. Enjoy your pregnancy, do something fun! Take maternity pictures. Name your baby, talk to people, ask questions and educate yourself.
You are on a journey, and the first step is hard. But you are not alone. There are many families who have been where you are and can share our experiences.
The time immediately following a diagnosis can be very confusing, emotional and overwhelming.
We suggest the following to help you move forward through the days ahead:
- Bring a pen and paper to your appointments and write down questions in advance. Take business cards and don’t expect to remember anything you haven’t written down.
- If you have a name for baby, you can call baby by their name.
- Ask questions, and if you don’t understand, ask more questions.
- Find a support group (Spina Bifida Fetal Surgery Canada or Our Lives, with spina bifida in Canada are two Facebook groups the community often find helpful, but are not run by SBCAN) and ask more questions.
- DO NOT GOOGLE. Google is a scary place when you have a medical diagnosis.
- Find trusted online sources of information.
- Reach out to us on our Facebook page Spina Bifida Families of Canada, our Facebook group Spina Bifida Families of Canada, or via our Contact Form. We are here to help!
Fetal surgery is now available in Canada. This is where your baby would undergo spina bifida closure surgery in-utero. This surgery improves the probability of better outcomes for your baby. It doubles the probability of your child being able to walk independently and decreases the probability of your child’s need for a shunt by half.
We recommend that you contact the Ontario Fetal Centre at Mount Sinai Hospital for additional screening and to assess your eligibility for the surgery. We also recommend that you take a look at the MOMS Trial, the first published study of prenatal versus postnatal repair of myelomeningocele.. You must act quickly! Fetal surgery must be performed before 25 weeks gestation.
Fetal surgery is a treatment option, but it is not a cure, and possible complications from the open neural tube defect will remain. Fetal surgery may be the right thing for some families, but not for every family.
Post Natal Closure
Historically, the most common approach to address spina bifida is to surgically close the opening after birth, usually within the first week, ideally within the first 48 hours of life. This can be done at a children’s hospital closest to you. Your baby will remain in the hospital (some units put the babies in Neurosurgical ICU, others in Neonatal ICU) until his/her back has healed enough to go home.
For more information about the adoption process and links to local adoption resources, please visit the Adoption Council of Canada's website.
If you choose to terminate your pregnancy, please speak with your physician for further details. In Canada, you must do so before 24 weeks gestation.
For more about pregnancy and infant loss support, please visit the PAIL website.
After a spina bifida diagnosis your doctors will recommend a number of tests. This is a quick overview of what these tests are; your doctors will explain them in more depth during your appointments.
You have probably had a couple of ultrasounds already in your pregnancy. You should now have regular ultrasounds until the baby is born. These are often part of your regular appointments with your doctor. These will not harm your baby, but let the doctors monitor the baby and your pregnancy.
Your doctors will review their care plan with you.
A fetal echocardiogram uses an ultrasound to look at your baby’s heart. They will look at the structure of the heart and how the heart is functioning. It will also show blood flow and how the blood is moving through the heart. They will look at all of the chambers of the heart. This test is usually only done once.
Your doctors may recommend a fetal MRI. An MRI uses very sophisticated technology to examine your baby in more detail than an ultrasound. It does not use radiation and it is a safe test during pregnancy.
For an MRI you will lie on a narrow bed and go into the MRI machine, which is a tight space. During the test there will be a variety of loud strange noises as the machine is working. The MRI tech will instruct you over a microphone. The test will take approximately an hour.
Your doctors may recommend more than one MRI if you have fetal surgery, to look at baby before and after surgery.
This is an example of an MRI and your doctor can explain to you everything that they can see in this picture. If you are interested, ask for a copy of the pictures.
Before considering fetal surgery, doctors will want to do an amniocentesis. Your doctors should review the reasons, risks and benefits of this test with you.
The purpose of this test is to take a sample of amniotic fluid and use it for genetic tests. The doctors will test for any additional genetic conditions that may be associated with the finding of the open neural tube defect. The sample of amniotic fluid will show high levels of alpha fetoprotein (AFP), this is a normal finding with spina bifida.
Amniocentesis is done by inserting a small needle into your belly, and into the amniotic sac, while also doing an ultrasound to monitor baby. This test feels similar to having blood drawn with a funny little ‘tug’ sensation, similar to a pap smear.
Our Surgery Stories
Romeila and Eiko's Surgery Story
We received our baby's spina bifida diagnosis in May 2017. I was crushed and cried for days. I imagined the worst things possible. She is my only daughter with 4 older brothers. I wondered what her life would be like. Would she be in pain? Would she be happy?
Amanda and Nickolas' Surgery Story
I found out that my son had spina bifida in July 2009. I was 22 weeks pregnant and sitting in a room alone and was being given all of these choices about what to do with our lives. I had a 15 month old daughter at home, and was so worried about how her life was would be impacted. I was worried about what his life would be like, and I just wanted to know what spina bifida looked like.
Johanna and Maia's Surgery Story
In October 2017 we were excited for the ultrasound to find out our baby’s sex, but in a matter of minutes everything changed. What was to be the best day of our lives became a moment of fear.
Rachael and Everett's Surgery Story
Babies are truly a miracle. No one ever wants to hear their baby isn’t healthy, but for some of us that’s a reality we know all too well. In October 2017, I received a call from my doctor saying he needed to go over my ultrasound results. I immediately went into a panic as I had no call like this with my two previous pregnancies.