Preparing for Pregnancy When You Have SMA - Questions for You, Your Partner, and Your Doctor
Deciding to become pregnant as a female with SMA can be a very big decision. In my case, I knew I had always wanted to be a mom but I did not know exactly what that may look like.
Would I be able to physically handle a pregnancy? Who would help me with caring for a newborn? Would my child have SMA?
I had more questions than answers and not many resources available to make the best decisions for me. Through research and my own trial and error, I hope to better help you feel more prepared to make that decision.
Questions to consider before getting pregnant
- Do you feel physically and mentally strong enough to take on a pregnancy?
- Do you have enough support for care for yourself and another human being who will require intensive care for a few years?
- Are you willing to have a decline in physical ability during and after pregnancy that you may not regain?
I was physically strong going into my pregnancy and able to care for myself. I felt like I could handle the physical aspects of pregnancy. That was true! I had no complications during my pregnancy.
Support from friends and family
However, near the end of my pregnancy, I lost the ability to transfer to and from the toilet and to and from the shower. The added weight of carrying a baby made it too difficult. I hoped I would gain it back after having my child but that did not turn out to be the case.
I had support. I had lots of family members nearby and friends willing to step in when my family was unable to.
Not being able to lift my newborn daughter on my own or change her in that phase of her life meant a lot of responsibility fell on those around me. Being realistic about what that looks like is important and planning in advance for who will be able to fill that job will help take some of that stress away.
Questions for your partner
- Do you want to have genetic testing done to see if your partner is an SMA carrier?
- If genetic testing reveals that your partner is a carrier for SMA would you want to do IVF?
- Do they have the capacity to add more caregiving to their long list of caregiving already (If they are your primary caregiver)?
Genetic testing for spinal muscular atrophy
My husband and I chose to do genetic testing. This test is not covered by insurance and cost a couple of thousand dollars at that time.
SMA is an autosomal recessive genetic condition meaning both parents have to be carriers of the faulty gene to have the ability to pass it on to their offspring. My husband turned out to not be a carrier.
Had he been a carrier, our next option to have a pregnancy without the possibility of our offspring having SMA would have been In vitro fertilization (IVF). This would allow doctors to implant embryos that had already been tested for SMA. It is a costly endeavor both monetarily and emotionally.
Increased physical needs during and after pregnancy
My husband is my primary caregiver. He was aware of what I would and would not be able to do physically for our baby.
However, pregnancy caused my physical needs to increase as well. It is important to be prepared for your baseline to look different after pregnancy.
Be very realistic and set clear expectations about what your life will look like after the baby gets here and if you need additional support do your best to plan ahead.
Questions for the doctor
- Find a doctor willing to support you on this journey (this may or may not be a high-risk doctor and they may or may not have had an SMA patient prior)
- Most SMA patients do not have the muscle strength to deliver a baby. Know that you will most likely have a C-section. Ask your doctor what that will look like and what will be done for anesthesia. (Due to spinal fusions in the SMA community it can be difficult to place an epidural)
- Be sure to talk about postpartum care. Hospitals can be the most inaccessible places, especially in the labor and delivery ward of the hospital. They aren’t necessarily equipped to help disabled patients.
More and more resources, groups, and support networks are being formed for mothers who have SMA in this social media world we now live in. They can point you to doctors they have used and what they experienced during pregnancy and postpartum.
If one doctor does not want to support your pregnancy dreams, find a different one. Doctors are human and different people are willing to take on different risks and have different skill sets.
Other considerations around delivering a baby
Educate yourself on what a C-section is. Would you be accepting of the idea of general anesthesia for the procedure if an epidural cannot be placed?
Consulting with the anesthesiologist prior to the delivery day will be important in order to discuss. Share records and x-rays of spinal fusion and rods with your OBGYN early on so everyone can be on the same page.
When touring the hospital prior to your delivery, take note of bathroom size, equipment that may be needed for transfers, and how you will function in that room for a few days.
My postpartum care was difficult and I did not have the space or equipment needed in my room to make it meet my needs. This cut my hospital time down drastically making recovery at home extra difficult. Making your doctor very aware of your needs so that the hospital can be prepared will be important.
Is self advocacy a part of your daily life?