Table 2.
“How did MS affect your decision not to become pregnant?” | |
Fear of MS worsening with pregnancy (both with postpartum relapse and long-term disease progression) | “Concerned with further impact on disease progression” |
“I'm scared that… the carrying/labor process will be detrimental to my health” | |
“I had 2 friends with MS who died from worsening symptoms after giving birth” | |
Caring for children while living with MS | “MS causes my vision loss and decreased energy levels. I did not want to be responsible for another human being when I felt like caring for myself was already a challenge.” |
“Concern about not having enough energy to give a child (newborn-teenager) all they would need -for me, with MS came a great sense of fear of the uncertainty of my future (and this is still a concern), more than 20 y later as I see how I have steadily declined in all of my abilities.” | |
Concern for the child's future health, genetic risk of MS | “I'm scared that my offspring may get the gene” |
“Refuse to pass it on being 3 out of 4 generations” | |
Pregnancy concerns related to DMT | “I cannot be pregnant on the medication I chose” |
“Husband had a vasectomy because the medication I am taking for MS is not compatible with pregnancy.” | |
Discouragement from medical professionals | “Doctors thought I needed medical treatment more” |
“Without saying it outright, my doctor discouraged pregnancy:(" |
“What did you wish you knew before pregnancy with MS?” | |
Discouragement from medical professionals surrounding childbearing and breastfeeding | “I became pregnant at 42. I was diagnosed in 1985 and was told to stop the birth control pill and to never have a child... when I became pregnant I was taking Betaseron and it was not a planned pregnancy. Stopped Betaseron as soon as I found out I was pregnant. I had a beautiful pregnancy and gave birth to a preemie 4.8 lbs... I wish I would have seen my other neurologists who NEVER said not to have children.” |
“I wish all MS patients had been more encouraged to have kids if desired.” | |
“I was devastated that I could not breastfeed as long as I wanted to. I extended to 6 mo but then stopped out of fear. In hindsight I wish I had breastfed as long as I wanted” | |
Misconceptions about relapse (during pregnancy and postpartum) | “[I wish I had known] relapse wasn't on the horizon for me personally” |
“I do wish that I had known that relapses were common post pregnancy” | |
MS effect on pregnancy and vice versa | “I wish my neurologist had been more comfortable with MS in general (at the time was a general neuro I saw) or knew more about MS/pregnancy” |
“[I wish I had known] that pregnancy is protective of MS in some ways” | |
Desiring more information about DMTs and pregnancy | “I wish there were more studies on medications in pregnancy and studies like this for reassurance/advice on what others have been through!" |
“I was frightened the pregnancy would complicate my MS and that I may have injured my child by being on avonex” |