I have Spina Bifida. It’s not a death sentence, I have a more severe form than a lot of people with Spina Bifida. In 1991, most women did not know they were having a baby with Spina Bifida, and when the baby was born, often doctors would recommend letting the baby die of infection from the open and exposed spinal cord. Now, not only can you find out the baby has Spina Bifida around halfway through pregnancy, many times fetal surgery is an option. It wasn’t an option until the late 90s/early 00s. Even with the option of fetal surgery or just having the baby, Around 70% of babies who are found to have Spina Bifida are aborted – and it’s normally the first thing that doctors recommend… in 2018.
Portrayal of Spina Bifida on TV is rare, but it’s happened twice on Grey’s Anatomy. Grey’s is my guilty pleasure even though it’s inaccurate, dramatic and EVERY REGULAR DIES. Back when Meredith and Derek adopted their daughter from Africa, she was said to have Spina Bifida with clubbed feet. Once they did the shunt surgery and her casts were off it may have been mentioned one more time, but that story line faded and she’s got no issues whatsoever. That doesn’t happen to ANY kid with Spina Bifida. If you watched the series starting now, you’d never know that even happened. I even had to go back to make sure it actually happened. I know, it’s a television show, plot holes are common, but it would’ve been nice to be represented at least a little
On a more recent episode, there was a mother who has tomophobia (Fear of surgery). That’s fine, it showed something real. This soon-to-be mother was pregnant with a child with Spina Bifida, and a candidate for fetal surgery to close the hole in the back to potentially lessen the severity of Spina Bifida. I have NO problem with this. It’s up to the mother whether they want to go through this OPTIONAL surgery. It may improve some movement, and allow them to walk (normally with braces). It’s the mother’s choice. It’s a great medical advancement.
However, the doctor in the episode seem to BULLY this poor mother-to-be into the surgery making it sound like it was the ONLY option for her baby’s survival. The mother is afraid of surgery, and you’re telling her the baby won’t have a good life without it. In a conversation with my own mother, she said it’s terrible that the doctor on the show felt the need to “play God” when the baby could be born and still live, but any time you go into a surgery, there’s a risk of losing the baby, or the mother, or both.
Beyond that, fetal surgery is SO NEW, those babies who first had it are just now turning into adults, and no one knows how fetal surgery affects you going into adulthood. I know a lot of people with Spina Bifida who can walk with braces, only to have to go full time to a wheelchair in their 20s/30s. So is prolonging the time to go to a wheelchair even fair to the child? I know if I were able to walk in the first place and to lose something I had, I probably would go into major depression. I’m okay with myself and my disability because I can’t miss something I never had.
Walking with braces HURTS too. I did when I was a child up until sixth grade. I went to physical therapy twice and week, and while I didn’t mind physical therapy that much, I HATED when I had to put on that brace and walk around. I fell so many times. It was great for my parents because they did get to see me stand up, and I’m not traumatized, but it wasn’t like I was always in my brace and it wasn’t a practical option for every day life. I don’t mind using a wheelchair… except when things are 10 feet high.
Children with Spina Bifida regardless of what level/severity are still likely to have hydrocephalus, need a shunt placement, and scoliosis and need back surgery to correct it. I almost died from complications of back surgery when I was 12. I’m still glad I had it. There are necessary surgeries, and unnecessary ones. Doctors will recommend a million of them to you, and it’s okay not to take them. If I was terrified of surgery I would not let a doctor tell me I need to have fetal surgery for my baby with Spina Bifida because there are plenty of us living great lives.
Doctors also shouldn’t go to patients homes and stalk them (yes, I know that was just for the drama of the show). They also should NEVER say your child will have a “better chance of normal” to scare an already scared mother into a surgery she doesn’t want. The patient checked herself out because she didn’t want it. That should’ve been the end of story. Instead, they continued to make it look like people with disabilities don’t have worthwhile lives.
My life is worthwhile – and I say this while I’ve been bed ridden for over six months. Six months out of my lifetime IS NOT HORRIBLE. It’s annoying, boring, a little depressing at times, but it’s temporary. You can get in a car accident and be in the hospital for a year. You can become disabled in an instant. The media SHOULD NOT be portraying disability as a burden, a lesser way of life, or depressing. I know able-bodied people who have way more depressing lives than I do. It’s perspective. My life is fulfilling and I don’t want to learn how to walk, because I’d have to relearn how to live.
Media controls our ENTIRE life and seeing disability portrayed negatively on one of the TOP SHOWS ON TELEVISION is so disheartening. It shows little progress to inclusion. It further tells society that we’re not worth it, we’re sickly, we’re not equal humans. Yet, 20% of our population is disabled. In such a “progressive” show, I expected more and had the mother agreed to fetal surgery, it’d be okay. But not the bullying a mother into it, because her child would’ve probably been just fine without it.