Earlier this week, I read a post on Facebook about parenthood. Shea Meagle is a 27-year-old who lives with SMA. She was left upset after visiting The Genetics & IVF Institute in Fairfax, Virginia.
Dr. Laurence Udoff met with Shea and her mother. Udoff had never met a patient with SMA before. He knew very little about the disease. Meagle prepared a document outlining her wishes and read it aloud.
After a brief discussion Udoff told Meagle that the clinic couldn’t help her due to her disability. In addition, he said he would be unable to oversee her treatment. Finally, he told Meagle that the anesthesiologist would reject her request for egg removal, and she probably wouldn’t survive the procedure.
SMA is an autosomal recessive neuromuscular disorder that causes increasing proximal muscle weakening due to spinal cord loss of alpha motor neurons. It is characterized by widespread muscular atrophy and weakness. The muscles of the proximal limbs are the most impacted.
The rate of maternal and fetal problems in mothers with SMA is not higher than in the general population. Prematurity and cesarean sections are more common among the pregnancies due to decreased muscle and ventilatory function. Additionally, no harmful impact on the development of the fetus could be found according to a study done by The Journal of Neurology.
At the end of the appointment Udoff told Meagle that he was mearly providing her with facts. He then implied that it would be unethical for someone with SMA to raise a child. Disabled people should be able to make their own decisions about parenthood.
Pregnancy is common among disabled people in the U.S. Willie Horner-Johnson, an Oregon Health and Science University professor of public health, co-authored a new study on health disparities among pregnant disabled people. Horner-Johnson and her colleagues found that more than 20% of all individuals who give birth in the United States identify as having a disability.
As a woman with Cerebral Palsy, I’ve often considered having children later in life. I do wonder if society would consider me unfit for motherhood because of my Cerebral Palsy. No woman is inherently unfit to be a mother simply because she has a disability. Interestingly, no medical professional has ever asked me about pregnancy or if I want to have children.
My biggest fear is that my child would resent having a disabled mother. I wouldn’t be able to go down slides with them or pick them up if they fell. Caring for a child entails much more than just meeting their physical needs. I would do my best to raise my child to be a happy, well-adjusted, and caring citizen.
Cerebral Palsy does not preclude me from having a child if I so desire. I may have to come up with creative parenting solutions, which is fine with me. There are many different available for parents with disabilities. They include custom strollers and lower cribs.
I hope that if I ever have a child, they would grow up knowing that their mother loves them and does her best for them. Regardless of what society thinks, all that would matter to me is that my child knows that they are loved unconditionally.
Arrache, Stephanie. “Wheelchair Accessible Tips and Tricks I Learned as a First-Time Parent.” New Mobility, United Spinal Association, 1 Dec. 2016, https://newmobility.com/wheelchair-accessible-tips-first-time-parent/.
Donnelly-DeRoven, Clarissa. “1 In 5 Births Nationwide Are to People with Disabilities, But These Patients Don’t Always Get the Care They Need.” North Carolina Health News, North Carolina Press Association, 25 Oct. 2022, https://www.northcarolinahealthnews.org/2022/10/25/1-in-5-births-nationwide-are-to-people-with-disabilities/.
Abati, Elena, and Stefania Corti. ‘Pregnancy Outcomes in Women with Spinal Muscular Atrophy: A Review’. Journal of the Neurological Sciences, vol. 388, Elsevier, May 2018, pp. 50–60, https://doi.org10.1016/j.jns.2018.03.001.
D’Amico, Adele et al. “Spinal muscular atrophy.” Orphanet journal of rare diseases vol. 6 71. 2 Nov. 2011, doi:10.1186/1750-1172-6-71
Meagle, Shea. Medical Discrimination Due To Disability Facebook, 22 Jan 2023, 7:07 PM. Accessed 26 Jan. 2023 https://www.facebook.com/1075622202/posts/pfbid02E5QK5HHv7y4457GuyDsVPyn37wuKMHFwG1ab5cCmbKZfmCy8aNkajEmw34D8z5pl/
Rudnik-Schöneborn, S et al. “Pregnancy and spinal muscular atrophy.” Journal of neurology vol. 239,1 (1992): 26-30. doi:10.1007/BF00839207