Woman Care for Teens and Ladies with Special Needs,
With Dr. Anne Camber, OBGYN in Libby, Montana
Article written By Sherry Bushnell with Dr. Anne Camber, OBGYN in Libby, Montana
One of the challenges we think about as a mother of a daughter with disability, is appropriately managing her woman-care needs.
Granted, for some moms and their daughters it is no big deal. Things come naturally and no problems exist. Unfortunately adult women with disabilities are one of the most neglected people groups in the United States in the area of reproductive health. Many are not receiving adequate preventive or medical care. Our family has experienced this sort of confusion with our daughter, Sheela, who is now 22 years old. (Sheela has given us permission to share her story in part. She hopes that it will give others courage to seek medical care and not give up finding what moms and daughters need for a healthy life. Because she is blind, writes in Braille, we guessed that you probably can’t read that, so mom wrote her story, with Sheela’s input and comments.)
Sheela’s story: We adopted Sheela when she was 22 months old from what was Madras, India. She was born without eyes and we thought that she was exceptionally beautiful in spite of having no eyeballs. She has Anopthalma and mild mental disability. After we brought her home, a friend who was a physician asked offhandedly, “What else is she missing?” We sort of laughed it off…
Into her teens Sheela was still wetting her bed. We tried just about everything. I guess the best thing we ended up doing was just waiting. We allowed her to change her own sheets and to take full charge of her bedding. At age 9, it was rarely an issue during the day.
Our family lived in a very rural community and we had no insurance at the time. But being about desperate watching her disappointment in herself, we went to a local doctor. He examined her. He seemed uncomfortable and mentioned that she had a very big hymen, but that everything looked normal to him. That was all.
Since babyhood, Sheela has had to strain to get urine out. It often took her a long time to empty her bladder. I guess with all the other RAD behavior things we were dealing with her at the time, we just chalked it up to more strange stuff. She was always basically healthy and did not complain of pain.
When she was 16-yrs-old, she went to stay in VA, at a wonderful place called Faith Mission Home. Her care-giver was Barb Hershberger and Sheela bonded closely with her. We look at this as sort of her “college”, being mildly mentally impaired and real college not being an option. We wanted her to have a chance to work through some RAD behaviors and to take some school and music classes. This separation was very much needed, as we were facing some difficult family situations, involving RAD attachment behaviors, and ongoing habits. Sherry was also starting midwife school and would be away from home a bit.
We fully expected Sheela to finally start her monthly period while she was there, but when she was ready to come home at age 18, it still had not.
I, as a mother, was becoming concerned about the no period thing, plus the straining at urinating and hefty weight gain she had accumulated.
We brought her home to Idaho and immediately got her into an OBGYN for some help.
Long story made short, she had no internal female parts. At all. Her urine was expelled from a very narrow, small urethra from where her vagina and uterus should have been. Her kidneys are small, but functional.
Now, you might ask, “Why wasn’t she examined before?!” Perhaps if you have had a teen with RAD, you might understand what a challenge this might be. Plus, all had appeared normal when she was younger during her initial Dr.’s exam. As she was in no pain, and her nightly wetting was getting better. Honestly, we were not concerned until her period did not start.
The first step was to get an ultrasound. This located 2 “objects” that could have been any number of things, but were not looking like anything familiar. They ended up being 2 “unidentifiable something's” of sorts, in the area that should have had ovaries, a uterus and a vagina.
Of course, as a mother, I felt horrible that this had not been found out earlier. I am now fully aware that my “hoping-everything was-fine” attitude was not productive. It is Sheela and I’s hope that we can share with you a reason to help our special needs daughters become more aware of their own bodies and become confident to care for our woman anatomy, without it being a big deal.
For some young adult woman, this might mean education about managing their periods. For some severely disabled women / teens, it might mean becoming patient with their caregivers, while they are assisting them with their monthly cycle needs.
There is concern that many disabled women are over-looked. Their fears are negated, or their understanding is lacking about how to get help.
Admittedly, women’s reproductive health is a hard subject to broach, because like in Sheela’s case, perhaps symptoms or problems have gone on a long time unnoticed. Or maybe the symptoms are constant and has become a part of who they are and their care needs. Quality of life is a big deal these days. We think it should be for our special women too.
Here are some suggestions. An article in greater detail can be found on the NATHHAN web site at www.nathhan.org. Click on Articles by Subject on the left side of the home page and then on Woman Care.
Get on a schedule for women care.
Get to know a Dr. you can trust. Understanding and patience goes further than the perfect set-up for disability.
Both I as a midwife and Dr. Anne Camber, a wonderful OBGYN in Libby, Montana, (who also has a heart for helping disabled women and their care-givers find the help they need) are willing to share with you suggestions in a general sense. We’d like to help you get the courage to confidently get going in a positive direction.
Some of the issues you might need addressed may be beyond our ability, without personally seeing a patient. However, suggestions for managing a period or ideas of helping a family cope with issues surrounding getting appropriate help, can be addressed to “Dr. Camber or Sherry” and sent to Sherry’s private e-mail firstname.lastname@example.org