I'm a 26 year old woman from Oklahoma City with unilateral class A PFFD in my right leg. I had a Symes amputation and bone fusion when I was 14 months old. I am now working on my Ph.D in philosophy at Southern Illinois University in Carbondale and wearing an above-the-knee prosthetic with a very basic knee joint and foot and a fairly involved cosmetic cover. I am very physically active--my preferred activities being cycling, swimming, weight lifting, and hiking. With the exception of hiking, I do most of my activities without my prosthesis and so my main concerns with it are limited to comfortable walking, adeqaute cosmesis, and as natural a gait as possible. I would love to experiment with an athletic leg but unfortunately do not have the kind of insurance plan that would allow me to obtain one and probably won't for some time! But, I'm satisfied with things as they are now. I grew up in a fairly middle class family; my parents got divorced when I was a year old and my mom raised me for the most part. I was always lucky enough to have access to good prosthetists and to always have a prosthesis that fit. Everyone in my family has always been supportive, but my mom did choose to handle the course of my treatment and the inevitable personal difficulties that arose for both us during my childhood on her own. She did an amazing job; I was never discouraged from pursuing any activity that interested me, and while I was sometimes discouraged by the limitations resulting from my disability, I was always encouraged to push my physical capabilities to their limit. I played softball and basketball as a child but the only sport I ever became serious about was gymanstics, in which I was competitive for years. Any parent of a child with pffd should take note: it really is best not to set limits on your child's physical activity--even if you think that your child is interested in a potentially dangerous activity-- such as gymnastics, tree climbing, pole shimmying, etc! Let your pffd child test his/her limits. At the same time, do not simply pretend that he/she does not have a disability. Honestly address the fact that there are some things that are difficult and/or impossible with pffd, and that while pffd is far from being the end of the world, it is still a serious and difficult disability to deal with... While I was never teased in school for having one leg, my adolescent years were certainly difficult. I could not help but be self-conscious to the point of pain about my condition and was at times deeply depressed. However, I still tried the things that I wanted to do and was generally very much rewarded for my efforts. I attended a magnet school for gifted and talented children and was very competitive in my academic work. Also, while I was generally very worried that boys and men would not want to date me because of my leg, I always had a boyfriend in high school. And I always went to the prom! I was also lucky enough to have good friends--some of whom I am still close to. These patterns continued as I began attending college, and now, in graduate school I am pursuing a course of study that is deeply meaningful to me and that I love. I am engaged to a wonderful young man who is also in my program here, though we have no immediate plans for a wedding. I do not know whether or not we will have children, but I have become curious about the experiences of other pffd women who have gone through pregnancy and childbirth, and what their experiences have been as mothers. And of course, I am intersted in the experiences of all people who have pffd. Feel free to contact me with questions, stories, etc. I don't currently have any friends with pffd and I'm finally eager to meet some!
Comments
very nice story
Dear Sara,
Thanks a lot for sharing your story , It is incredible , This is Sonia a woman 35 years old ,I am a lucky woman too as I accepted my condition and I never say why I am ...
I did many activities like others and I married last year , I am not sure about if can I have a baby or not , but its my desire to have .I wish u luck always and peace be with you .
Soni
I am a 34 year old woman
I am a 34 year old woman with unilateral pffd in my left leg. My treatment was identical to yours and have been wearing a prosthetic since I was 3. With regards to your questions on pregnancy, i am 3 months pregnant with my first child. I have virtually no problems getting pregnant, as we were successful trying by the second month. I too have looked for other amputees to share pregnancy stories, and have found virtually none. My prosthetist and I have a plan. Essentially, as my body changes, he will make test sockets which are relatively inexpensive and can be made in a couple of weeks. These test sockets can be quickly added to my exisitng knee and foot components and should allow me to stay in my prosthesis throughout my pregnancy. As of yet, I am still wearing my current prosthesis comfortably. Perhaps we can stay in touch and I can keep you informed as my pregnancy progresses?
Book & Pregnancy
I have two children by vagina birth. The oldest was 9lbs. 4 oz. and my doctor did not expect her to be so big, but I had no significant problems. I used crutches for the first pregnancy (my prosthesis has not been successful since hip/femur surgery did not heal at age 18) and I used a wheelchair and crutches during my second pregnancy. My experiences are documented in a book called The Disabled Woman's Guide to Pregnancy and Birth by Judith Rogers. It is a very good book for women and their doctors. My book name is avialable by request. Just email me and I'll email it to you. The book is available at most book stores or can be ordered through [[http://www.lookingglass.org]].
Through the Looking Glass (web site above) is an organization for parents with disabilities and they have many resources on their web site.
As far as caring for a child, PFFD had no impact. I had babysat many children prior to having my own and often babysat youngsters for several days while their parents were traveling so my only worries were typical parent worries.
marriage, pregnancy, et al
Cindy
I am a 52 yr old PFFD Symes amputation with AK prosthetic, married, with 3 grown children, - all of whom I gave birth to vaginally with no anesthesia. Just because the PFFD side of my pelvis is "slightly" smaller than the other side, it is not outside of the "normal" range. My smallest baby was 7 lbs 6 oz, my largest 8 lb 4 oz, and the boy in the middle was 8 lb 3 oz with a 13" chest.As a consumer you need to be aware of your birthing hospital's reputation, if they are known as a hospital that treats "high risk" pregnancies, then you can guarantee that you, with a birth defect, will be classified as "high risk" no matter what else is happening with your labor and delivery, and will be the first candidate for a C-section. I kid you not when I tell you that the only thing that saved me from that fate was a husband that threatened the attending physician, and my own insistence that the practice send more Doc's to the hospital.
My advice is to locate a family practice physician to be your primary care physician during this time. Most FP's have admitting privileges at hospitals in both OB/GYn and Pediatrics. They will be able to see both you and the baby together for the early post-natal exams (1 Dr visit easier to schedule than 2) and they tend to be more open in terms of the patients natural ability to have/bear children than others.
In addition, you may need to have the attachment mechanism of your prosthesis modified. Pregnancy can change your water-retention, which effects your stump size/shape, which effects your fit, which means you may have to change yuor attachment mechanism. I had an elasticized Silesian belt attached to the prosthesis, rather than a non-elasticiized version, and the elasticizd belt was longer than my regular one to accomodate my growing belly.
Follow your ob/gyn's eating guidelines to the MAX during this time - you want to gain the least amount of weight the drs recommend, not less than, but not more than, either. FYI - I gained 27 lbs with the 1st, 35 with the 2nd child and a whopping 45 lbs with the 3rd. (And I felt that extra 10 lbs - the leg really did not fit at all the last month , I just "sucked it up" and moved on, knowing that I would lose the weight once I delivered the baby.)I needed to be mobile(with a 5 yr old and a 3 yr old) throughout the pregnancy, so there wasn't the option of not wearing the prosthesis.
Being a PFFD mother is easy - do what comes naturally - I have been known to say to my kids " of course I'm not "handicappded", and yes, I do wear an artificial leg. Which definition I firmly believe! However, in the eyes of most of the community, I am considered to be "disabled". All tough definitions for a 3 yr old to comprehend, but, guess what - they do - even if they can't express it - here's hoping that you understand my distinctions. It's all about what YOU are comfortable with; but remember, your attitude is shaping not only your children, but also every child in their school. (at the very least, their friends - at the most, you are an example for every teacher in every classroom; "heavy burden" no different than usual). At this time, it is important to remember that you are a living symbol of a "disabled person" to these young kids. They have not had the life experiences that would have brought them into contact with other disabled people. You must appear to be the model citizen in this regard.Whatever your definition is for that.Be positive and upbeat.
Hope this wasn't too much info. Looking forward to hearing from you again as I'm sure I didn't answer all your questions.
Cindy