My daughter will be 21 soon and we are looking for some support, advise on anyone who has PFFD and is pregnant. She is approximately 6 WKS pregant. We are pretty excited but concerned at the same time. Please write to me and let me know. Thank YOU.
Congratulations! My first pregnancy was fairly easy and my second was more difficult (mainly because I was not in as good of physical shape as with the first...I did not have time to exercise and take as good of care of myself). However, both pregnancies are documented fairly well in a book entitled "The Disabled Woman's Guide to Pregnancy and Birth" by Judith Rogers. I will email you my "book name". There are other disabilities and some similar to PFFD, in fact I did not even list PFFD specificly. You would probably find this book helpful and it is available at a number of places including www.lookingglass.org
If you are not familiar with Through the Looking Glass, you should check out their web site above. You may find additional resources you would find helpful.
Feel free to ask me any questions that you have, if I know the answer, I'm more than glad to share.
Thanks for responding. I've looked through internet trying to find someone that has experienced this. My daughter will be 21 (tomorrow actually) and I would like to find her all the help she can get. Did you need any special health care? Were you considered a high-risk pregnancy? Could you deliver naturally? There are tons more questions I can ask. But I'll wait for your response. Thanks.
My first pregnancy was considered high risk, but (unrelated to PFFD) I had a dermoid cyst that had to be removed at 16 weeks into the pregnancy. The pregnancy was fairly easy and I did swimming and yoga to stay in shape. I was overdue 2 weeks so the last 4 weeks were difficult because I lost my center of balance. It had been shifting very slowly and since I am an amputee balancing on one leg is important. I was able to still do all my own care, but had to use a shower chair and we added grab bars in the bathroom.
The second pregnancy was harder, but I was not in shape and I did not exercise. I lacked energy and was constantly losing my balance. My stump would swell and my skin on my stump would crack. Unrelated to PFFD, I was grumpy, had acid reflux and was so glad to get to my delivery date, but I ended up almost 2 weeks overdue again.
I do not wear a prothesis because of the poor condition of my hip....it will not support weight and the motion of the leg without the metal plates and screws loosening SO I did not have to be concerned about managing it. I used crutches during my first pregnancy for all mobility (just as I had pre-pregnancy) and I used my wheelchair for the second pregnancy. Delivery both times went well and extremely normal. I did not have the doctor order a special amputee stirup either time as my hip is so bad it locks up all the time so I just let it do its thing.
After my first pregnancy I did get physical therapy to regain my range of motion in my hip, which had been reduced...I assume by the pregnancy weight. I did not take the time for this after my second pregnancy and wish that I had done so.
By the way, my first child was over 9 lbs and the hip surgeries all held perfectly. My second child was smaller, but everything was fine after her delivery as well. I have arthritis pain and with my first child the pain stopped during the pregnancy and I did not need meds....it was wonderful. With the second, the arthritis pain continued so I went without pain meds.
Congratulation! My daughters are now 5 and 4 and 4. The first pregnancy was great. A very normal pregnancy. The only concern I had was with the increase of baby weight that my prosthesis didn't fit as well. So I had the prosthetist shave out any extra he could. I also wore compression socks to bed to insure that I could get into my leg in the morning. My second pregnancy was with twins. In respect to my PFFD I had no problems. Is was after the two pregnancies that my prosthesis didn't fit well and had to get a new on. I honestly can't remember having much back pain or any problems in regards to my leg.
i i'm so happy for you! i'm only sixteen, but i've dreamed of having a baby one day. you have really opened my eyes! my doctors have told me that not alot of PFFD patients have gotten pregnant.
hi all. i'm new around here, this is my first post.
first of all, congratulations on your future grand-baby! i know that if you're anything at all like my folks, you will end up spoiling this child rotten while being the best grandparent out there. :)
i'm a 29-yr old unilateral class D PFFD mom. my son will be 8 next month, but he was a ridiculously healthy 8.5 lb bundle of joy when he was born, almost 28 hours after going into labor. i was so terrified that he was going to be born like me, because i was one of the mislead ones, told by small town doctors in western PA that it was genetic. like others, the only real issue i had was an ill-fitting socket, but i also gained a ton of weight with him [mostly due to a summer pregnancy in humid Cincinnati, i think, or at least that's what i told myself as i stepped on the scale...]. actually, the worst of it, i thought, was after he was born, and losing the weight - having to go back for fittings so many times. ugh.
i went in with a 'natural, with an open mind' mentality, which was good, because he was a little reluctant to come out, and i had hard labored for a long time, so they ended up inducing me and giving me drugs. otherwise, he was a vaginal birth, no c-section, no high risk, nothing. i had him at a normal birthing room at a normal hospital with normal doctors, nurses and other staff. my doctor was convinced that i would be just fine, and i was convinced that i would be just fine. the only concern i had when we returned home was with the prosthesis itself - my knee at that time was one of the locking types, and sometimes it would just give out from underneath me. thank god it never happened, but of course, i was always terrified of this happening when i was holding my baby. the one thing that others [including my then-husband] were concerned with was the hop: while pregnant, depending on your prosthesis, getting up to pee in the middle of the night every night isn't always easy when you have to put yourself back together to do it, so at times i would just light-hop to the bathroom. everyone thought i was going to kill him or something, but he turned out just fine, and i think it actually prepared him for mom's uneven walking while carrying him as an infant. ;)
the thing i've learned is that having PFFD doesn't stop you from doing things, it just stops you from doing them like everyone else does. we just roll a little different, you know? as long as she has a loving and caring partner in this, the baby and she will be just fine, from my experience. congrats again!
Hi Jilly,
I just want to thank you for replying to my blog. I'm still not sure of the technical terms in regards to my daughters pffd. She is missing her hip socket, no hip only her knee and her shin bone this is on her left side. But we are very optomistic and excited about the up-coming baby. My daughter is just starting to get a belly and she is halfways there. I was concerned as well as to the hopping. She still does that but only small hops. Scary for me, though. Anyways please write back I'm interested in asking you more questions.
Mommalou
Congratulations on the great news. Your daughter is probaby due soon, if she has not had the baby already.
I have had two healthy, perfect little boys. They are now 4.5 and 2.25 years old. The boys wrestle and blame each other for their messes. Typical kid stuff. I worried about whether I would have to have a c-section because I had an OBGYN tell me that the shape of my hips is irregular. That scared me. In the end, I had a one-hour labor with my first son, no epidural, natural birth. It HURT, but it was wonderful to be able to hop to the bathroom when it was over :-) My delivering OBGYN never assumed that I would need a c-section by the way. My labor was so fast and easy, that I wonder whether the PFFD actually helped :-)
My biggest concern was weight gain during the pregnancies. I gained 29 lbs with the first and 8 with the second. (Yes, 8--I was very nauseous, but not related to PFFD.) I lost 15 before I gained it back, then put on 8 from the starting point. Still, the prosthesis did not fit well toward the end. I am lucky in that mine had a liner, and I removed the liner when I started to gain the volume. I swelled the first few days after the boys were born, but the swelling went away and then I had only about 10 lbs to lose at the end. (Well, I was underweight after the second one, but my shape was not where it was....)
My pregnancies did not have any special circumstances because of the PFFD. I had, what I believe were "typical" problems--back, hip, everything pain :-) At night, I would get on my "knees" to go to the bathroom, or all fours if I just could not stand it.
For delivery, I did create a Birth Plan, that I shared/created with my doctor and presented to the hospital upon admission that indicated that I would like crutches and other accomodations that might make a labor/delivery easier for someone with PFFD--they seemed the same as what an amputee would have, even though I never had an amputation. (Seat in the shower....) These were all things I discussed with my doctor before. The nurses asked if I wanted to chance getting my prosthesis "messy" and offered to help me take it off, although I did it myself. I guess I was not thinking about all of that mess soaking in to the cosmetics until I was actually at the hospital and my water broke. It occurred to me only when I was in labor that I would not actually be able to labor like women I had seen in the birthing videos, walking the halls, squatting, bouncing on the ball. If I would make a mess of the prosthesis or be bedridden during labor. Luckily, I was very open minded, it went SO FAST, seriously, one hour, that I was pushing before the anesthesiologist could get there.
I wish your daughter a very easy, delivery and a calm child :-) My boys were awesome, easy babies. They are born with no extremity abnormalities, although my second son was born with one undecended testicle, if you count that as an "extremity" abnormality! It has nothing to do with PFFD. It turns out that it runs in my mom's side of the family and my brother and several cousins have had the problem. When he had the testis decended, and it was normal....all is great.
In a lot of ways, I think it will be easier for your daughter than it was for you. I have compassion for my mom now that I could never appreciate before--we will do anything for our kids to be healthy. So many times when I was growing up, my mom told me that if she could have given me her leg, she would have gladly. I never believed her until I had my own son. Once your daughter sees that her little one is heathy, she will not care about what she went through for the little one. I would gladly have PFFD than give birth to a baby that has it. As a mom you, might agree.
The hard part is over for you, Grandma :-) (That is, if a mother ever stops worrying about her kids, which I imagine, not.) Your daughter will do great, the little one will be healthy. You just have to pick out some cute clothes :-)
Hi, I'm 27years old. And just found out I'm pregnant. I'm due in Jan.2009. I was wondering how everyone handle walking and carrying the baby towards the end. Did anyone have to be off of work or anything? I'm worried because my employer sounds like they may let me go, if I have to be off of work longer than the "average" person. Please let me know,
Thanks,
Shannon
Comments
PFFD & Pregnancy
Congratulations! My first pregnancy was fairly easy and my second was more difficult (mainly because I was not in as good of physical shape as with the first...I did not have time to exercise and take as good of care of myself). However, both pregnancies are documented fairly well in a book entitled "The Disabled Woman's Guide to Pregnancy and Birth" by Judith Rogers. I will email you my "book name". There are other disabilities and some similar to PFFD, in fact I did not even list PFFD specificly. You would probably find this book helpful and it is available at a number of places including www.lookingglass.org
If you are not familiar with Through the Looking Glass, you should check out their web site above. You may find additional resources you would find helpful.
Feel free to ask me any questions that you have, if I know the answer, I'm more than glad to share.
PFFD & Pregnancy
Thanks for responding. I've looked through internet trying to find someone that has experienced this. My daughter will be 21 (tomorrow actually) and I would like to find her all the help she can get. Did you need any special health care? Were you considered a high-risk pregnancy? Could you deliver naturally? There are tons more questions I can ask. But I'll wait for your response. Thanks.
Mommalou
Info
My first pregnancy was considered high risk, but (unrelated to PFFD) I had a dermoid cyst that had to be removed at 16 weeks into the pregnancy. The pregnancy was fairly easy and I did swimming and yoga to stay in shape. I was overdue 2 weeks so the last 4 weeks were difficult because I lost my center of balance. It had been shifting very slowly and since I am an amputee balancing on one leg is important. I was able to still do all my own care, but had to use a shower chair and we added grab bars in the bathroom.
The second pregnancy was harder, but I was not in shape and I did not exercise. I lacked energy and was constantly losing my balance. My stump would swell and my skin on my stump would crack. Unrelated to PFFD, I was grumpy, had acid reflux and was so glad to get to my delivery date, but I ended up almost 2 weeks overdue again.
I do not wear a prothesis because of the poor condition of my hip....it will not support weight and the motion of the leg without the metal plates and screws loosening SO I did not have to be concerned about managing it. I used crutches during my first pregnancy for all mobility (just as I had pre-pregnancy) and I used my wheelchair for the second pregnancy. Delivery both times went well and extremely normal. I did not have the doctor order a special amputee stirup either time as my hip is so bad it locks up all the time so I just let it do its thing.
After my first pregnancy I did get physical therapy to regain my range of motion in my hip, which had been reduced...I assume by the pregnancy weight. I did not take the time for this after my second pregnancy and wish that I had done so.
By the way, my first child was over 9 lbs and the hip surgeries all held perfectly. My second child was smaller, but everything was fine after her delivery as well. I have arthritis pain and with my first child the pain stopped during the pregnancy and I did not need meds....it was wonderful. With the second, the arthritis pain continued so I went without pain meds.
PFFD and Pregnant
Congratulation! My daughters are now 5 and 4 and 4. The first pregnancy was great. A very normal pregnancy. The only concern I had was with the increase of baby weight that my prosthesis didn't fit as well. So I had the prosthetist shave out any extra he could. I also wore compression socks to bed to insure that I could get into my leg in the morning. My second pregnancy was with twins. In respect to my PFFD I had no problems. Is was after the two pregnancies that my prosthesis didn't fit well and had to get a new on. I honestly can't remember having much back pain or any problems in regards to my leg.
Good luck!
ToriB
that is so cool!
i i'm so happy for you! i'm only sixteen, but i've dreamed of having a baby one day. you have really opened my eyes! my doctors have told me that not alot of PFFD patients have gotten pregnant.
hi grandmommalou!
hi all. i'm new around here, this is my first post.
first of all, congratulations on your future grand-baby! i know that if you're anything at all like my folks, you will end up spoiling this child rotten while being the best grandparent out there. :)
i'm a 29-yr old unilateral class D PFFD mom. my son will be 8 next month, but he was a ridiculously healthy 8.5 lb bundle of joy when he was born, almost 28 hours after going into labor. i was so terrified that he was going to be born like me, because i was one of the mislead ones, told by small town doctors in western PA that it was genetic. like others, the only real issue i had was an ill-fitting socket, but i also gained a ton of weight with him [mostly due to a summer pregnancy in humid Cincinnati, i think, or at least that's what i told myself as i stepped on the scale...]. actually, the worst of it, i thought, was after he was born, and losing the weight - having to go back for fittings so many times. ugh.
i went in with a 'natural, with an open mind' mentality, which was good, because he was a little reluctant to come out, and i had hard labored for a long time, so they ended up inducing me and giving me drugs. otherwise, he was a vaginal birth, no c-section, no high risk, nothing. i had him at a normal birthing room at a normal hospital with normal doctors, nurses and other staff. my doctor was convinced that i would be just fine, and i was convinced that i would be just fine. the only concern i had when we returned home was with the prosthesis itself - my knee at that time was one of the locking types, and sometimes it would just give out from underneath me. thank god it never happened, but of course, i was always terrified of this happening when i was holding my baby. the one thing that others [including my then-husband] were concerned with was the hop: while pregnant, depending on your prosthesis, getting up to pee in the middle of the night every night isn't always easy when you have to put yourself back together to do it, so at times i would just light-hop to the bathroom. everyone thought i was going to kill him or something, but he turned out just fine, and i think it actually prepared him for mom's uneven walking while carrying him as an infant. ;)
the thing i've learned is that having PFFD doesn't stop you from doing things, it just stops you from doing them like everyone else does. we just roll a little different, you know? as long as she has a loving and caring partner in this, the baby and she will be just fine, from my experience. congrats again!
Thanks for your encouraging remarks
Hi Jilly,
I just want to thank you for replying to my blog. I'm still not sure of the technical terms in regards to my daughters pffd. She is missing her hip socket, no hip only her knee and her shin bone this is on her left side. But we are very optomistic and excited about the up-coming baby. My daughter is just starting to get a belly and she is halfways there. I was concerned as well as to the hopping. She still does that but only small hops. Scary for me, though. Anyways please write back I'm interested in asking you more questions.
Mommalou
35 with two boys :-)
Hi Grandma-to-be,
Congratulations on the great news. Your daughter is probaby due soon, if she has not had the baby already.
I have had two healthy, perfect little boys. They are now 4.5 and 2.25 years old. The boys wrestle and blame each other for their messes. Typical kid stuff. I worried about whether I would have to have a c-section because I had an OBGYN tell me that the shape of my hips is irregular. That scared me. In the end, I had a one-hour labor with my first son, no epidural, natural birth. It HURT, but it was wonderful to be able to hop to the bathroom when it was over :-) My delivering OBGYN never assumed that I would need a c-section by the way. My labor was so fast and easy, that I wonder whether the PFFD actually helped :-)
My biggest concern was weight gain during the pregnancies. I gained 29 lbs with the first and 8 with the second. (Yes, 8--I was very nauseous, but not related to PFFD.) I lost 15 before I gained it back, then put on 8 from the starting point. Still, the prosthesis did not fit well toward the end. I am lucky in that mine had a liner, and I removed the liner when I started to gain the volume. I swelled the first few days after the boys were born, but the swelling went away and then I had only about 10 lbs to lose at the end. (Well, I was underweight after the second one, but my shape was not where it was....)
My pregnancies did not have any special circumstances because of the PFFD. I had, what I believe were "typical" problems--back, hip, everything pain :-) At night, I would get on my "knees" to go to the bathroom, or all fours if I just could not stand it.
For delivery, I did create a Birth Plan, that I shared/created with my doctor and presented to the hospital upon admission that indicated that I would like crutches and other accomodations that might make a labor/delivery easier for someone with PFFD--they seemed the same as what an amputee would have, even though I never had an amputation. (Seat in the shower....) These were all things I discussed with my doctor before. The nurses asked if I wanted to chance getting my prosthesis "messy" and offered to help me take it off, although I did it myself. I guess I was not thinking about all of that mess soaking in to the cosmetics until I was actually at the hospital and my water broke. It occurred to me only when I was in labor that I would not actually be able to labor like women I had seen in the birthing videos, walking the halls, squatting, bouncing on the ball. If I would make a mess of the prosthesis or be bedridden during labor. Luckily, I was very open minded, it went SO FAST, seriously, one hour, that I was pushing before the anesthesiologist could get there.
I wish your daughter a very easy, delivery and a calm child :-) My boys were awesome, easy babies. They are born with no extremity abnormalities, although my second son was born with one undecended testicle, if you count that as an "extremity" abnormality! It has nothing to do with PFFD. It turns out that it runs in my mom's side of the family and my brother and several cousins have had the problem. When he had the testis decended, and it was normal....all is great.
In a lot of ways, I think it will be easier for your daughter than it was for you. I have compassion for my mom now that I could never appreciate before--we will do anything for our kids to be healthy. So many times when I was growing up, my mom told me that if she could have given me her leg, she would have gladly. I never believed her until I had my own son. Once your daughter sees that her little one is heathy, she will not care about what she went through for the little one. I would gladly have PFFD than give birth to a baby that has it. As a mom you, might agree.
The hard part is over for you, Grandma :-) (That is, if a mother ever stops worrying about her kids, which I imagine, not.) Your daughter will do great, the little one will be healthy. You just have to pick out some cute clothes :-)
Question
Hi, I'm 27years old. And just found out I'm pregnant. I'm due in Jan.2009. I was wondering how everyone handle walking and carrying the baby towards the end. Did anyone have to be off of work or anything? I'm worried because my employer sounds like they may let me go, if I have to be off of work longer than the "average" person. Please let me know,
Thanks,
Shannon