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Pregnancy & Parenting 

Jennifer Latham Robinson



As a very young child, I tried desperately to avoid feeling self conscious about my limb deficiency, and for the most part that kind of perseverance has paid off. Feeling comfortable in my own skin comes natural to me. But now as a mother and an all-too-observant child, those previously ignored gawkers can become a real thorn in my side. Self doubt and second guesses are part of the package when it comes to being a parent. Add in having a limb deficiency and even the most outgoing and confident person can find themselves sweating in the spotlight.


I was born in 1977 with bilateral Proximal Femoral Focal Deficiency (PFFD), with the right side more extreme and involving deficiency of the tibia and fibula. At that time, parents were often not counseled in these situations and were left to their own devices to handle such unexpected news. My mother tells the story well: “The doctor just said there was something wrong and took you away”. My parents had no idea of what was going on and imagined the worst possible scenarios during the hours that they waited for my return.


Luckily for me, my parents didn’t need counseling to realize they had to raise me to be self-motivated, confident, and independent. As a toddler, I underwent a right above knee amputation and currently wear a prosthesis. My left leg functions fine, even with a relatively short femur. For the most part, I’ve been able to do most everything my peers could do. Growing up, if we weren’t sure I could be successful at something (junior high soccer try-outs come to mind), I tried anyway. When I did have a limitation, I made up for it by developing different skills, like drawing and music.


I grew up in a household where it was good to be a little different, or unique. Living in a house full of artists, we all had very open minds when discussing the concept of beauty. For the most part, I was actually glad to have been born this way. I began to even relish the extra attention and became quite a performer. As I transitioned into adulthood, my parents became more open about what it was like to give birth to me in that hospital years ago and now I understand it wasn’t always as easy as they had portrayed it. But they were strong in front of me, which made me strong. My mother had been through a rough childhood, forced to leave her native country and travel as a minor to the United States with her younger sister, without their parents. My father was a police officer, stoic and hard working. They raised me to believe I could accomplish anything.


Having such strong parents, I had hoped to inherit some of their parenting talents. I was never one of those girls that young children flocked to. Actually, younger children seemed pretty apprehensive around me, mostly because of my physical differences. While other girls were babysitting, I was drawing. Somewhere in the back of my mind I wondered, what kind of mother will I be?


Pregnancy


I met my husband in college and it really wasn’t until then that I felt an incredibly strong urge to have a baby. But suddenly, in my mid-20s, I began to wonder if and how my birth defect would affect my ability to become pregnant, carry a baby, and give birth. I began to feverishly research the internet and sadly found no information on PFFD and pregnancy. I began to imagine all sorts of complications with my pelvis, my hips… and how in the world am I going to walk with a prosthesis while I’m pregnant? Before we attempted to conceive, I knew I wanted at least some assurances. In collecting this information, I realized that these research techniques should be followed by anyone in this type of situation:


Find out more about your diagnosis . I was amazed at how little I knew about PFFD and its related conditions. Researching a diagnosis today is much easier than it was in 1977. An evening on the computer surfing the internet will give anyone plenty of food for thought. However, beware of what you read. There is a lot of inaccurate information out there. Present your findings to your orthopedic physician, if possible, and make sure you understand what you read.
Get your medical records in order . In my case, I requested all my medical records from the Shriners Hospital. It was absolutely fascinating to read and I was able to grasp more clearly the extent of my birth defect. I also requested my most recent pelvic x-rays.


Schedule a pre-pregnancy appointment with an obstetrician. In my situation, the first obstetrician I visited said my case was too complicated for them. Be prepared for some possible ignorant remarks if you are shopping around for an OB. The first OB I visited actually said she felt sorry for me. As you can image, I walked right out. I then went to a highly recommended high-risk OB, who actually researched my condition and records prior to my visit. He assured me there should be no serious problems and suggested I may have to deliver via Cesarean section. He told me to start taking my prenatal vitamins and get rolling.
Get in shape before you get pregnant . Wearing a prosthesis while pregnant will get a little tricky, especially in the last trimester. The healthier a person is pre-pregnancy, the better. Have 15 pounds to lose? Considering taking that treadmill out of the closet? Be sure to get that resolved before you conceive. You’ll thank yourself later.


Begin taking prenatal vitamins several months before you get pregnant . There are some things during a pregnancy that you cannot control. This is one tiny thing you can, and it’s simple. Buy some over the counter prenatal vitamins and know you’re making an effort towards a healthier pregnancy.
If you wear a prosthesis, or an orthosis, let your prosthetist or orthotist know your plans ahead of time . Come up with a flexible game plan early, so your practitioner can start brainstorming solutions to problems that have yet to exist. Be open minded… you may not be able to wear that suction socket at 9 months. Maybe a new suspension system will be required, maybe not. The key is to stay strong and understand you may not be 100% comfortable in your prosthesis or orthosis during your entire pregnancy. The most crucial thing to do is to listen to your body and be honest with yourself.
With this strategy pre-pregnancy, I’ve found you give yourself the best odds at being satisfied during pregnancy. Don’t be fooled, I didn’t pick this information up entirely on my own.


My first pregnancy was a lot harder on my body than the second. My bilateral PFFD involves severe malformation of both hip joints and permanent dislocation. During pregnancy, hormones relax ligaments, loosen the pelvic and hip area, and allow it to spread open during birth. My already precarious hip situation was further complicated by this ligament change, in addition to excessive weight gain, and poor posture. The second time around, I was in better shape pre-pregnancy, and my body went through less anatomical change. I was able to wear my prosthesis throughout my second pregnancy, whereas I began using crutches and a wheelchair at around 5 months with my first. Most importantly, I was very conscious of my weight gain, which was gradual and within the ideal pregnancy weight gain category for my body type.


What made the biggest difference for me was that I knew what to expect the second time around. I also had the opportunity to meet a very inspiring woman prior to my second pregnancy. Seeing how she approached her pregnancies made me realize, maybe I can make this easier on myself in the future. I asked Diane Straub, M.D., M.P.H. , to share her pregnancy story:


“I am an above-knee amputee, acquired traumatically in a motorcycle accident when I was 20 years old. However, I am many, many other things, the most important of which is that I am the mother of two wonderful little people, and I am totally blessed to have them.”


“I actually thought pregnancy would be harder than it was, at least in terms of being an amputee. I had lots of other issues, but the walking was, surprisingly, the least of my concerns. As a physician in training during the first pregnancy, I had a job that required me to be very active for long periods of time and without any significant vacation or sick leave. I had an acute appendicitis requiring surgery and could barely drag myself out of bed during my first trimester, but when I did, I walked fine. I think that continuing to stay very active served me well. I stayed in my original leg until I was starting my third trimester. My ‘maternity leg’ was made from my bike leg, so it wasn’t that expensive, and insurance paid for the changes without requiring an act of Congress. The socket of my new leg looked like it was made for someone weighing 300 pounds! And it actually kind of fit! Over the next few months I definitely noticed the changes. I looked like I had a basketball under my shirt – one that weighed a lot, as I was very ‘tippy’ when I walked. My balance was all off, but even so, I worked full-time until a few days before Emma was born. Again, staying active helped, as walking a lot kept down the volume changes in my stump, requiring only one socket ‘stretch’. I had a pretty rough delivery, so I didn’t really want to wear my leg at all afterwards and used my crutches and wheeled stool at home, But, I had to be back to work within a few weeks. Surprisingly, just in that short period of time, I was able to fit back into my old leg. The walking was uncomfortable and awkward at first, but pretty quickly got back to normal. My second pregnancy was very similar to the first, although the ‘basketball’ came a lot earlier that time!”


Dr. Straub seems to have a hard time believing she had such an influence on me, but she did. Now that I have a 4-year-old and am 8 months pregnant, I get questions from other woman amputees about pregnancy. I realized that it must be on the minds of women everywhere. If the amputee herself isn’t wondering about it, no doubt her mother or sister, or partner may. Nicole is another congenital amputee I know, below knee, who admitted her mother seems more concerned about it than she is herself:


“My Mom has expressed concerns about my becoming pregnant. She says she has always worried about me outgrowing my prosthesis or experiencing pain as a result of the corresponding weight gain. I never thought about it, so I asked my doctor. In response, my doctor told me that my body will know what to do. It will know that the weight must be carried elsewhere and a natural adjustment will be made.”


The level of concern for a female amputee, regarding the anticipation of pregnancy, seems to be related to amputation level, and whether the hips and/or pelvis are also affected. High-level amputees not only worry about the fit of the prosthesis during the pregnancy, but may be concerned about the overall structure of their bodies and whether the areas involved with reproduction are capable of pregnancy and childbirth.


There will be circumstances where pregnancy just isn’t an option, especially where there are serious concerns with the pelvis. This is true in some cases where a woman has experienced severe trauma to that area, or a severe birth defect. There is no doubt that a woman who wants to be a mother, and cannot experience a pregnancy, will feel a sense of grief. Pregnancy, believe it or not, is just the tip of the iceberg. The hardest work, I’ve found, begins once that child is born, or adopted.


Parenting


For me, I was taken back the moment when my daughter became aware that other children were staring at me. In reality, she did not even seem bothered in the slightest about this… just a little curious as to what all the fuss was about. But it was in her pre-school hallways, and at the community pool, that I realized, “Wow, this is kind of bothering me”. Before, sometimes I got a little thrill from all the attention, but now it’s not just about me.


I have learned how to kick into overdrive with the eye contact, with friendly smiles and waves, like flashing signs on my forehead saying, “Hey! I’m nice and don’t be scared!” I admit that acting like this at eight o’clock in the morning can be a little annoying.


In being an amputee, and having a very positive self-image, I have been able to pass this strength to my daughter, and in return, she gives me strength. She is the most empathetic person I know. She perceives more than most 4-year-olds do. In the store, if we see someone that ‘looks different’, she knows they are beautiful and special. If I was born like this for a reason, I have found the reason. Being pregnant was easy. Being the best mother I can be takes a lot more effort.


Dr. Straub is no stranger to this balancing act:


“In terms of parenting, there are some things I may do a little different as a parent. My firstborn daughter seemed to recognize that Mommy couldn’t catch her when she ran away like Daddy could. So, she knew that if she did run away when Mommy told her not to, Mommy would be decidedly unhappy with her behavior and subsequently Emma would be decidedly unhappy. However, a few time-outs fixed that situation. In rare situations where it would be extremely dangerous for her to get away for me, she wore a leash. I used to take my daughter and dogs for walks along the cliffs in San Francisco. My dogs ran free and my daughter was on a leash; people were not sure what to make of this... My son, Jonah, is just the opposite. He recognizes when he is just out of my reach, and bolts, laughing delightedly - sometimes heading right into the street. Jonah now has several leashes and gets lots of time-outs. Additionally, Emma helps me. When he runs, she immediately tackles him. I have enlisted her help in lots of other ways, too. I frequently ask her to go and get things for me. For instance, when encountering a poopy Jonah with his diaper on the floor, I hold him in place and ask Emma to go get a diaper and wipes. I always thank Emma and tell her what a big help she is to Mommy. Most of the time, it makes her feel important and helpful.”


“My children initially didn’t seem to notice my disability very much. My daughter’s pictures of our family usually represent me (when they were stick figures) with only one leg or (now) with two different-looking legs. However, it was just a routine fact of life, similar to Mommy has yellow hair or blue eyes, not one that had any stigma attached. I don’t wear a cosmetic cover on my leg, and we live in Florida where it is too hot to wear anything but shorts, so I inevitably have a band of children following me around asking what happened to my leg. Emma generally gives my story before I do: “My Mommy lost her leg in a motorcycle accident. You can ask her questions if you want to.” I respond in a positive and encouraging manner directly to these inquisitive children (often alleviating much discomfort on the part of the parent). I solicit and answer their questions, and let them touch if they want. Their curiosity appeased, they usually run off to play. Emma learns from that these encounters that there is nothing shameful about having a disability, it is an appropriate subject of curiosity and conversation, and that it is, again, just a basic fact of life like hair color. She has no understanding of any potential stigma. Similarly, she is polite to, but also inquisitive about, other people with disabilities.”


“Both Emma and Jonah understand that I am in some ways ‘differently-abled’. They will tell me to ‘go put your leg on’ in order to go for a walk. Both prefer my ‘soft lap’ (without my leg on) for snuggling together in our recliner to read a book. My children also see that Daddy treats my disability as somewhat of a ‘non-issue’. We have different roles and responsibilities according to our strengths and weaknesses, some of which are related to my disability, the vast majority are not. My disability has given me opportunities to me teach my children that we all have strengths and weaknesses, some of which are visible and some are not; what matters most is that we work together to overcome the weaknesses and we respect each other for who we are. My kids accept me for who I am. The ‘you are the best Mommy ever’ note I found yesterday reminds me that being an amputee doesn’t seem to matter to the two little people whose opinions I care about most.”


Brian, a 39-year-old who traumatically lost his leg below the knee at the age of 13, agrees:


“I have the hardest job I’ve ever attempted. I’m a parent of two boys, ages 9 and 6. Neither one of them as of yet sees me as different, even though they get asked by their friends, ‘What happened to your Daddy’s leg?’ My youngest usually equates me with a transformer or a pirate, which is fine by me. I mean, who didn’t want to be a pirate growing up? My 9-year-old is autistic, so for him my difference is a fact and nothing more. Children in the community are the most curious and I try to never walk away from a child I hear asking his parents a question about my leg. I give him, or her, the opportunity to ask any question. I don’t think there is any better way to deal with your own self-image than to create it by engaging people and their ignorance about amputees. If you can walk away from someone leaving them with even a small understanding of what it is to be an amputee, you can change people’s perceptions.”


Tina’s husband, Randy, lost his leg above the knee in 2002 in a boating accident. Randy is 39 and also has two children, ages 9 and 6. Tina recounts having to address the amputation with their children, as well as children in the community:


“When Randy lost his leg, our youngest daughter Regan was 17 months old, so she really didn’t know what was going on and she will never remember her Dad with both of his legs. Our oldest daughter, Riley, was almost 4 ½-years-old. I brought her to the hospital and Randy and I explained to her that Daddy was in an accident and he lost his leg. We asked her if she wanted to see it. Randy had just had his leg amputated three days before, so it was all wrapped up. Riley said no, she didn’t want to see it, and we didn’t push the issue. We told her that Daddy was going to be fine and he would soon get a new leg. When Randy got his prosthetic leg, Riley kept on asking when her daddy was going to get his leg back. She thought that he was going to get his real leg back. We explained that God wanted Daddy to have this kind of leg and she has been fine with it. She is now 9-years-old. The girls do hop around the house like Randy does (they do not do it as much now that they have gotten used to it), and this doesn’t bother him. You have to understand that kids work through things in their own way. We’re very lucky that our children have adjusted very well to the situation. They love their Dad no matter what! Riley is Daddy’s girl and proud of it.”


“When the girls have friends that see Randy for the first time, or when we’re at school, children look and say things. But Randy would rather have them look and ask questions than act the way some adults do when they see you in a public place. Kids ask ‘Is that your real leg’, or ‘Is that a bionic leg’ and Randy will answer ‘yes’ to both. Children ask what happened, Randy says he was in an accident and leaves it at that. Kids are just curious and have never seen anything like it, so it’s OK for them to ask. That’s how they learn. When a child asks you questions, just keep it simple. They don’t want to know the whole story. They wouldn’t understand it anyway.”


Here are some easy-to-understand tricks of the trade, when it comes to dealing with these issues:


Questions from your young child regarding a new or existing amputation


Provide age appropriate answers. “Mommy had an accident, but I’m still your Mommy and I love you” if fine for a toddler. Too many details can be disturbing for some children, especially younger children. Consider your child’s unique sensibilities when answering questions.

Try not to be alarmed by the type of questions your child asks. If your child asks if your arm or leg will grow back, explain simply that it won’t.

Children may want to know why the amputation happened. This question is more complicated than it may sound initially. Children may think the same fate awaits them, or may wonder if they played a part in this accident. Assure the child this is not the case.

Depending on the age of your child, he or she may or may not even notice that you have an amputation or wear a prosthesis.

Some parents prefer to prepare a child in advance. Presenting positive images of amputees may ease the shock of the situation.

Don’t try to hide your well-healed residual limb from your child. If you act comfortable, your child will act more comfortable. This isn’t always easy for a new amputee, but it’s worth the effort. Once your limb is well-healed (any open wound can be frightening for a child to see!), let your child catch you relaxing in bed or on the sofa with your residual limb exposed. I let my daughter touch my residual limb as freely as she would touch my other leg. Don’t force the issue, just focus on being as relaxed as possible.

If your child seems curious about your prosthesis, explain how you take it on or off. I let my daughter hand me my silicone lotion and tell her it’s ‘leggy time’ when I have to put on my prosthesis. It makes her feel like a ‘big girl’ and makes the prosthesis less foreign.

Try to keep the discussion neutral or somewhat upbeat when you’re around your young child. Young children often get confused when a parent is depressed and may think they are playing a part in your depression. If you can’t hide your frustration and sadness around your child, make a point to explain that they are not the cause of your feelings. If you are experiencing pain, your child can know that everyone experiences pain when they are hurt. But the pain will get better.

Some tasks you performed prior to amputation may have to be modified temporarily or permanently. Focus on what you CAN do with your child.

Playing soccer might be off the list for the moment, but enjoy another activity you both can do comfortably.

Your child may enjoy helping you with certain tasks. This will benefit you both, giving you a well deserved break and also making your child feel like a ‘big kid’.
Questions from another child regarding your new or existing amputation

Don’t be a martyr. If you don’t feel like explaining at that moment, keep it short and sweet and move on.

Remember, small children are innocent. They ask questions from the heart… don’t hold it against them.

The biggest problem is the parents who yell at their children or pull them away, making a scene. If you’re feeling particularly gutsy, smile at the parent and assure them it’s fine if the child wants to ask about your arm or leg. Making parents more comfortable makes the child more comfortable. If the parent acts scared or tense, the child will mimic that behavior. If you’re in the mood to make the world a better place next time you’re at the grocery store, try this tactic. It will be a good lesson for the parent and the child.

As different as the circumstances were for the amputees in this article, there is one thing that ties us together… we make the best of our situations. The bottom line is, think positive and believe you can do this. As I prepare for the birth of my second child, I feel more educated, more confident, and incredibly excited. I even took the leap and hired a Doula, a personal labor assistant, to assist me in medication-free pain coping techniques. I’d much rather continue to overestimate myself and assume ‘I can do it’… because, 95% of the time, I’m right.


Article submitted by Jennifer Latham Robinson, Amputee Advocate

 



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