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Bilateral Debate on treatment, looking for any opinions

My daughter Faith was diagnosed with Bilateral PFFD when she was born in Dec 2004. She is 6 months old has had two appointments, one with Shriners in Chicago and one in Baltimore with Dr Paley. The doctor in Chicago recommended not to do anything. Dr Paley recommended to first surgically 'relax' the muscles, ligaments and tendons in her hips and knees. Then lengthen the shorter of her two legs to make them equal.

My wife and I are very divided on the treatment options. I am trying to keep a very open mind and I am looking for any assistence anyone can provide that would help us. The arguments are as follows:

My wife wants to do a third option, to do the operation to relax and lengthen the longer leg, then amputate the foot and fit her for a prosthetic for the shorter leg. Her thinking is this will allow her to operate normally, climb stairs, wear normal clothes, etc. She believes the kids won't make fun of her because prosthetics are more curious and she won't be considered a midget. She believes that she will get beaten down by society otherwise. She says I am selfish for forcing my daughter to be short.

Needless to say, I don't agree with this option. I am leaning toward Dr. Paley's option. I believe that we do all we can for her and let her be herself. That being short is who she is. She will learn to navigate like anyone else and she will be just as strong and determined regardless of her condition. I believe that amputation is harsh if there is no need and I can't understand why it would be done to be a "normal height". Because we don't know what the future holds, that amputation is limiting her options in the future. I believe it is shelfish to make my daughter wear a prosthetic.

I am not looking to prove who is right or wrong, I am looking for other's opinions. I am keeping an open mind and would love to hear from others who have had to make similar decisions. I would also love to hear from others who have PFFD and could do it all over again or just what to expect. I am just trying to do the right thing for my daughter!

Thank you for any help!

Hi, Nate. I am a twenty eight year old with bilateral PFFD. I would love to talk with you and your wife about my experiences.

I had a leg lengthening at the age of 11 (1987) to lengthen my left leg. At that time, my parents and I were presented with pretty much the same options: lengthening of the left leg, shortening of the right (no way was I going for that) or amputation. I clearly remember sitting in the doctor's office and being absolutely shocked at the suggestion of amputation. That seemed extreme to both me and my parents.

If there is any way you can postpone treatment until your daughter is of an age where she can be involved in the decision making, I would recommed that.

Please feel free to contact me with any questions/concerns you or your wife may have. You can email me at

Hi there

I am the Mom of Chris who is now nearly eighteen, and was very much in the same prediciment....what descision do you make. Well, I decided to lengthen, fix all the bit and pieces, hip etc. My reasoning was ....why amputate, try and fix it first, and then later if it did not work then you amputate. Then you are not left with....maybe what if we had maybe tried to lenghten, kids are very resilient and cope well, it's the parents that don't cope well. Chris is now nearly eighteen and we have almost reached the goals..not with much pain suffering and cost, but it has been all worthwhile.


Hi Nate our daughter is 7 months old born in October 2004 so i know what you are going through. at this piotn with us we have decided to do nothing and just let our girl grow I would be more than willing to tak with you about this more if you like. my personal email is

Wow...I too remember what a tough choice it can be. You are presented with the options that the profesionals feel are best, but you just want your daughter to be ok. Our case has several stories in it, but the short and sweet thing is to try to do what you can to delay any type of amputation for now. My daughter has gained about 5.5" of length so far over her two surgeries, and she ride horse, runs, climbs, plays and has lots of friends. The medical world is advancing so fast I think you may want to make sure that when the perfect thing for your daughter is available that you haven't rushed out and amputated her foot so there is nothing they can do. If you want to chat feel free to email us at, or call collect at 763-494-8823 and we will try to help. Either way you have some time to decide as most doctors won't do much until after your daughter is at least 1 year old....Hope this helps!!


Chuck, Karla, Dylan & McKenna

Hi! I wanted to recommend an article to you. It's a study done on decision-making in families who are trying to make a decision about elective surgery for children with short stature. You may be able to relate to the parents in the study. The title is "Trying to do my best as a mother..." which is also telling of the struggle we go through when trying to make a decision for our children. It can be found at this address

Our son has unilateral PFFD and was an excellent candidate for lengthening so that's what we chose. I have to say that it's not an easy process. It's easy to question yourself when you put your child's livelihood in a doctor's hands especially on those days when he cries incessantly because of pain. I fully understand why many people say amputation is a viable option. There are too many factors to say that what's best for one child is best for another even if they have exactly the same medical indications. The choices we make affect more than just the child--the entire family is affected by it. We are very happy with the results of our son's lengthenings so far. He got 5.5 cm the first time and has 7.5 this time. It's miraculous to see his bare foot touching the floor now. But, I would never recommend it unequivocally to anyone. It's a very individual decision. It's not a cop out to wait or to make another choice. Or to try a few more doctors to see if there are other opinions. I appreciate doctors who are content to limit invasive treatments. (If it's not broke, don't fix it.)

We spent time praying for discernment before making a decision. I have often found that whatever you choose, your continued contentment with and support of that decision will ensure that your child will thrive.

Christine Ross

The link to the article Christine refers to above ( British Journal of Health Psychology: "Trying to Do My Best As a Mother: Decision-Making in Families of Children Undergoing Elective Surgical Treatment for Short Stature" ) asks for $15 to view it. I found the full text of the article in google cache here and here

Since the article is cached - it may not stay available, but in summary: The article discusses interviewing 9 women whose children have achondroplasia: or in the article's own words...

Treatments for conditions of short stature such as achondroplasia are also elective in nature. Although there are no medical consequences associated with height per se, short stature can have a number of social and psychological consequences. Achondroplasia is a genetic condition which primarily involves the skeleton and so restricts growth. It is associated with short limbs in relation to the trunk and is the most common of the disproportionate short- statured conditions.
Surgical treatment for short stature-limb lengthening-is a very invasive intervention (Saleh, 1997). It involves the application of an external frame held in place by metal pins, which are fixed to the bone on either side of an induced break. The frame is extended by turning screws to pull the break apart until the desired length has been achieved. This must be accompanied by intensive physiotherapy routines to ensure that the soft tissue and muscle develop alongside the lengthening of the limb. The treatment can easily last 12 months and children need the use of a wheelchair for at least some of this time.

The article ends with the thought that psychologists might help parents and their children as the decisions are complex and feelings about the surgery change over time....

However, previous research on elective surgery with children, and such theoretical perspectives, do not capture the complexity of the decision-making process in these families. The models of decision making which predict outcomes from various factors are not elaborate enough to explain the thoughts, behaviours and feelings important for the mothers in this study. Many people were involved in the process: several family members and the medical team, as well as the mother/child dyad. Both mothers and children could feel much ambivalence about the operation, changing their views many times, even after surgery had begun. The process here was similar to that outlined by Smith et al. (2002) in their study on decision making by people at risk for Huntington's disease in many ways, even though the content of the decision was quite different.

Perhaps most importantly, the dilemma that faced the mothers was not whether their child should have the intervention or who should make the choice. Mothers tended to agree that this decision belonged to their child, not to them. Rather, the dilemma concerned the mothers' perceptions of their role in ensuring the quality of their child's decision. The issue for them was not 'should my child have the surgery?', but 'am I doing enough as a parent to help my child make a wise choice?' The mothers in this study were keen that their children should gain a sophisticated understanding of what would be involved in treatment so that they could actively consent to it. Children were helped to do this by mothers offering pieces of information over time in order that their child's knowledge gradually accumulated, and by correcting misunderstandings. Information was sometimes filtered through their adult eyes and mothers used a variety of tests to assess competence.

Thus, the mothers' issues centred around the ability of their children to give informed consent, such that theories of parenting and ethics appear just as relevant here as theories of decision making. Much has been written in the literature about gaining children's informed consent (Kent, 1996). According to developmental models (e.g. Piaget, 1929), children's beliefs about illness and treatment are qualitatively different from adults', bringing into question their ability to consent to medical treatment (Eiser, 1989). It has been argued that young people have difficulty with this up to age 13 (Grisso & Vierling, 1978), yet the mothers in this study needed to be sure that their children could give their informed consent to the surgery before this age. The mothers' difficult task was to help their children process a range of information in readiness to make the decision, thereby advancing the children's natural level of reasoning.

Recent literature suggests that there are three broad sorts of capacities necessary for decision making competence: capacities for understanding and communication of information, capacities for reasoning and deliberation, and the capacity to have and apply a set of values or a conception of the good (Buchanan & Brock, 1989). Especially in relation to elective treatment, children have to be able to anticipate their future. Competence determinations involve matching the capacities of a particular child at a particular time and under particular conditions with the demands of a particular task. Alderson and Montgomery (1996) suggest that adults need to consider, at each stage of treatment, whether or not the child is competent to take a particular decision. This less rigid approach to consent seems to fit with the diversity of individual children and to better explain the processes described here. Research on parenting ill children is also relevant. Alderson (1993) discussed the protective behaviour of mothers towards their children awaiting non-elective surgery. As in the filtering of information reported in this study, Alderson found that parents would withhold information from their children, but for these parents it was to alleviate distress rather than aid decision making.

Seen in this way, psychologists might assist parents, and hence their children, in quite specific ways when elective decisions need to be made in paediatric settings. Because parental anxieties about their children's vulnerabilities and concerns about the validity of their reasoning seem so important, a systems approach to psychological intervention would appear appropriate (Burnham, 1986). Parents, too, could benefit from consideration of their own reasoning about surgery. Psychologists could also assist families in this context by bringing their research skills to bear on a number of issues. Clearly, there is a need to assess the effects of elective surgery on children's well-being. Mothers in this study placed great emphasis on imagined futures, and relied on the views of a relatively small number of other families as sources of information; structured assessments of longer-term outcomes for children who have undergone surgery are needed to help families in their decision making. The assessment of competence and understanding is difficult in children, and few generalizations can be made, but there have been some attempts to establish the competencies of children in this respect (Leikin, 1982). Empirically- based guidelines could assist all parties in helping children to make informed choices.

Go see Paley...With all due respect to your wife I believe you owe it to your daughter tom do what is best for her. Amputation is permanent, quick and I disagree with it. Every doctor before Hailey told us to amputate and Paley said no. He said he could lengthen and he has and my daughter has had a hard but wonderful life so far. As a parent I personally would have found it difficult to tell my daughter we didnt didnt exhaust every option and just amputated. Im sorry if my comments sound tough but Ive lived what youre going through and please go see Dror Paley.

our son john gets along great with his bpffd. he had 2 surgeries to correct a clubfoot , he is 14 yrs old attends school with everyone else and is known by everyone in the school dist from 1st graders to high school sr. his biggest problem with pffd is he goes thru 2-3 pairs of shoes a year.
see how she copes with her abilities ( not disability) .
i think a disability is for someone who lost the use of something they have had.