Originally this section was "your first meeting with a prostheticist," but we've discovered that for PFFD, meeting with an orthotist may be a better first meeting.
In our case the knee and below was unaffected and the local orthotist had been working with other PFFD kids for years and had a great design so it was a great fit for us.
At some point in the child's first few months you will probably meet with an orthopaedic surgeon who will explain the various options to you ( see PFFD Treatments ). We met with several surgeons/specialists to get a variety of opinions and 100% of them have said that it is best to wait with PFFD until the child is old enough mentally to handle the concept of the surgery.
Many of the vaccinations you get as a child are IM or Intra-Muscular. That means the injection is supposed to go into the muscle. With PFFD the markers that nurses use to find the muscle in the leg are not the same. With our child (unilateral PFFD) we opted to have all the IM shots in the unaffected leg. So intead of two shots in one leg and two in the other, we'd have three in one leg and one in the other. She cried a bit more during the shots, but suffered no ill effects afterwards.
You've just given birth - now what. You may get a lot of advice from the medical community about medical decisions to make - but what about the other non-medical things. Diapers, cuddling, crawling, car seats, slings, .... What are some of the things that we as parents need to watch out for in caring for a child with PFFD. This chapter is about the first year from the perspective of parents with PFFD.
Again this is a work in progress - if you have suggestions or corrections - feel free to submit them into the moderation queue
Do all PFFD cases look the same? No. [Mc Cormack, 2001] There is a spectrum of severity in PFFD. There are some typical features of a child born with PFFD. The thigh is abnormally short, when the leg is relaxed it is held in flexion (bent), abduction (moved to the side), and external rotation.[Westin, 1969] Some have described the leg as an upside down L-shape or resembling a ship's funnel. The foot of the affected leg is frequently at the level of the opposite knee.
