Our unborn boy has been found to have no right femur at all. His left is in the bottom 3rd percentile of length but goes from hip to knee. The bottom half of both legs and feet measure normally and scan normally. The forearm ulnas are in the bottom 3rd and 10th percentile as well but look to developing properly in relation to what they join on to.
I am deeply concerned that along with the physical disabilities that my son will have he may also have a cognitive problem.
So far no-one on this site ( that I can find) has reported any mental cognitive problems with their PFFD, that's a good sign, but can anyone relate a story where PFFD and slow cognitive development have presented?
Also, I am interested in finding out if anyone who has had a child with D class PFFD has then gone on to have any other children, as everyone's stories here seem to be about their "youngest". Does the daily lifestyle of a class D PFFD curtail the energy, money and desire to have another child?
Thanks
T
Re: 20 weeks NO femur at all.
Our daughter was born with what we thought was a class C but over time seemed more like a class D. She was our eldest and now about 9 years old. She's great both socially and advanced for her age mentally.
I know of no PFFD people that also have learning disabilities or cognitive issues and we went around the country meeting a lot of PFFD people when we were first doing research on the condition (back then there was no pffd.org). I do know of one family that had a PFFD kid as the older and an autistic one as the younger.
Did the daily lifestyle curtail energy? As a baby they just eat, drool, poop and make noises. Just having a baby is curtails energy, A LOT, but the PFFD portion had no impact on that. That's just life as a parent. In fact because babies don't walk, PFFD will have no impact on your life at all for a year at least.
Curtail Money? We have decent insurance so money hasn't been an issue. We opted for prosthetics w/out surgery so the impact on our day-to-day lives is negligible. She gets up, puts on her lift like a shoe, and that's it. When a new prosthosis is needed we have to spend about 2 hours getting casted (about once a year to 9 months now) and 2 hours getting fitted a few weeks later, then adjustments as she grows. Sometimes we had to fight with the insurance company because PFFD doesn't fit into their standard model and they are a profit-driven enterprise (like getting a wheelchair approved, or seeing a specialist). The people we know who opted for a surgical route can probably speak to time/money, but my understanding is that depending on what surgery you go for - that can be a long route. Since the affordable care act was passed (assuming you are in the US?) you no longer have to worry about an upper limit on lifetime spending so you don't have to worry about costs now eating into what you might need to spend insurance-wise on yourself at end-of-life times.
PFFD curtail desire to have another child? No.
Re: 20 weeks NO femur at all.
Well stated!
-Beth