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thanatophoric dwarfism...please help
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thanatophoric dwarfism...please help

thanatophoric dwarfism is a lethal form of dwarfism that leads to the babes death minutes after birth from suffocation.

I just went to see my OB and I have to go tuesday to the high risk fetal dev. clinic in London ON for a detailed US. My GP that I saw monday only told me that the report said "highly suspicious of thanatophoric dwarfism". My OB today read it to me and here is what it says:
~head circ. normal
~BPD normal
~abdominal circ. normal
~spine normal
~nose and lips normal
~no frontal bossing
~femoral length 1.5 cm (4 weeks behind) also states that these are +/- 2 weeks
~humerus 1.5 cm (3 weeks behind) also states that these are +/- 2 weeks
~hypoplastic ribs
~appears to be bell shaped thorax
my OB also said that the clinic I had the US done at has been known to make mistakes in the past (we went there only beacuse it's the only clinic that will tell you the sex and we didn't know about the reputation). She also said that after they do the report they throw away all pics which is so not right. She basically said to relax, that it could be errenous. My husband is 5'10 (but has short legs) so my OB said he might just have short legs and they still could catch up a bit. Do you know how far growth needs to be behind for them to say without a doubt that there's a problem? do you think that maybe his short ribs may not indicate a real problem? Im just trying to figure out the chances that maybe things will be okay...My OB said to still have hope that my babe may still be okay...so scared for my little man and I know I can't do much but wait.

normally, thanatophoric dwarfism is indicated by shortned limbs that are curved, shortned ribs, clover leaf skull, narrow rib cage, hydrocephly, flat spine etc....my babe has a couple of those (apparantly) but not all...what are the chances that maybe the first US is wrong??
3 Comments Post a Comment
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Avatar_f_tn
anyone?
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Avatar_f_tn
i just lost my baby at 23 weeks to that same thing both his leggs were mesuring at 15 week his arms were to he had an inlarged head and a small chest cavity  in the end we did some testing of the amniotic fluids and test was positive with just killed me as much as we wanted him even if he was a dworf we had to go ahead and do the abortion because he would die right after birth its been very hard to deal with but all i can say is get what ever testing done and if it says thats what it is just be prepard  and im so sorry if thats the out come
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Avatar_n_tn
My wife and I had the same problem and we had an abortion at 23 weeks, but our life has never been the same after that. She is having problens dealing with the loss and blames me and sometimes blames herself. I wish we could get some help cause the social worker at the hospital was not very helpful
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