Now I know that fetal medicine doctors who have very little idea of dwarfism and where there are no protocols in the hospital to involve a specialist, do frequently say this to patients... It is so wrong on so many levels.
I don't think there is anything more frightening than this sentence being thrown at you, " could be mild to lethal and everything in between, get ready you will have to give birth in a few weeks, good bye..."
This sentence was the one that started me on my research jag, I have faith in science and knew that the answer had to be available you just had to search for it long and hard and I was right...
Just by reviewing this file, we knew that Fi would most likely have achondroplasia or hypochondroplasia. And the amazing Dr Jeanty just looked at the scans and said that it wasn't achon, but it would be most likely, nothing at all or hypo or something very rare, but he didn't think that.... When I spoke/e-mailed with him, I felt like talking to God, he is the man who authored many of the limb measurements that are programmed into the ultrasound machines... When I asked him how he knew that she would have hypo, his answer was classic: "Just a feeling, I suppose the last bit of art in medicine..." Long live Dr. Jeanty!!!!
I am so glad that Evan's hypo wasn't discovered while I was pregnant! I can only imagine how frightening that would be. I can't believe how lucky were to not even know until he was 2 because we already knew that he was going to fine. There were still sad times but his personality took all the fear away.
ReplyDeleteI don't know... I guess I worry an awful lot now, but I have heard of people where it took months if not years of getting a diagnosis at the age of 2 or so, and they were told potential tumors and things like that... I suppose either way is hard...
ReplyDeleteWell they told me at 16 weeks my baby is suppose to achon but the woman who told said I should expect him to die that if he's not stillborn then hell die shortly after told me I should consider abortion. Then I get to reseaching and I feel like stomping my butt back down there and punching that b in her mouth getting all upset like that I could have miscarried and its the non lethal kind that woman should be fired just for the way she went about it
ReplyDeleteHey
ReplyDeleteI just wanted to write to say thankyou!! I don’t know if you are still active on here but your blog has really helped me! I’m 33 weeks pregnant and until last week everything was ‘perfect’ however at a routine midwife appointment I measured small so was sent for a growth scan which showed small femurs. We have an appointment at another hospitals fetal medicine unit in 2 days and I’m absoultely petrified!!! I stumbled on you blog through the haze of lots of negative information on dr google so just wanted to say thankyou for sharing!!
Sarah (England, UK)