Special Needs

I think my Doctor told me that my DS has a form of 'dwarfism'.

Hi, everyone.  My name's Audrey, and I'm 37 weeks and 1 day pregnant with my DS Shawn.  This is my second child and we couldn't be more excited about his arrival sometime around Christmas!  This is a little hard for me to explain, because I'm still processing what I was told yesterday. 

At 33 weeks, my OB, of course, checked my fundal height.  I was measuring for 35 weeks.  They brought me in early at my 35 week appointment, and gave me an ultrasound in office to check how big DS was and to check to see how much amniotic fluid I had.  Turns out, it was just the way he was laying that gave me the extra 'height'.  Thank goodness.  However, they said that his 'legs were short'.  The OB told me that his legs were measuring 2 weeks behind, and that they wanted me to get another level 2 ultrasound in two weeks to see if his legs had grown, and that if they had grown and were still only measuring 2 weeks behind, that it wasn't anything to worry about.  That's all my OB told me.

I went for my level 2 US yesterday at exactly 37 weeks.  The US technician measured all of his 'long bones' 3 times each (the upper and lower part of his arms and legs).  Then the Doctor came in and even he measured all of DS's long bones.  I was then told that while DS's head and abdomen/torso were measuring right on schedule, his arms and legs were measuring 6-8 weeks behind, and was asked if my OB had told me what this could mean.  Of course, I said no.

I'd like to point out that not once, did this Doctor say the word "dwarfism".  And I apologize right now if it has offended anyone.  What the doctor did tell me is that, most likely, DS has a form of Achondroplasia or a form
Osteogenesis Imperfecta Mild.  At least, I think he did.  I had gone by myself (DH was watching our 5 yo DD), and all I really heard was "something's wrong with your son."  Now, I know that this is not a 'something's wrong' thing.  I know my son is already loved and going to be loved beyond compare, just like his sister is right now. 

Honestly, I don't know what I'm feeling besides overwhelmed.
The Doctor said that there was no bowing in his bones, nor were there any fractures (thank God).  But....  What does this mean for my DS's future?  Does this mean extra doctors? Surgeries? Special equipment? Will he have special needs?  Not only that, but how can I prepare him for the inevitable discrimination that he's bound to come against? I've got so many things running through my head right now, and I really don't know what to think.  I mean, there's nothing to do about it right now, I still have to wait until he's born, BUT, I can't help my mind from wandering off.  If anyone could offer any advice or whatnot, I'd really appreciate it.

Re: I think my Doctor told me that my DS has a form of 'dwarfism'.

  • amarks83amarks83 member
    edited December 2013
    Thank you so much.  It seems as though there is nothing else 'wrong' with him, except that his arms and legs aren't measuring long enough.

    You're the 4th person to tell me now that I should probably not worry about it.  And I appreciate that.  :)  Thanks again!  And I will be following up with my OB on Monday.
  • Your reaction is totally understandable; that is a lot to process and a lot of unanswered questions. I would definitely ask your OB for more information on probability, etc. It's true you likely won't know for sure until he is born. Thinking of you; please keep us posted.
    fraternal twin boys born january 2009
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  • I'm sorry you got scary news especially by yourself.  I work in nuclear medicine (part of radiology).  Obviously you need to talk to your OB, but it sounds like the u/s tech did a good job of checking and rechecking the measurements.  He/she even had the radiologist (the dr who reads the exams) come in and check the measurements.  At the very least, IMO, it sounds like you got a thorough diagnostic exam and it should provide your OB a lot of information. 
    Wendy Twins 1/27/06. DS and DD
  • Usm123 said:
    I am so sorry you heard such scary news. Try not to panic. Ultrasounds are not an exact science and not a good diagnostic tool. They are looking through you, through the baby to see the baby's bones. I was told my son most likely had trisomy 18 at a level II ultrasound by a MFM. He had short long bones, missing a lobe of his heart, and fluid on the brain. When he was born, he had no genetic abnormalities. His heart was all there and his brain was fine. His torso is long and his legs are a little short but no different than my 3 yr old. Do you have a follow up with the dr? Praying for your family.
    We had a similar experience where we were told that there was an abnormality with my DD's vermis (part of the brain). They did multiple ultrasounds and wanted me to go in for a fetal MRI, which we ended up not having. While she did have other brain issues, the neurologist was unimpressed with her vermis, which is doctor speak for, "it's within the range of normalcy"

    It was not fair of the doctor to use that phrasing and not provide you with resources to educate  yourself. You should call back to the doctor and ask for a follow up and what the plan is. With your baby need to be seen by any specialists after he is born? Can you meet with them early to talk? 
  • amarks83amarks83 member
    edited December 2013
    Thank you all so much!  It really is encouraging to hear this.  lol  I'm still pregnant as of yet, so as soon as he comes and we've gotten a chance to meet him ourselves, I'll let you all know.  The thoughts and prayers are so very much a welcome thing!  Thank you all again!  I think I am going to bring up the fact that they gave me absolutely no information as to what it could mean if his legs are short, effectively allowing me to walk into that lvl 2 u/s blindly.
  • Yeah, I'm sorry they didn't prepare you better and just kind of dumped that on you. 
    Wishing you all the best!
    fraternal twin boys born january 2009
  • Well, had my 37 week appointment today.  They are pretty convinced (short of seeing DS in the flesh) that he's got Achondroplasia.  However, other than his arms and legs being short, he is in good health, his bones are not fractured or bowed, and he should be just fine!  Praise God!  We've decided that we're going to have a scheduled c-section as early as possible which could mean that I could have him in my arms as soon as the 18th!!!!!!  Thank you all for the advice and well wishes.  I can't tell you how much I appreciate it!

    Audrey
  • I feel like I could type to you for hours about how you're feeling and how awful it is. I'll keep it short-I was 36 weeks pregnant when they told us the same thing. Our son was measuring on the less than 1st percentile with his bone-normal chest, no spine curvurtre. However he had bowing femurs. It was devastating. My husband has osteogenesis imperfecta but never had a fracture and other than him being short, we never considered out kids would have it. Anyway, turns out our son has OI (mild case), and he is the absolute love of my life. We just are very careful with him and ensure he doesn't go in a jump house with 14 other kids. I'm glad to hear there is no bowing or fractures. They may be wrong on both counts, be for yur sake and youe baby's sake, I hope they are. Good luck with your delivery and please feel free to PM me if you have any questions. I've been there, done that, right now we are pregnant with baby #2 and no signs of OI, just a peanut baby, but again both my husband and I are 5'3"
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