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How much did you know about your child's special needs while you were pregnant?

post #1 of 18
Thread Starter 

I went in for an ultrasound last week to get an accurate due date.  I'm currently 9 weeks pregnant.  The fetal heartbeat was 175.  My MD called me a few days later to tell me there was sigificant malformation of the skull and brain, and that we would be referred to a "High Risk Specialist" for genetic counseling, more tests, etc.


I understand posting here might be a little premature considering we don't even know if this baby will make it into this world, but I feel so in the dark about all of this and I'm hoping that some of the parents here with more experience can point me towards some resources. 


Did any of you show abnormal results on an early (or any) U/S?  If so, was the prognosis right on, better or worse than reality?  We have one DS who's 3y4m, so I'm interested to hear how your pregnancy and/or birth of a child with special needs affected your children. 


Oh, and just in case this this is relevant, I'm 31. 

post #2 of 18

I am so sorry for what you are going through. For me, one of the most difficult parts of the journey of being the mother of a sn child has making peace with the unknown.


To answer your questions, we didn't know anything during pregnancy or birth. It wasn't until my DD started reaching milestones late that we realized there was something different about her.


wishing you peace. 

post #3 of 18
Hugs. I'm sorry you are going through this. Our story is a little convoluted, but here it is:

I also had an ultrasound at 9 weeks pregnant, for size and dating. We learned that the baby had a cystic hygroma (CH) - a collection of fluid behind the neck. We were told that this could be a sign of a chromosome disorder and there was a strong chance the baby would not live past the 2nd trimester. We were referred to a high risk specialist for additional tests and counseling.

It took a little bit of time and work to find a high risk specialist I was comfortable with. Because of our religious beliefs, there were certain options we would not consider and I needed a doctor who would respect that. Once we found the right specialist, he set up a series of level 2 ultrasounds to monitor the CH. My husband and I choose not to have invasive prenatal testing done. (I'm not against the testing itself, but skipping it was the right choice for us.)

By the start of the 2nd trimester, the CH had started to shrink. By the 20th week ultrasound, the CH had resolved and there were no signs of fetal abnormality.

My son was born at 41.5 weeks, 8lbs, and healthy. We were overjoyed. He had (and still has) a very small growth on the back of his neck, but it's barely noticeable.

DS had signs of having neurological differences from early on, but he was our first (only) and we did not recognize these issues. He was unable to nurse and had a lot of feeding problems throughout infancy and toddlerhood. He missed his speech milestones, social milestones, and motor milestones. At age 2 he could read, but could not talk. A week after he turned 3 he was diagnosed with high functioning autism with hyperlexia and dyspraxia.

No one can tell us if DS's autism is related to the CH he had in utero. Last year we had some chromosome testing done and discovered that DS has a microdeletipn on the 19th chromosome. This is a very rare finding, so rare that the doctors do not know the clinical significance of it.

Additionally, we learned that DS has a form of albinism, which results in a mild visual impairment. Albinism is a genetic recessive trait, so DH and I have to both carry the gene, although neither of us knows of any family history of the disorder. It is believed that the albinism is unrelated to DS's other challenges.

So DS truly has a unique medical history and we never know what to expect with him. He is now 7 and has made great progress. We are very lucky to live in a school district with excellent services and wonderful teachers and therapists. He is a happy, smart, funny little boy and is the light of our lives.

I wish all the best to you and your family.
post #4 of 18

VT - no advice, just sending you prayers.

post #5 of 18

We had a 20 week U/S with my DD who is on the Autism spectrum (high functioning). She apparently had unusual nuchal folds and that increased our chances of having a defect by 50%. That sounded scary but it meant we went from 1/1000 to 1/500 or so. As it was, we thought she was typical until 3 yrs old when she began to fall behind her peers. The dev ped has reassured me that the U/S findings don't point to her Autism.


Good luck with this, and I hope that things turn out well for your family.

post #6 of 18

We didn't know anything.  I even had an amnio and level II ultrasound.  Nothing out of the ordinary was noticed.

post #7 of 18

We never knew anything was wrong even with an ultrasound. I refused all other tests however due to my personal beliefs.

post #8 of 18

We had some growth issues during the pregnancy where DD was measuring smaller than dates. These did not appear until around 28 weeks. I had Gestational Diabetes so I had extra follow up anyway. We did the quad screen and it came back normal. I had a level II ultrasounds at 34 weeks which came back normal. DD was born at 37 weeks and suffered a stroke in delivery, we discovered while she was in the NICU that she also has a chromosome difference. It was never picked up on any of the tests we did, not the 8 ultrasounds. I really wish it had been. In retrospect I wish I had the amnio- which would have shown it. I just would have like the chance to choose to have her, even with the SN. Instead I spent the first year of her life angry at her diagnosis and wishing I did not have a SN child. It was a process. Best of luck to you in your pregnancy.  

post #9 of 18
Thread Starter 

I just wanted to give a quick update, in case anyone was wondering.  I actually wish I knew how to cross-post because I just posted it all in the Jan 2010 due date club (which I had joined as soon as I found out I was pregnant) and I'm not up for typing it all again.  If you want the longer version, that's where it is.


Baby's missing the back of "her" skull.  There's just a giant hole about 1/3 the size of her head.  Nearly all of her brain tissue is on the outside, including the top and sides of her head and over her face.  She's "incompatible with life", and there's nothing they can do to correct these defects.  In fact, exposure of the brain tissue to the amniotic fluid for so long is causing even more damage. 



post #10 of 18
I'm so sorry. Hugs and prayers for you and your family.
post #11 of 18
Oh mama! Many many many hug.gif coming your way. I'm so sorry.
post #12 of 18

I'm so sorry about the prognosis of your sweet little girl.  Wishing you and your family lots of strength hug.gif

post #13 of 18

Oh mama, I am so sorry.  greensad.gif

post #14 of 18

I'm so sorry.


post #15 of 18

I am so sorry.  My first child had severe amniotic banding around her head and was missing part of her skull, and also had heart problems that were "incompatible with life".  I didn't find out until my 19 week u/s. 

post #16 of 18

I'm so very sorry.  You are in my prayers.

post #17 of 18

much love and prayers coming your way...i am so sorry

post #18 of 18

I am so very sorry mama :(

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