So confused!!!

[lovebird1231]

Ok, so I am currently 20 weeks pregnant. I will be 21 weeks tomorrow, and at 19 weeks 5 days I had an u/s at a specialist (whom I go to due to a stillbirth last year)
Ultrasound looked good except they couldn't see the heart chambers yet, while I was waiting to talk to Doctor about the u/s results I get a call from my regular OB and they tell me its my blood work. They fax it over to the Specialist and the Doctor or Nurse not too sure who this lady was; read me my results saying "my AFP screening came back High for Spina Bifida" OK! ???? She said an amniocentesis is required for further input.

The next day I call my OB to come in and talk to her, she told me to do another u/s (which all specialist u/s are level 2) and see if there is fluid maybe in the brain, lemon shaped or gaps in the spinal cord. But from what she read from the u/s results that my baby boy looks healthy other than low weight of 7 oz.

On Tuesday of this week 8/17 I went back to see my ob to hear heartbeat, and it was 154 strong and LOUD wow...and the midwife read me word for word the ultrasound report...same thing.

Yesterday, I went back to specialist to talk about the amniocentesis and he says " your doctor wants us to perform an amnio because you are showing a risk of 50% of your baby having NTD or Spina Bifida" I was left blank he did not go over the u/s picture from last week (19 weeks) nothing. I told him that my OB suggested to do another u/s to see if anything will show up. He said ok and scheduled for 9/3 (I will be exactly 23 weeks)

My problem is (and please none judge me, as this is me and I how I feel). I already love this baby, and can not imagine him being hurt in any way. But I would more than likely terminate the pregnancy if he is found to have SB. The Specialist told me that GA law is 24 weeks to terminate pregnancy and the thing is if I do an u/s at 23 weeks and if they do "see" something and I do amnio and I wait for that to come back that is 7-10 days and I will be pushing my 24 week limit for the state of GA. I really want this baby and am confused in many many many many ways because I feel like I am getting the run around.

I have read allot of the post on here and you moms and everyone that does have SB are inspiration to everyone and it is amazing how you live a day to day life and are so great-full for everything.

I might end up keeping my son, but I AT LEAST want to be able to think about my options and not be pushed for anything if it is not needed.

Back to my main question though, wouldn't a level 2 u/s at19 weeks be able to pick up SB or traces?

[cadon's mum]

My ultrasound at 20 weeks was very clear, it showed the lemon and banana sign and the myelo on my son's spine. My blood work previously had all came back normal!!! So remember that there can be a lot of false positives regarding bloods. I am also in no position to judge as i have had a termination myself. But please be aware that all Dr's have to give you worst case scenario and it is very rarely the case. There is no reason at all why your son cannot lead a very active and fulfilling life. And to answer your question, I have a couple of friends whose babies with SB were not picked up on ultrasound at all and they found out at birth and another who's wasn't found until 32 weeks.

[babybsmom]

My son's u/s at 20 weeks was completely normal. We did not know until I was 34 weeks and it was a total fluke that we discovered it. I do not believe any of us are in a position to judge, most of us have probably had all of the same thoughts you are having now. We were given the worst case scenario, and so far, my son has not followed any of their rules. I think if you continue to read posts on here, you will see that most SB kids/adults are not what our dr's paint them out to be. Good luck with your decision. I wish you the best.

[lovebird1231]

My son's u/s at 20 weeks was completely normal. We did not know until I was 34 weeks and it was a total fluke that we discovered it. I do not believe any of us are in a position to judge, most of us have probably had all of the same thoughts you are having now. We were given the worst case scenario, and so far, my son has not followed any of their rules. I think if you continue to read posts on here, you will see that most SB kids/adults are not what our dr's paint them out to be. Good luck with your decision. I wish you the best.

When you had you u/s at 20 weeks was it a regular u/s or level II?

[misty]

Hi Lovebird,
I'm Misty, SB L5-S1, hydrocephalus, bowel and bladder incontinent, walk with assistance from leg braces around the community and without assistance in my home. I'm 27 with my own apartment, I'm married, we have a dog, and I'm working on preparing my body for pregnancy (I'm excited about that last one)! In my opinion, SB is not a reason to abort a baby. I'm not telling you not to. That's your decision, and you know what you can handle, but if I could go back to my fetus state and choose for myself, I'd say "Let me live. I'll take the good with the bad. The bad sucks, but the good makes up for it tenfold." Have I hurt sometimes? Yep. But I'm happy, and healthy, and not retarded, and I love my life. I wouldn't ask not to have SB. It just isn't that big a deal. Its my normal.

[sbmama]

Everything looked "perfect" on my 20 week ultrasound, but they accidentally found she had spina bifida at 30 weeks when they were checking her growth. I didn't have the bloodtests done, and I didn't have an amniocentesis either.

[dahliafaolan]

Hi Lovebird.
I'm Dahlia, SB T-12, no hydrocephalus. I'm 25, a college graduate now working at a learning center as an accountant, and dating the love of my life.

Yes it's possible for the ultrasound to have appeared normal. My mom had two ultrasounds when she was pregnant for me and it never showed up. She even had the AFP test done, I believe. Zip. It was completely negative. Nobody had any inkling that I had SB until they did the emergency C-section (for a totally separate issue).

I know you hear all these horror stories of the surgeries and the pain and the possibilities of being retarded, but they are usually worst case scenarios you hear. Has there been pain for me? Yes. Has there been surgeries? Yes, almost as many as years of my life. Would I do it all again? In a heartbeat. I have my low days, but for the most part I just love my life. I have a great job, a great man, a decent car, everything I need.

[bcain]

That's horrible that you'd be so close to the termination date after waiting for the amnio results. I think this is a common occurance. Discuss this with the Drs. They'll be able to tell you how it will all work out with scheduling.

My blood tests were all normal. AFP levels are very inconsistant, esp. if you are over age 35. I did the chorionic villi test at 10-12 wks, chromosomes were even normal,(the villi sample test doesn't test for SB) showed perfect girl. Then at my 20wk sono they saw the SB signs.

My dd level II sono clearly showed the lemon shape head, and the cerellbellum's irregular banana shape. Due to a very active baby, they couldn't visualize the actual lesion until they were setting me up for the amnio. Then they saw the S1-3 opening on her back.(that was not a high tech sono machine either, it was portable). There was a huge sigh of relief from every medical person in the room, once they saw how low her lesion was. The lower, the better is usual thinking. We didn't even need to do the amnio after they could visualize the lesion.
Discuss these "close to dates" with the dr's. I'm sure they could make arrangements ahead of time just in case the results are not what you hoped for. The worst part is the agony of making the decision, and waiting. I have been in your shoes as well, different pregnancy. I have had "medical termination" d/t sono results and abnormal chromosome tests. It was all very heartbreaking. Read lots here. With SB intelligence, is not affected. Your baby can grow up to be independent and happy.

[ammdad]

I guess I don't understand how this is a tough decision. I'm assuming you wanted to have a baby and now you have one that will be born if you allow it to be. My daughter just turned 11 months old and we didn't find out about the spina bifida until she was born. Everyone in the delivery room had the same look of shock on their faces. That was literally the longest day of my life. I was awake for nearly 36 hours straight. My daughter was born and within eight hours she surgery to close her back. A week later, she had her second surgery to have her shunt placed. We have had one shunt malfunction since then (oddly enough it corrected itself with no surgery). The thing is though, no matter how many times I look back to those first few scary weeks, I wouldn't change a single thing about them. I think it just makes my wife and I appreciate all of the small things even more. Our daughter has feeling on the bottoms of her feet, movement all the way through her legs and feet and we are hoping and praying that she will have bowel and bladder control as she gets older. Her PT says that she sees no reason why our daughter shouldn't be able to walk.
I really hope that you make the right choice here and keep the baby. You never know what will happen. Medical folks are wrong all the time. Even after my daughter had been in the hospital for a little while and we had seen movement in her lower extremities, I had folks there telling me that she may not walk. It's all a matter of how you choose to deal with it. Yes we are definately fortunate with all of the progress that our daughter has been able to make and we owe all of that progress to hard work on everyones part as well as a strong faith in God.
I'm going to pray for you and your baby. I really hope this has helped you make a decision.