[jstavrid]

Hi Everyone-

First, congrats to all-I am a new member and my name is Jen- this site came highly recommended as a good source of info with wonderful people!! I look forward to getting to know everyone and chatting..

I have come here to reach out for myself and my husband. We are expecting our first baby Sept. 9th and I am almost 18 weeks pregnant. I had Leep surgery about five years ago, and they wanted to start monitoring my cervix to make sure all is well, so Last Monday, I went in to DR's office to get a routine sonogram- The Sonogram tech was scanning and told my DR she thinks she saw something at the bottom of the baby's spine-at that point it was questionable she couldn't tell (this is what I was told). Then, the DR had me take the quad test-which I had refused testing in my first trimester b/c I didn't really want to deal w/any of the false positives... well, I got the results back on Thurs and things are looking abnormal according to the test. DR said that for my age normal downs is 1 in 600, mine is 1 in 144, and my AFP protein is 19x the normal amount. So, because of seeing something along with these test results, I got the picture that something is wrong..I am truly beside myself and sick to my stomach. I have an appointment this Weds. to get a level II ultrasound done to see what the story is with the baby-they are going to look at the spine etc. DR said they may also offer me an amnio-which I really Don't want. Sorry to unload this on everyone but I just need some advice guidance whatever you can offer. I just don't know what else to do... I am so sick, my husband and I can't stop crying. I asked the DR about the false positives and she said that due to my #'s and the fact that the tech saw something, they're pretty sure something is going on with this little one.

Do you know anything about any of this? I have read so much online and I am just so upset... ... I haven't told my family at all b/c I am scared..

Congrats again to everyone and sorry my first post is this... but I would appreciate anything you have to give.. I haven't stopped pleading that all is ok!!

Thanks again!!

Jen

 

[Norasmomma]

I am sorry to hear this. I just wanted to say that I know it can be very overwhelming to hear such news.

I want to say my best friend has a son with Downs, she didn't know anything prior to his birth, and he ended up spending about 10 days in the NICU. Aside from his rough start he is an amazing child. He turns 2 today and though he is behind in some aspects he is an incredibly bright child. He knows over 30 signs, does talk some, started walking and is generally very much like a "typical" child. They were very distraught also when they found out, and "mourning" the child they didn't have, but their dr told them something that changed their minds. He said "children with DS are some of the most amazing, kindest, most beautiful children you will ever know." It still was very much hard for them, but it did help them see that it wasn't the end, but a beginning of a new journey. I am not sure if that's what you want to hear, but honestly my experience with his family has changed much of my perspective on a situation like this.

I would also go over to the Special Needs part of this site and see if any of the moms over there who may have been through anything similar.

I hope this helps a little.

 

[OTMomma]

Jen- first- welcome to MDC- I hope you do find this to be a wonderful resource for you as you come into parenting!

I don't have any similar experience to share- However, I wanted to offer you a

.

In your situation- I would try to not panic too much before the level 2 u/s- and even after it. If the issue looks to be on the spinal colum it is possible your baby has spina bifida- (I don't know enough about test numbers to know if that relates correctly). I've worked professionally with a couple of kids with spina bifida- the degree of how much it affects a child's life is strongly affected by where the lesion on the spine is- the lower the lesion, the less it affects the child. Even if it is high, it doesn't affect the child's intelligence- meaning that your child could live a normal life- whether or not he or she can walk. Some kids with low lesions (at the bottom of the spine) can learn to walk, with physical therapy. The kids I've worked with were wonderful, sweet, beautiful souls.

If you are opposed to having an amino- and wouldn't terminate anyway, I wouldn't do it. If you feel it will answer questions you feel a need to know the answers to right away, after your u/s, then its OK to choose that. Personally, I would probably take the results of the second ultrasound as all I needed to know- it will tell you how your baby's body and organs are developing, for me, a certain diagnosis can wait until after baby is born.

I hope some with more knowledge than I are able to respond. You can also post in the Special Needs parenting board here for more advice.

Peace,

 

[DevaMajka]

I'm sending vibes for you that everything is fine with your babe. Hopefully someone has some knowledge about this that they can share with you.

 

[Guinevere]

I just wanted to welcome you to MDC; congratulations on your new baby! I'm due in Sept., too.

I am truly sorry that the u/s and prenatal screenings are causing you so much worry and stress. I understand completely why you opted out of the first trimester screening for those reasons, as I have always done the same thing. I gave more serious thought to the testing this time around, only b/c our last child was born unexpectedly with Down Syndrome and I wondered if perhaps I would want more of a "heads-up" this time around.

Ultimately, I came to the conclusion that questionable results w/o any true diagnosis (and I'm just not willing to go as far as amnio, it's beyond my personal comfort level) would only serve to make my pg more stressful, and not necessarily for any good reason, as it is only a measurement of risk.

If your Dr. is concerned with the spine, then the most common issues you *might* be dealing with are likely neural tube defects (spina bifida is one of the most common.) While I fully realize how intimidating it is to consider having a baby with special needs, I just want you to know that even if that occurs, it can and will be okay.

Really. Sophie, my baby with genetic enhancements, is turning 3 in a few weeks and I can say without a doubt that she is absolutely the best gift I never knew I wanted.

Should your follow-up u/s come back with more concern, I would highly encourage you to seek out further support by posting on our Special Needs forum. We're a good bunch, I promise.

Not only will you receive support there from other moms who understand what you're going through, but you will find it infinitely more supportive and encouraging than a session with Dr. Google, whom I've never found to have much reassuring to tell me.

Pregnancy and birth is so deeply intertwined with our dreams and expectations, and whenever there is the possibility that those dreams don't match up with reality, it can be a very hard initial adjustment. A grieving process for the baby you thought you were having is completely natural. Just understand that, even if it seems impossible right now, you will indeed come to love the reality of your baby just as much as the dream.

You'll be in my thoughts.

Guin

 

[Cali2SC]

Hi Jen.

Congrats on being a first time mom! (me too, due in Aug.)

I don't have any new advice, just wanted to give you a big

. I'm so sorry that your having to go through this. My family has an increased risk for Downs, too. I also refused early testing because I know this baby will be loved and I didn't want the extra stress while preggers. Thus far I'm low risk, so I've also been able to avoid getting an u/s, so we won't know until birth. As pp'd definitely check out the special needs section. Try to stay positive, as much as possible. I'll be thinking about you.

 

[Lisa1970]

If the ONLY thing they saw was on the spine, then I do not think the chances are high for downs. There are usually other things then...usually, but not always. However, that being said, there is a lot more than just downs to worry about.

((((hugs)))) Hopefully, you will get answers soon.

 

[MamaJenese]

Just wanted to send you a

until I can give you a real one! Glad you posted. The women here are wonderful!