Post # 1
So firstly, as soon as i found out i was pregnant I told the doctor i was concerned about my weight (I was 195 at the time and 5’5…yikes!) so she asked for an early test to see about gestational diabetes. All my numbers came back high and they think i may have been living undiagnosed with Type 2 Diabetes this whole time. They are treating my pregnancy just as GD though for now.
Anyways, we figure this out and while its hard we deal with it.
What was more difficult was how much my doctor sucked. I was with her for the first three months of my pregnancy. She asked me if i wanted to do a genetic test and told me if i do it I would have a chance of losing the baby so we said no.
Flash forward a few weeks later, i move and get a midwife. She mentions to me that its actually just a blood test and depending on the results we could choose to get the amnio test which has a low risk of causing a miscarriage.
Hubby and I take the test and it comes back “positive” as she puts it. We are rushed into a detailed ultrasound (my FIRST ONE) at 19 weeks 2 days and they see no markers and that the baby looks fine. Im relieved and hubby and are are thrilled (even though if they had DS we would be sad but had already decided we would not terminate the pregnancy). We skip out of the office on cloud 6000 and get a call from our mid wife saying she is still concerned and would like us to take genetic counselling and possibly the amnio test. We have agreed to do the counselling and that we will not do the amnio test.
Right now we are 1/330 chances of having a DS baby. I am 30 and hubby is 29.
Anybody else gone through the down syndrome test? any words?
Post # 3
I am sure you guys are so scared and stressed. I have not been through this, but I hope you can see that a Down’s syndrome child can be a wonderful gift. There is a very talented write who had a baby and was surprised with it. Her blog I amazing, her daughter is beautiful, happy and healthy. The site is kellehampton.com. I would link the birth story but will let you choose to read.
I know it is stressful but know that there is a plan for you!
Post # 4
@Baileyh: I just wanted to tell you that if your baby does have DS, it’s meant to be. I truly believe that children born with DS are given to the ones that can handle it. Hugs to you!!!!!!!!!!!!
Post # 5
@mamadingdong: Thanks! We are okay with the idea that it may be a DS baby (hence no termination) but i think we mourn the possible loss of the “ideal” baby…you know the one you dream of having since you were a child. No one dreams of having a DS baby…..
I just want to KNOW, you know? and the uncertainty is adding way to much stress
Post # 6
@Baileyh: hi, I’m so sorry your having a rough time. I have been told that being overweight has an effect on the downs blood test that makes it less accurate. Given you had no markers on the scan, it’s looking positive!
Please try to keep your head up. Hugs
Post # 7
@Baileyh: Oh wow. I haven’t been through this, but I know I would be reeling. When my parents had my little sister (they were both 41 when she was born), they didn’t have the same technology in the late 80’s and they just told my parents there was a very high likelihood of DS.
My sister was fine when she was born….but now she has pretty severe mental illness (not related to the DS chances). But in the case of all children that are born with things that means they may not ever live independently like severe autism, cerebral palsy, DS, severe mental illness….the best thing you can do for them is work as hard as you can to save money and make a trust for them. So that they’ll be taken care of long after you are gone. And the rest of the time—join support groups, meet parents going through the same thing, work with your local school district, learn the system. My mom does all of that for my sister now (support groups, learning to work the system). It’s very time consuming, but necessary.
Post # 8
The blog linked above really is incredible, the mom didn’t know until delivery that the little girl had DS and their life story is amazing. It is going to be different than you exspected, children with DS can have other issues and it is going to be work. But some of the most incredible sweet children and adults I have ever met have had DS. I would look into seeing if there is a group around you with other parents of children with DS to get some insight into what their life is like and also different things avaliable in your area to help your family with this possible diagnosis. It is still possible your baby will be 100% “normal” but even if they aren’t, you sound like yall are prepard to cope with the difficulties that come with having a special needs child. Don’t try to do it alone! Find people who will be supportive and have been through it. 1 in 700 babies is born with this disorder so there are other families going through the same things as you are, you aren’t alone in it! This is the website for the Canadian Down Syndrome Society where I’m sure you can find lots of resources and info if you end up needing it! I wish you the best of luck and a healthy baby!
Post # 9
I am going through with the testing (ultrasound and combined blood work) but we’ve decided not to proceed with the amnio unless the result is serious enough to suggest the baby wouldn’t survive.
They’ve put you in an awful position first of all, before I even told my doctor I wanted the tests my doctor made SURE to tell me that even a “positive screen” doesn’t mean something is wrong, same as a negative screen could still have issues. It’s more of a tool than a for sure thing. But more often than not, positive screens turn out to be nothing.
If it makes you feel better, I knew more than one person first hand who got screen positive numbers and went on to have 100% perfect babies. One who did an amnio, and one who did not.
Try not to panic too much until you’ve got all the information in front of you (easier said than done, I know) and even then, it’s been out of our mommy hands since the day little bubs was conceived.
Post # 10
@MrsSawyer: Thank you! I was hoping to hear something like this!
I have afew coworkers whose kids had “positive” results as well and their babies were fine. My mid wife thinks my results are skewed bc of my weights and diabetes and i hope she is right!
We are seeing a counsellor soon and hope to get all the info. Our ultrasound came back clear as a bell (no makers) so we are holding on to that obsessively
Post # 11
I’m so sorry you’re going through this. I’m sure it is tough.
My mother was 37 when she had me. She had genetic testing done. I believe the chances of me having down syndrome was 1 in 40. When she heard the news, she immediately called her dad. His only response was, “She’ll be perfect. She’ll be okay.”
My mother had a great delivery, and I was born without a single issue.
It wasn’t until years later that my mom realized her dad didn’t mean that I wouldn’t have Downs. He meant I would be perfect and okay no matter the outcome.
I absolutely believe that is true with any pregnancy such as this. I do wish you the best!
Post # 12
I don’t think 1 in 330 is that bad of a number. Your LO will probably be just fine! But I understand how stressful it can be. I had my NT scan last week and I’m awaiting the results currently.
Post # 13
I work wi children with special needs including those with Down’s syndrome. Sometimes the fear parents encounter is because they are worried they won’t cope. They picture worst case scenario and something I find that works to help calm any fears is to think about that worst case scenario and talk yourself, walk yourself and research yourself through how you will deal with it Should it happen. I speak to a lot of parents who have the same fears; they worry the child will need support they cant provide, they worry the child wint be able to do all the things they had dreamed, they worry the child will face stigma. These are all valid concerns but all of them you can deal with. some of the children ive worked with who have DS have been the kindest, most good humoured, happiest children I have ever met! Walk yourself through dealing wuth the stuff that scares you most. Then if it comes, you know where you are at. If you have any questions, just PM me.
Post # 14
Thanks ladies. And you are right the number isnt actually that bad, but its not what we expected you know? Just scary. you always want the best for your little one! 🙂 My husband tells me all the time that everything will be fne, and i know, one way or the other, it will be. Its just nice to hear it more often then not. Thanks!
Post # 15
I’m sure you both are nervous. Even when you are being told that everything is healthy you still have that what if in the back of your head. Just wanted to really let you know that I’m thinking positive thoughts for you and your family!
Post # 16
Sorry you’re going through this! I agree, read the link above if you’re feeling up to it – an amazing story. Just wanted to add to the list – I also know 2 women who were told they had an increased risk, then went on to have perfectly normal babies. 🙂