Downs diagnosis

[Princesspeachy0]

Not sure if this is the right place to post or not but goes...

I'm 35 weeks pregnant and due to have my baby in Feb, I had the test for DS with my 12 week scan and it came back high risk 1:47. The next day my DH and I went to see someone at the hospital who explained our options.
We decided we wouldn't have any further testing because we wanted this baby regardless.

Now it's getting close to due date I'm starting to get anxious, I really just want to know so we can move on from it all, if that makes sense?!

My question is once I've had the baby, will I know straight away baby has DS? Will the doctors know straight away? Do they do tests on the baby?

We haven't been told what happens next.

Any help will be appreciated

[curliegirlie]

Hi,

Firstly, a huge congratulations on your imminent arrival! My daughter was diagnosed postnatally. When she was born she had a number of the physical characteristics for Down’s, so the medical staff were fairly sure, although they carried out a genetic test (blood test) to confirm, which came back in a few days.
My little girl is now 3 and doing brilliantly!

[curliegirlie]

Here’s a newborn picture of her!

[Princesspeachy0]

@curliegirlie thank you and thank you for your reply.
Your DD is beautifu, lovely pictures! Looking at your daughters newborn picture I wouldn't have thought u personally knew she had DS?
Good news the blood results came back quickly.

[Gilbert82]

Hi, we also had a postnatal diagnosis and same as the previous poster our little one was displaying physical characteristics during the newborn checks, the midwives and consultant were pretty sure. A blood test the following day confirmed . LO is now almost a year and a half and has no other medical conditions x

[curliegirlie]

I had absolutely no idea, but DH maintains he suspected something. She was born at 5am, we were wheeled into a side room under the pretence that the main postnatal wards were full (! In retrospect this should have been a clue that something wasn’t right) and the consultant paediatrician came in to tell us their suspicions at around 9.30. The news wasn’t delivered particularly well (basically lists of potential medical problems- none of which she has) and it hit us like a tonne of bricks....that’s why the DSA’s “tell it right, start it right” campaign and training programme is so important.

In retrospect, I remember us glancing through our photos of her before the consultant came in and saying “she looks a bit Chinese in that one!” 😂. It still didn’t click until we were told though!

[Princesspeachy0]

So I'm thinking because we already know there is a high chance of DS they will tell us if they notice anything.

So far all the scans are good so fingers crossed if LO has DS there aren't any medical problems.

Thank you both for your replies, it helps a lot.

Can I ask if either of you breastfed? Did you have any problems?

[Gilbert82]

We had a really positive experience, the news was delivered to us very well.
We combination fed as breastfeeding was a bit difficult, took to weaning on solid food like a pro though!

[Princesspeachy0]

That's good to hear
I'm very hopeful I will be able to BF LO

I do just want to know either way now

[curliegirlie]

Similarly to @Gilbert82 we combi fed, as the mixture of Cara’s low muscle tone, sleepiness, tongue tie and my inverted nipples made breastfeeding tricky at first, although she latched on straight away when we discovered Medela nipple shields on day 5. She was combi fed for her first 8 months until we were able to ditch the formula. She also took to purée like a pro when we started weaning!

[Princesspeachy0]

This is brilliant news!! I really really want to BF, if I can only do combi feeding then that's so much better than nothing at all

[curliegirlie]

And she actually only stopped breastfeeding at 2 and a half, when I was pregnant with her baby sister and wanted to stop feeding her to sleep, as didn’t fancy tandem feeding!

[MrSlant]

I was in a similar position to you although my risk was 1:100 but I didn't want further testing. It was on my mind once he was born but no one mentioned it and when I asked the next day they told me that they were happy he wasn't affected.

They had also told me I was expecting a girl and sometimes I feel like I'm missing someone in my life that I expected, my daughter who also happened to have DS, not a bonkers ADHD/ASD boy!

[Hiphopopotamous]

@curliegirlie how beautiful is your daughter!

This is a lovely refreshing thread compared to the ones that talk about DS as if it were the worst thing ever. I've always thought I would have further antenatal testing if the chance came back high, not so that I would do anything but so I would be prepared. Should get my combined results in the next 2 weeks for DC2.

[Gilbert82]

We didn’t have the combined test at 12 weeks as we knew we wouldn’t go on to have an invasive test if we’d come back “high risk”, I didn’t want to ruin my pregnancy worrying about a risk ratio. We were told if any soft markers were present at the 20 week scan the sonographer would have to tell us, nothing showed up so the diagnosis was completely unexpected but for some reason we weren’t shocked and didn’t need time to come to terms with it if that makes any sense! Our baby was and is completely perfect to us

[MoorMummy]

Curlie your daughter is absolutely beautiful, she must be the light of your life!

Princess sending good vibes for a good delivery and healthy baby.

[Princesspeachy0]

@curliegirlie wow u BF DD for ages, well done u!

@MrSlant fancy them getting the gender wrong! I imagine that was really weird to get use 2!

@Hiphopopotamous good luck for your results :)

@Gilbert82 I wish I'd never had the test! I knew I wouldn't have further testing but I had the test with my other DC and all was low risk so of course it would be the same If I ever have another pregnancy, I wouldn't have the test.

@MoorMummy thank u so much.

[Princesspeachy0]

@WipsGlitter thank u for sharing that. Your little boy is so handsome.

I have to say when I started to read I did have a few tears, is this what we're going have to do, tell everyone our baby has DS? When all is said and done I know my LO will be loved whatever it's just the waiting is killing me now.

It's excellent news your son doesn't have any medical problems and goes to a mainstream nursery.

Thanks again for sharing everyone. All this is really helping

[MoorMummy]

Wips - what a lovely post and your son is absolutely gorgeous 😍

[Primulas]

Hi OP,
I just wondered if you'd thought about having an amnio at this stage. We did at 35 weeks because baby had a medical issue and they thought that DS could be the underlying cause. We hadn't had the test earlier because we knew we worried that an amnio would cause miscarriage, but at this stage the risk is 'only' of an early labour. Quite a few people said why don't you just wait, but I felt quite strongly that I wanted to know in advance so that I could prepare myself and family members if necessary. In our case, the results came back negative and my waters broke the next day!

[Princesspeachy0]

Hi @Primulas I had no idea that was possible! Nobody has ever mentioned that.
Good news you had negative results :)

[Primulas]

In our case, the other condition was picked up at a late scan so we were offered a late amnio for that reason, if you see what I mean. They explained though that the risks were lower in the sense of labour rather than miscarriage. In fact his condition (a blockage in his bowel) meant that he was very likely to come early because of excess fluid, which he did! It might be worth asking if you think it would help you feel less anxious. I felt quite strongly that we would deal with it if that were the case, but I would rather be prepared in advance of his arrival.

[Princesspeachy0]

@Primulas ah I see! That does make sense, the risks being lower because baby is nearly ready to be born.

I will ask my midwife see what she says.
Tbh I feel like because we have decided to carry on with the pregnancy without finding out if baby has DS, we have just been left without any further information as what's to come/happen.

[curliegirlie]

Have you looked at the Down’s Syndrome Association website? They have some great resources for new parents.

If your little one does indeed have Down’s there is a brilliant supportive Facebook group called “Future of Downs” which I’d recommend joining. “Don’t Be Sorry” is an awesome Facebook page/blog about a wonderful little 6 year old boy called Oscar and his family.

[Princesspeachy0]

@curliegirlie I'm going to have a look for don't be sorry blog now.
I don't have Facebook.

I had a look at the downs syndrome association website and did find it very helpful. :)

Thank u all for your help