New born, suspected Down Syndrome after birth

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Hello all,

reader of various threads throughout pregnancy and particularly recently, sometimes the internet is a difficult place and every baby is slightly different - so here’s a story and an ending for anyone searching for the same answers as me.

Almond eyes and DS suspected within 20 minutes of birth.

my DD is my first child and decided to arrive face first after 27 hour labour on one of hottest days of the year. I was really surprised how beautiful her face was - I’d expected her to be in some discomfort at least but no she came out looking more beautiful than I could ever of imagined.

I was about 25 minutes into holding her after birth (Epidural too) and had midwife’s etc checking me when a doctor Id never seen spoke to my partner explaining he needed to check our girl as a midwife had raised that she thought our baby might have DS. This doctor then poorly explained this to me and basically said “because of the way she looks we must check for DS” then walked away and left me to fill the void of info. This was obviously a shock as I had always been either negative/extremely low risk of this in prenatal scans and screening.

we had to spend the night where different midwives and consultants came to look at DD.

The whole thing was built around her having almond eyes. If your reading this I am sure you have Googled almond eye newborn and all it has returns is your baby has Down Syndrome.

before we could leave we had to have DD do blood test for Trisomy 21. The consultants were brilliant throughout but none could actually tell us anything other than it was a needed test, her eyes were clearly leading trained professionals to make this judgement. We’d find out in 48 hours.

after a day in hospital we returned home totally in love but waiting for these blood tests to determine the course of our future. For us it was the uncertainty and second guessing that was hardest, who are we to challenge a doctor - they must be right?

I fell into and internet hole which was stupid but didn’t know what else to do. My DD has beautiful eyes and no other traditional DS symptoms.

after 72 hours we got results as negative, so almond eyes do not guarantee DS.

love to anyone going through anything similar, the unexpectedness of it all can throw anyone at a time of feeling most vulnerable/ confused.

Nothing useful or helpful to offer in terms of advice or experience but want you to know I'd read your post and wanted to offer my best wishes across the web! I'm sure it must be a very worrying time for you but I hope you're ok and have support. The effects of DS vary so much from what little I read, it's impossible to gauge how your and DD's lives might be affected but I hope that you and DD get whatever support you need.

@CandyLeBonBon - I think you misread the OP.

My son has almond eyes. No Down’s syndrome, and no one else has them 😂 they just pop up sometimes don’t they. But I also did lots of googling. Downs or FAS usually only things that come up.

I missed the end bit - apologies!

My friend's ds has ds, to look at him you can't tell by his face, no almond eyes or flattened features, he looks exactly like his mum. Every test she had during pregnancy was negative, the only thing was the creases on his hands.

I’m glad you got the results so quickly.

You and your partner have been through a lot- be easy on yourselves. It might be the case you need support dealing with your feelings from such an emotional rollercoaster more long term. Don’t be scared to approach your MW or GP if you do.

So sorry you were put through that uncertainty at what should be such a joyous occasion.

I don't think, generally, staff always have much experience around this subject any more. Only based on your story and someone else's I know, whose child did have DS and the nurses and doctors didn't have a clue and left the lady having just given birth, in much uncertainty and fear.

My mum and dad has the same experience 30 years ago, except I gave a singular palm crease. You stayed in longer those days so they got the news I was fine before we all came home.

My 2nd ds - friends on seeing him “oh he looks like he has…..” (petered out). His wife “yes I know what you mean, he looks like he is downs syndrome”. His eyes were almond shape.

Strange they had to say that. He’s 22 now,isn’t, and apart from - I thought they voiced opinions they shouldn’t, I wasn’t worried about him.

Exactly the same thing happened when I had my son 22 years ago !! Kept saying about his eyes then asking for a picture of myself as a baby ! Then sent us home without testing him so we didn’t know 100% if he was or not ! In the end I had to go see the g.p for appointment and said I was worried and they sent him for tests all came back negative but the g.p said they should not have mentioned it then not to test ! Wishing u all the best !
At the time I had accepted he might but I loved him anyways it made no difference if he was or not , the one good thing is at least they have tested your Dd x

I had recurrent bleeding in one pregnancy, a woman I worked with was due to have her first GC round the same time. Every time her DIL and I seemed to bleed at the same time. My pregnancy continued but she lost her baby. The woman came into work and told us the sad news and said, "nature knows best there was obviously something wrong with the baby."

This message played on my mind but I never voiced it. My 10lb baby arrived after a difficult forceps delivery, he didn't look anything like my other babies, in fact he looked like he'd gone 10 rounds with Muhammad Ali. I became convinced he had DS and that no one was telling me. Every time I saw two midwives or other staff talking I watched them, convinced they were discussing my baby and how to tell me.

It lasted a few weeks, I never asked anyone, never shared my worries but I was convinced it was true. It made me incredibly protective of my baby particularly when people commented that he didn't look like his sister who was a very beautiful baby. He grew into his looks.

We had a similar experience. We were told our DD had Downs syndrome after birth. She did have all the typical facial features, although not the single palm crease. They did a blood test and we were discharged at 5 days without a result. They phoned a couple of days later to say that she didn't have Downs Syndrome. She did have another chromosome disorder though. We had spent a week researching Downs Syndrome and telling our families that we had a baby with Downs Syndrome, so it was quite a rollercoaster! I found that lots of people made stereotypical remarks when I told them she had Downs, so in some way it was a relief that instead she had a condition so rare no one we knew had ever heard of, because people didn't have a preconception of how they expected her to be.

I have almond eyes, I'm always told they're beautiful.
I've always wanted big round eyes personally.

They can't do the procedure (test for DS) without letting you know they want to, and reasonable for them to say why.

my cousin was overwhelmed & devastated to have a baby with actual DS. She was under 30 so hadn't had screening. She fiercely loves her son, but it was indeed a very difficult shock when he was born.

I had a similar story with DD2.

Super stressful pregnancy (following 4 mc), was having scans monthly to check things were ok. Was measuring small at 37 weeks with v low fluid so they wanted to induce me.

Was told shortly after birth that DD had markers consistent with DS, they took her away for further tests. Was told the next day before discharge that she was negative for DS. Her marker was the single palm crease in both hands.

I think they handle it ok, but after the stress of multiple mc etc I was paranoid for awhile that there was something 'wrong'. Started to relax after the first few weeks. She is 10 today and a wonderful little girl.

Ahh we had this with my DD, 8 years ago! Handled appallingly by the midwives. No one would tell me anything. Different people coming in and staring at my newborn. After a couple of hours of not knowing what was going on they said she had a singular palm crease and ‘a DS look’ apparently.
It wasn’t the fear of her having DS, it was the unknown and thought of underlying illnesses that petrified me.
She saw three doctors who were all adamant it wasn’t but the midwives insisted on keeping us in for blood tests. I was given no support as a new mum and I remember how terrifying I found those first few days waiting without anyone to talk to.
I’m so sorry you went through similar!

My daughter has almond eyes and a single hand crease, she’s was born in 2003 and the pedestrian said it was interesting but no ds

Wow, what a rollercoaster

Thank you for posting this, OP! We went through similar and, to my horror, are reliving it as geneticist wants to retest our ds for Down’s syndrome to be sure the first sample was correct. Similar reasons as others—single palmar creases, flatter facial features, etc. But to look at our boy a lot of this seems minor and most probably wouldn’t notice these things. It’s shocking to see how many people have gone through this. It’s definitely hard on families, especially if staff don’t handle things well.