Hemivertebrae

[viennasky]

Hi everyone.
Just had a 12 week scan. Apparently the baby has hemivertebrae and we will know more from a further scan next week.
I was wondering if anyone else has had this, ?

Hi Hun.
I’m afraid I’m at the end of my lunch break so I’ll pop back abit later when I’ve got more time but my niece has this. We found out at her 20 week Scan.
So if someone else hasn’t given you enough info by the time I finish work then I’ll pop back in on the chat x x
P.s as I know your probably worrying yourself silly, my niece is just perfect and it wasn’t as bad as was initially thought x x

My daughter has several hemivertebrae. She’s 14 now. Happy to answer any questions you have.

Sexnotgender did you mean severe ?

It's only 12 weeks so an early detection could mean it's just more severe. I know scoliosis itself is quite common but it's all a question of severity (like autism).
I'm just not sure whether they can predict accurately how severe the limitations/severity of the hemivertebrae/ scoliosis will be and to what degree it can be treated or "fixed". Ideally I would like to know asap just how severe a handicap my child will have to live with.
I've also read it's a signifier of underlying neurological issues, which is all very worrying.

I didn’t mean severe no, she has several hemivertebrae.

She does however have severe scoliosis.

No neurological issues thankfully.

Hi again
When my niece’s hemivertebrae was picked up at the 12 week Scan, they made it sound very serious.
My sister was sent to London the next day to see a specialist.
They said that congenital scholiosis could come with a lot of other problems, for example - neurological, bladder, kidney defects to name a few.
They scanned her again thoroughly and said it was amazing that the first sonographer managed to pick it up because it’s usually so hard to detect.
They scanned all her organs and said that everything else looked ok. No other issues except for the hemivertebrae but they honestly couldn’t say how severe it would be. They said she may have issues all her life and need major operations and offered my sister a termination.
My sister obviously declined and said it’s a good sign that her organs looked good with no other defects so continued with the pregnancy.
She was born small but healthy at full term. And the curve in her spine was noticeable (basically the extra piece of bone which was triangular shaped was about a third of the way up her spine and caused the top half of her spine to curve off slightly) but it wasn’t a complete shocker.
When she was tested further as she got older by specialists, they said that she made need an operation when she reaches about 4 to put rods in her back etc etc. But more tests would be done nearer the time. She walks perfectly. Her spine is strong and we can treat her like any other child.
She’s a thrill seeker and loves every rollercoaster going. And no other health issues.
At 4 years old she had an MRI where they discovered that it’s more severe then they actually thought but we got lucky.
There’s another piece of bigger bone that sits at the base of her spine which sends the spine off to the right at a severe angle. But the triangular shaped piece that’s a third of the way up send the spine back in the other direction. So apart from a cm or so, her hips and shoulders are aligned. And you would never know she had it unless you really looked.
She doesn’t need an operation now but will need to be looked at as she reaches puberty due to the possibility of everything growing too fast etc.
So the future is unknown and we definitely got lucky but she is perfect and we are thankful everyday they decided to keep her.
It’s a tough decision and you do need all the information.
I hope your as lucky as we are and there’s no other issues. But there is hope x x

Ds was born with hemivertebrae at c5 (quite high up). He had yearly scans to catch it at the first sign of movement. No movement until he was 11, then swift surgery to fuse it with a titanium plate. No movement since (23 now).

Thanks sexnotgender. And thanks everyone else. We are waiting further tests. It is stressful to hear it all so suddenly at the end of a scan in which everything else was apparently going swimmingly.
I have scoliosis myself which no one except one nurse (who noticed it upon meeting me) gas ever noticed including my parents , family, lovers etc. So I know it can be managed and doesn't stop a full life.

I can imagine how scary it is. Interestingly ours was missed on the anomaly scan but that was 15 years ago.
If you do have questions after your next scan feel free to PM me.
I won’t lie it hasn’t been an easy journey but we are at the extreme end of the spectrum. On a scale of 1-10 with 1 being a perfect spine and 10 being as bad as it gets her surgeon says she’s a 9.

Just received the same news yesterday and find everyone’s responses here so much more helpful than anything else I’ve found! All advice I have is to wait until I’ve seen the specialist next week.

If the 12 week scan shows this, then surely it’s likely to be severe..? 😥Thank you everyone!

To update everyone. Sadly the scans have revealed major "structural defects" with the fetus. The heart is too small, there is an issue with the umbilical artery, and the scanners and experts can only see one kidney (but it may be just hidden from view). There is no tribloidy syndrome which had been suspected. There are 3 hemivertebrae.
However it seems the best option is a termination as this is what the experts consider is the best option. The fetus is still young (13 weeks) and apparently the defects and structural issues will only get worse and not better. It's awful but the experts don't seem to think this is a viable pregnancy. To be honest, the worse the news for us the better at the moment as it would make any decision easier. But it seems all we have to go on is some (well respected) experts opinions and a few scans, though they seem sure there are major serious issues though haven't spelt out the consequences (apart from suspecting tribloidy syndrome).
It seems like a miscarriage will be inevitable anyway but it looks like a horrible decision will need to be made....

@viennasky oh darling, i am sorry. How awful for you. Like I said, with my nieces, the scans showed no other organ defects which was extremely lucky but rare apparently. Which made my sisters decision easier to keep her.
Your right to go with your head and terminate as sad as it is. Your very strong and my thoughts are with you. Xx