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Antenatal tests

Hyperextension of fetal neck and spine

2 replies

JRW9 · 11/03/2024 18:56

Hi mums, mums to be…

I just want to share my story as there was little available during my pregnancy last year and it was all really stressful!

We were referred to fetal medicine unit in Leeds last year due to our baby’s unusual position at 32 weeks. He was found during a routine scan to be in a star gazing position which is essentially hyperextension of the neck and spine. After various tests and scans including an MRI, we were unable to determine if the baby would encounter any challenges when born. The baby didn’t change positions and was delivered by planned c-section at 38 weeks, 24/04/2023.

Our baby required immediate intensive care support after delivery for various reasons including breathing support. In the few first days of his life, numerous consultants thought he had a genetic condition due to soft dysmorphic features including low set ears, high palate, significant small jaw - he was also unable to open his right eye initially. In addition to this, he born with a curved spine as a result of his position. His also suffered with significant head lag.

After a stressful 8 days on neonatal, our son, Jack was allowed home. A brain scan was completed in the first few days, and this came back normal. Genetic testing came back clear a couple of weeks later. His neck and spine have corrected themselves with time and he is on track developmentally with his peers. He crawled normally at 9 months is now trying to walk unassisted… his favourite thing to do now is climb! His facial features settled down and looked normal after a couple of weeks after his birth. In a nutshell, he’s turned out just fine, and is a very happy little boy!

When our son was found to be in this position, the consultant we were referred to had only seen one baby in this position previously and the baby corrected itself prior to birth. Our paediatricians haven’t encountered a baby in this position in their combined 40 years so I wanted to write this post to let you know the outcome. It would’ve been so nice to know this when I was pregnant as it was a very difficult time. 

If you are reading this, I’m sorry you’ve found yourself in this position. It was a very stressful end of pregnancy for us and I wish I could’ve had a crystal ball. My boy is doing amazingly well and you wouldn’t know he had his difficulties in the womb and during the first few weeks and months of his life. He’s happy, healthy and very cheeky!

Wishing you all the best xx

Hyperextension of fetal neck and spine
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KidsDr · 11/03/2024 19:07

What a fantastic story, thank you for sharing and I'm so pleased that your son is happy and thriving. I have never come across anything like this, those images are extreme!!!

My first thought was some kind of hideous life limiting arthrogryposis syndrome, I would have been worried sick. How wonderful to be wrong!

This is a good reminder in being v conservative / cautious in prognosticating re possible syndromes and/or facial dysmorphism in newborns. Thank you for sharing your story.

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Denimdenimdenim · 11/03/2024 19:24

Amazing story ❤️

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