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1 in 20 pregnancies affected by hypermobile #EhlersDanlosSyndrome & Hypermobility Spectrum Disorders

If you’re interested in childbearing with hypermobile #EhlersDanlos syndrome and Hypermobility Spectrum Disorders our new article is out now…

👉 Understanding hypermobile Ehlers-Danlos syndrome and Hypermobility Spectrum Disorders in the context of childbearing: An international qualitative study

Co-authors include Gemma Pearce & Emma Reinhold 🙌🏻

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Hypermobile #EhlersDanlos Syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD) have profound and life-threatening consequences in childbearing, and it is now estimated that hEDS/HSD affect 6 million (4.6%) pregnancies globally per year..rounded up, this equates to almost 1 in 20 pregnancies!

 

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What did participants describe?

  • A worsening of symptoms during pregnancy
  • Postnatal complications
  • Ineffective anaesthesia
  • Long latent phases of labour quickly developing into rapidly progressing active labours and births (precipitate labour/precipitate birth)
  • Maternity staff panicked by unexpected outcomes
  • Healthcare professionals  lacking  knowledge and understanding
  • Poor maternity care resulting in a disengagement from services
  • Birth Trauma
  • Stress
  • Anxiety
  • An avoidance of future childbearing
  • Difficulties in holding, caring for, bonding with and breastfeeding their babies

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The blog page for this work can be accessed here

How can you help?

  • maternity tool has been co-create to support both professionals and pregnant people in decision making. It is freely available for download and wider use

download maternity tool

hEDSTogether.com is also available to keep everyone up to date with this work via @hEDStogether

If you are using this tool to create an impact in the world, please tell us about it via the contact pages hosted at hEDSTogether.com.

Thanks to everyone who participated in and supported this research!…Let’s keep putting our #hEDSTogether via research!

Follow me via @SallyPezaroThe Academic MidwifeThis blog

Until next time…Look after yourselves and each other 💚💙💜❤

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THE CIRCLE OF TRAUMA FOR PARENTS & PROFESSIONALS #ThinkTraumaNow

Today, ‘Make Birth Better’ (@birthbetter) published it’s new report outlining the circle of Trauma for both parents and professionals. I am immensely proud to have contributed to this report and to work with other esteemed colleagues looking to make a difference in this context.

THE MAKE BIRTH
BETTER SURVEY 2019:
THE CIRCLE OF
TRAUMA FOR
PARENTS AND
PROFESSIONALS

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The full report can be found here

#ThinkTraumaNow 

It really is so important that we recognise the trauma birth workers can experience as a result of their work. Many midwifery and obstetric staff are affected by vicarious trauma because of the events they have seen, the conditions they are working in and a lack of emotional support. This is significant because as well as birth workers being entitled to a psychologically safe professional journey, such psychological distress can also result in poorer maternity care.

As a result of this report, the following calls to action have been made:

1. Address trauma prevention for maternity staff and parents.

2. Think long-term about trauma treatment for maternity staff and parents in the future.

3. Act on the requests from Birthrights and The Royal College of Midwives (RCM) for maternity services to be ringfenced and for all women to be offered a safe and positive childbirth experience and ensure that new NHS England clinical guidance is followed

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Click here to read more about this work and the #ThinkTraumaNow campaign

Follow me via @SallyPezaroThe Academic MidwifeThis blog

Until next time…Look after yourselves and each other 💚💙💜❤