New Educational Tools Launched to Support Childbearing with Hypermobile Ehlers Danlos Syndrome and Hypermobility Spectrum Disorders

On the 5th of May (International Day of the Midwife – #IDM2020) 2020 – The year of the nurse and the midwife, the @hEDStogether team launched new educational tools to support childbearing with hypermobile Ehlers Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD). Co-incidentally, May is also Ehlers Danlos Syndromes and Hypermobility Spectrum Disorders awareness month. You can view the online launch of these tools along with our other @GOLDMidwifery presentations here at the GOLD Online Education Midwifery Conference 2019/2020.

Citation: Pezaro, S., Pearce, G., & Magee, P. (2020). New Educational Tools to Support Childbearing With hypermobile Ehlers-Danlos syndrome and Hypermobility Spectrum Disorders. GOLD Online Midwifery Conference. May 5^th.https://www.goldlearning.com/ce-library/all-lectures/new-educational-tools-detail

The final tools comprised:

• An i-learn module launched by the Royal College of Midwives to their members (search under the letter ‘H’ for hypermobility in the online library)
• A maternity tool freely available for download and wider use
• An infomercial to raise awareness and mobilise knowledge in relation childbearing with hEDS/HSD

We were also able to launch our own website – hEDSTogether.com and keep everyone up to date with the project via @hEDStogether

We have made these tools freely available where possible. You can visit the project page to learn more. If you are using them to create an impact in the world, please tell us about it via the contact pages hosted at hEDSTogether.com.

Useful hashtags to follow on this topic include:

#EDSmaternity

 #hEDStogether 

#EhlersDanlosSyndrome

#myEDSchallenge

#myHSDchallenge

#EDSAwarenessMonth

#raisingawarenesstogether

Thanks to everyone who joined us for the launch and co-created these tools in partnership with us!…Let’s keep putting our #hEDSTogether via research!

Follow me via @SallyPezaro; The Academic Midwife; This blog

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

10 Top tips for caring for women with Hypermobile Ehlers-Danlos Syndrome in pregnancy for International Day of the Midwife #IDM2018 & #EDS awareness month

#IDM2018 or ‘International Day of the Midwife’ falls on May the 5th of every year. The theme for 2018 in three languages is…

• Midwives leading the way with quality care
• Sages-femmes, ouvrons la voie avec la qualité des soins
• Matronas liderando el camino con un cuidado de calidad 

Also… Every May is Ehlers-Danlos Syndrome (EDS) awareness month around the world.

As such….for #InternationalDayOfTheMidwife, and EDS awareness month… I shared 10 top tips for caring for women with hypermobile Ehlers Danlos Syndrome (hEDS) during pregnancy birth and beyond. These tips come from my latest paper, authored in partnership with Dr. Gemma Pearce (@GemmaSPearce) and Dr. Emma Reinhold (@DrEReinhold ), entitled …

Hypermobile Ehlers-Danlos Syndrome during pregnancy, birth and beyond

Here, we present care considerations for midwives and the multidisciplinary team caring for this unique subgroup of childbearing women. However, we hope that women with hEDS will also benefit from this paper, as they make decisions in partnership with their professional health care teams. You can read the press release from this paper here.

I would personally like to thank the board members of the British Journal of Midwifery for making this article FREE for all to read. I would also like to thank the Royal college of Midwives for sharing news of the article here…and the Nursing Times for sharing further news here.

So what can midwives do to maximize the quality of care given to women with hEDS throughout pregnancy birth and beyond?…First of all….Know the facts…

• There have been no prevalence studies since EDS received a major reclassification in 2017
• Earlier estimates from 2006 suggest a prevalence rate of 0.75-2% for hyper mobile EDS
• hEDS is the most common form of EDS
• Up to 78% of women with hEDS could also have a diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS)
• POTS predominantly occurs in women of childbearing age
• EDS is considered to remain largely under diagnosed.

Tips for midwives

1. Discuss individual needs with women, as no two cases will be the same. Do this early, and always in partnership with the woman and the wider multidisciplinary healthcare team.
2. Consider early referral to obstetric, physiotherapy and anaesthetic teams in partnership with the woman.
3. Consider the need for alternate maternal positioning during pregnancy, birth and beyond. To minimise the risk of injury, positioning should be led by the mother.
4. As wound healing can be problematic, the use of non-tension, non-dissolvable, deep double sutures, left in for at least 14 days is advisable.
5. Wait longer for local anaesthetics to take effect and consider giving maximum dosage. Always be led by the mother on whether pain relief is sufficient
6. Always consider the significance of a routine observation in light of existing POTS and/or EDS symptoms
7. Promote spontaneous pushing rather than directed pushing during birth
8. Promote effective pain management and the use of therapeutic birthing environments to promote reductions in stress
9. Consider additional joint support for newborns suspected of having hEDS
10. Document all joint dislocations and bruising marks on the newborn from birth to avoid misdiagnosis and/or wrongful accusations of mistreatment.

Research into EDS and childbearing is in it’s very early stages. We hope to build on this work to make a difference for all women with hEDS during pregnancy, birth and beyond.

If you would like to follow the progress of this work going forward..

Follow me via @SallyPezaro; The Academic Midwife; This blog

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

 

 

A reflection on #internationaldayofthemidwife (#IDM2017)

Happy #internationaldayofthemidwife or (#IDM2017) as it is indeed the 5th of May 2017. I wanted to do a quick reflection (and a little dance of happiness) about the fact that the focus of this year’s International Day of the Midwife is…

 “Midwives, Mothers and Families: Partners for Life!”

With messages coming from the International Confederation such as…”It is very important that midwives and mothers both acknowledge the reciprocity of their relationship” – Scarlett #IDM2017 @ToyinSaraki

Yes…..we work in PARTNERSHIP with women and their families!…mothers, families and midwives are all equal partners….this means that we can finally break the mold and state openly that we, as midwives can also be prioritised!…Fabulous!

I have often wondered whether terms such as ‘Patient comes first’ is really healthy…as it is terms like this which often infer that midwives come second at best. What do you think?

I have also been picking up on some other great messages, pictures and videos this #IDM2017..such as…..

 

Happy International Day of the Midwife from Annie and Ossie x @NHSMillion @alibrodrick @optimalclamping @JacqueGRCM @UWE_Midwifery @butNHS pic.twitter.com/62yGRPKGuz

— Rachel Ellie Gardner (@RachelEllieG) May 5, 2017

 

I have also been dipping in and out of the Virtual International Day of the Midwife conference sessions a FREE conference that happens online every year….I have presented my work at @VIDofM (#vidm17) before, and it is such a great opportunity to get people together in one place from all over the world!

This year for #Internationaldayofthemidwife I have recorded a podcast ‘Made by midwives for midwives’. Hosted by London based midwives Anthonissa Moger and Kate Whatmough….  (The Midwifery Podcast: Os closed, go home.)..I will be sharing this in an upcoming blog post…but for now..I am off to enjoy the rest of #IDM2017…there is such positivity in the midwifery world today…Let’s keep the momentum going ❣🎓❣

 

If you would like to follow the progress of my work going forward..

Follow me via @SallyPezaro; The Academic Midwife; This blog

Until next time…Look after yourselves and each other