Microtia (Greek for ‘little ear’) is a malformation or misshape of the external part of the ear (pinna) and can vary in severity from the ear being smaller than expected to varying degrees of absence of the outer ear. In some cases, a smaller or incomplete ear canal and/or hearing apparatus may be present or missing altogether (atresia). Microtia is frequently accompanied by atresia because the baby’s outer ear and the ear canal develop together during pregnancy.

Microtia is a rare condition affecting 1 in 6,000 babies. It seems to affect more boys than girls and affects right ears more than left. Unilateral microtia (one ear) is more common, however approximately 1 in 10 children affected have bilateral microtia (both ears).

More information about microtia can be found in our New Parents Guide here.

 

 

Microtia Mingle (Microtia UK Support Group) is a closed group for adults, children or families who have unilateral or bilateral microtia atresia. Follow us and read our latest posts on Facebook, Instagram, Twitter and YouTube.

We are also available via email for support or to answer your questions. Please email info@microtiauk.org.

We have a range of leaflets or booklets available for free. If you’d like to request copies of these then please get in touch.

Microtia UK Leaflet

New Parents Guide and Reconstuction Guide

 

 
 
 
 

 

 

Microtia UK was established as a charity in 2013, and evolved from the Microtia Mingle support group on Facebook by three Mums who each have children born with microtia. Liz Jones, the founding member of the Facebook group, joined forces with Hana Thalova and Ali Daniels to create the first ever UK charity which offered support to those born by microtia atresia.

The charity became registered in 2014, and has gone on to produce a nationally recognised New Parents Guide, offered annual family information events, developed resources and supported medical and psychological research through the provision of grants. We continue to support more families every year.

 

Trustees, Tina, Geoff and Matthew

Trustees

  • Hana Thalova
  • Liz Jones
  • Ali Daniels

Non-Executive Directors

Non-Executive Advisors

  • Alex Seifalian – Professor of nanotechnology and regenerative medicine (UCL)
  • Michael Markiewicz – Consultant paediatrician (Chelsea & Westminster Hospital)
  • Neil Bulstrode – Consultant plastic surgeon and lead clinician for the department of plastic surgery
  • Ken Stewart – Consultant plastic surgeon and lead clinician for plastic surgery (NHS Lothian)
  • Catriona Moffat – Chartered clinical psychologist (NHS Lothian)
  • David McAlpine – Professor of auditory neuroscience (UCL)
  • Walid Sabbagh – Consultant plastic surgeon (Royal Free Hospital)
  • Greg O’Toole – Consultant plastic and reconstructive surgeon (Royal Free Hospital)
  • Sebastian Hendricks – Consultant audiovestibular physician and paediatrician (GOSH)
  • Celia Flatley-Priddey – Adult with microtia

Independent Consultant

  • David Gault – Consultant plastic surgeon (Private Practice)
  • We aim to keep up to date with the medical, scientific and technological advances within the fields of microtia, hearing and reconstruction.
  • By keeping up to date with the advances in the area of microtia and by giving parents a range of information, we hope that they will be able to make informed choices about what is best for their child in conjunction with the professionals involved with the family.
  • We aim to organise annual events where families and medical professionals can come together to share information, meet others and discuss concerns.
  • We aim to educate families, schools and medics about how to view ‘difference’ positively.
  • We are interested in developing psychological research related to the impact of microtia (including how people with microtia view themselves; what is the psychological impact of having reconstructive surgery as a young child).
  • We would like to raise awareness of, and campaign for, equal access to hearing aids for all children with microtia (unilateral and bilateral).
  • We would like to develop a range of publications and resources to support people with microtia, their families and the professionals that work in the field of microtia.
  • We would like to be involved in the decision making at a management and policy level.
We would like to thank the microtia community and their friends and family for their continued support, generosity and for helping us to accomplish so much. We have documented some of our main achievements below, along with our future goals. If you would like to help the charity further with our aspirations, please contact us via email info@microtiauk.org.

Achievements

  • In 2010 Microtia Mingle Support Group created on Facebook. Then in 2012 the children’s book ‘Issac and Lilah (A story about similarities and differences)‘ was written and printed to promote a positive image about microtia.
  • In 2013 the Microtia UK charity evolved from the Microtia Mingle Facebook group. The charity then organised Coram Fields picnic – the first time in the UK that medical professionals and those involved in scientific research were invited to present on key topics to those affected by microtia and their families. Workshops were created for adults with microtia to talk about their life experiences and to learn from them. The charity website was also launched.
  • During 2014 Microtia UK was awarded the charity status. So charity bracelets were produced to raise awareness within the community and to raise funds for Microtia UK. Their first fundraising event took place with a charity launch party and the New Parents Guide was published and distributed. The charity presented in the BAPRAS conference and contributed towards the New Care Standards for patients with microtia/atresia. To view, click here. A new children’s book, ‘Isaac Gets His BAHAs Fitted!’, about Bone Anchored Hearing Aid surgery was written and published. The printing is currently funded by MED-EL & Oticon.
  • In 2015 the cuddly toy/mascot was designed to raise funds, awareness and promote a positive self image. Paradise Park Microtia UK Family Fun and Information Day was sponsored by Cochlear. And Cochlear and Oticon agreed to sponsor our New Parents Guide to help with the printing costs.
  • During 2016 the charity held a London and Edinburgh Microtia UK Family Fun and Information Day sponsored by Cochlear and Oticon.
  • In 2017 the life size elephant mascot was created to raise awareness
    at events and the London Microtia UK Family Fun and Information Day was
    held and sponsored by Cochlear and Oticon.
  • 2018 saw the launch of the new charity website. The charity secured
    sponsorship for the charity fundraising vests which also brought the
    launch of new children’s fundraising t-shirts, so they can join in with
    raising awareness – Thank you AGILIS Mobile. The London Microtia UK Family Fun and Information Day was held and sponsored by BHM-Tech, Cochlear, MED-EL and Oticon.

The following research grants were issued:1) Aston University, Dr Amanda Hall for further research into Single Sided Deafness.2) Centre for Appearance Research, University of England, Bristol for further research of psychological impact if Microtia.3) Great Ormond Street Hospital for cell Incubator to try to improve ear and facial reconstruction method for the future.4) Scottish National Ear Reconstruction Services & the University of Edinburgh for Scaffold identification for ear reconstruction.  All results be shared with the Microtia community and medical professionals linked to Microtia.

  • Thanks to AGILIS Mobile in 2019 for their continued sponsorship of the fundraising vests and t-shirts. The London Microtia UK Family Fun and Information Day was held and sponsored by BHM-Tech, Cochlear, MED-EL and Oticon. The charity also held a mingle at West Midlands Safari Park. The New Parents Guide was reviewed, amended and printed. The charity secured a grant thanks to The National Lottery Fund to help create a new children’s book. The following research grants were issued:
 
1) The VTCT Foundation who awarded funding for research in conjunction with the Centre of Appearance Research. This research will look at exploring parents’ experiences of having a child with microtia, including the support needs of both parents and young people, the availability and experiences of support, and decision making about surgery.2) University College London, Patrizia Ferretti and Neil Bulstrode for research into ear reconstruction using cartilage bioengineered from autologous cells.3) Swansea University, Thomas Jovic to support ongoing research efforts in cartilage tissue engineering for ear reconstruction.4) Aston University, Saira Hussain and GOSH, Robert Nash, Neil Bulstrode and Lindsey Edwards are aiming to understand the patient experiences of those with microtia and improving their clinical decision-making processes. The two institutions will be working in parallel to help enhance the knowledge currently available on this population to help improve outcomes for those with microtia.5) GOSH, Robert Nash, Neil Bulstrode and Lindsey Edwards for a study to compare academic attainments in literacy and numeracy with those predicted on the basis of intellectual ability, in children with unilateral microtia.6) Colin Link for Stage 1 – supporting the creation of initial samples of silicone implants and travel.7) Evelina London, Dr Orla Fehily and Melinda Edwards are creating an audio-visual resource for young people who have microtia and atresia. Lead by the ‘experts by experience’, the film will provide an invaluable resource for young people, their friends and family, and professionals involved in their welfare, from health-care to education.
 
  • 2020 was a difficult year for everyone due to the pandemic. However, the charity were able to continue supporting members by giving out free face masks, hand sanitiser, face shields, face mask filters and leaflets, teddies, pens and stickers from the charities sponsored hearing aid companies. Microtia UK also held free online sessions for children, from football and dance zoom classes to receiving a free violin and violin classes, along with a Christmas zoom fun session for adults and children.
  • In 2021 the charity were still unable to hold any face to face events due to the continuous changes from covid-19. However, this did not stop the charity from growing, as a new book was published for children aged 8+, called MI9: The Beginning. The book can be found on our shop page in full colour, or in black and white on Amazon and Waterstones. Microtia UK was also given a grant to create a new education booklet for families which will further their helpful resources. MED-EL and Cheezelo became the charities new sponsors of the fundraising vests and children’s t-shirts as well.
  • 2022 saw the charity organise four events throughout the year. These ranged from our London event, to a day out at Manchester LEGOLAND, a trip to the Space Centre and a Zoo! We thoroughly enjoyed seeing you face to face again.

  • So far this year we have already had a collaboration event with other charities in Scotland and our London event which was a great day! We continue to work alongside medical professionals and discussions have begun about creating information videos! We also received new sponsorship from Blue Sky CAD LTD for our free fundraising tops.

 

Goals

Produce more information leaflets. Help campaign for mandatory provision by NHS of BAHA soft bands for children with microtia. Continue to organise annual events for experts to present on chosen topics to the microtia community and continue to arrange microtia community mingles. Improve psychological support. Work with medical professionals to create microtia centres of excellence in the UK. Produce short film on microtia promoting awareness. Continue to raise awareness through popular sporting fundraising events. Continue to support research in to the advancement and improvement of care or life of those with microtia in the following areas; reconstructive surgery, psychological impact on looking different, impact of single sided deafness and lastly the improvement of hearing technology.

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