Support Groups, Research & Treatment Centres

Below are links to bits and pieces that I touch along my way, I have found them helpful, comforting or useful.....you may also...

CHI Research Papers and Treatment Help

CHI (chronic histiocytic intervillositis) support  - the support site that I maintain for anyone affected by Chronic Histiocytic Intervillositis (CHI/CHIv) also known as Massive Chronic Intervillositis (MCI). 

This is the only site that I am aware of that groups together all medical papers.  I have also published my papers there with recommended treatment plans based on my experience and experiences of others who have received this diagnosis and a paper explaining what CHI is. 

As a result of the work I did here we were able to form the CIUErn (‘Chronic Intervillositis of Unknown Etiology’ Research Network)  an expert network of medical professionals with a keen interest in researching, treating and understanding CHI and its related conditions. We participate in regular Expert Meetings with other medical professionals and pathologists to collaborate on successful treatment plans at the CHI Centres of Excellence.

 We also have a Facebook support group.

CHI - Other Blogs of Interest

Evelyn - Navigating the world after losing a baby. One step at a time.
Hope - Our Story of Babyloss due to COVID

Lissa Poppy -  Beautiful site that belongs to a dear friend whose precious little girl that was born in Westmead, Sydney, Australia on March 08, 2002, lived for 3 hours & 13 minutes due to CHI/MCI

Aaron Jarnason - Born early and very small he gave it his best shot.  Beautiful little man, this blog is by his Mummy and she blogs about all things Jarnason, if you want to read Aaron's precious story, scroll back and read from May 29th 2011.

Wyatt Olig  - A testament to a brave little warrior man who fought against CHI to spend some precious time with his Mummy. 

Help and Hope through Support

Twins Trust Bereavement Support Group - The Twins Trust Bereavement Support Group (BSG) exists to support all parents and carers of twins, triplets or more who have died whether it was during pregnancy or after pregnancy. We are sorry for your loss and hope that by making contact with the BSG you will find some comfort to help you with your grief.

SANDS - Stillbirth and Neonatal Death Charity
A Child of Mine - offers a supportive website, with information and guidance on all aspects of losing a child, from the practicalities of when a child dies and more

Tommy's - Support Tommy's, a charity that funds medical research into miscarriage, stillbirth and premature birth and provides information on having a healthy pregnancy.
Finleys Footprints - A beautiful site that offers advice and hope in buckets

Aching Arms -Baby loss charity run by a group of bereaved mothers who have experienced the pain and emptiness of leaving the hospital without their much wanted baby

Molly Bears -  MollyBears.com is a US non-profit organisation that creates weighted teddy bears for families coping with infant loss. Will deliver to the UK.

The Lily Mae Foundation - The Lily Mae Foundation raises money in order to provide much-needed support to Parents and Families who have lost a baby to Stillbirth or Neonatal Death.

Loss Through the Looking Glass - A shared blog created by three bereaved mothers
Saying Goodbye - Website for the Saying Goodbye services, the national set of remembrance services, the first national set of remembrance services for people who have suffered a miscarriage, early term loss or early infant loss.
Aidan's Elephants - Aidan’s Elephants is a non-profit organisation based in the UK. We are a sister charity to 4Louis, who aim to supply hospitals throughout the UK with the resources to help parents when a baby dies before, during or after birth.
Sand's Book - How I came to hold you book information and other handy links
Faces of Loss: A community of women putting a face on miscarriage, stillbirth and infant loss. Supporting and providing support.

Help and Hope For Dads - most of the groups above support Dads but the following as specifically run for Dads

Miscarriage for Men - Helping one bloke at a time.

Grieving Dads Project - This project is designed to reach out to all bereaved dads and to provide a conduit to share their stories.

Little Footprints Father's Page & Resource Pack- written by fathers for fathers from our support group

Dad Links - Life after baby loss: Grieving dads get support from online peers

Hope and Help through Reading

'Exact Replica of a Figment of my Imagination' superb novel - direct link to this and more is available on the home page of this blog site.

TAMBA's Bereavement Booklet - available through TAMBA (BSG) (details below)
The Lone Twin - Understanding twin bereavement and loss

For After

Now I Lay Me Down to Sleep - UK photographers  - Professional photographers who can take some amazing photos of your little one, normally without charge.

Cheeky Chums Online - Tiny Baby Bereavement Section, Micro Baby Loss Clothes, Tiny Baby Burial Cribs, Fetal Demise Pouches, Tiny Teddies from 1 inch

Funeral Songs  - I spent a long time trawling for the most suitable song.  This site showed a good selection.
Funeral Poetry- Another useful site for readings and beautiful poems

For the Memories
Bereavement Memory Boxes - simple wooden memory boxes at reasonable prices.
To Write their Names in the Sand - stunning work by Carly Dudley who writes your child's name in the sand at sunset creating the most stunning memorials.
The Butterfly Beach - sister site where Carly draws butterfly memorials.
International Babylost Mothers Day - A site about Mother's Day for Special Mummies
International Babylost Father's Day - A site about Father's Day for Special Daddies
Small Bird Studio - If you like my site go and speak to Franchesca about yours, she's brilliant!
My Tangible Peace - Hand-sculpted miniature baby angel sculptures
The Memory Tree - UK Specialist for Unique Baby Loss Keepsakes and Gifts
Gabriel's Garden - Picks flowers and takes a photo adding your angel's name
Barely There Bears - tiny little hand-stitched bears made on commission


Articles 

Stillbirth: a pain left unspoken - The Guardian (UK) 19/08/12
Stillbirth causes a grief that hurts unlike any other - The Telegraph (UK) 11/08/12 Why Stillbirth Remains a Mystery - BBC News (UK) 07/08/12
Heartbreaking moment a mother cradles stillborn daughter midwives failed to spot was critically ill - Daily Mail (UK) 21/08/12
Soya and egg yolk, the ingredients for motherhood: Woman who had FIVE cycles of IVF finally has twins after being put on special diet - Daily Mail (UK) 17/05/12
Losing Iris: the quiet despair of a child stillborn - The Guardian (UK) 21/01/12
1,200 stillbirths a year 'could be avoided' - The Independent (UK) 18/01/12
Stillbirth exhibition reveals a devastating loss - The Guardian (UK) 08/12/11
Parents who lose a baby can die of a broken heart - The Independent (UK) 12/09/11
Experience: My baby was stillborn - The Guardian (UK) 26/08/11
Other blog sites for angels can be found on the home pages under 'My Blog List'