An EA/TEF Story Inside and Out

I will never forget the moment my world turned upside down: on Friday the 13 March 2009.

I was thirty weeks pregnant, my husband was out of town and I was alone in a city I had just moved to.  I was folding laundry when suddenly, I felt something was happening, my water broke. “Please, not now baby!” I pleaded while holding my deflating belly.

Twelve hours later, Castalia’s heart was dangerously slow and I was rushed to the Operating Room for an emergency C-section. Even as a first time mother, I knew very well what a quiet birth meant. I felt numb.

I vividly remember the painfully heavy silence growing in the room, even when I finally found the strength to ask where my baby was. I was laying alone on the operating table, feeling the rhythmic pull of the stitches applied to my vacant womb, preparing myself to be told that my baby was dead.

The next thing I remember is slowly waking up and seeing a figure, a doctor stood by the door. It took a lot of effort to focus on the words he was saying, I was feeling very groggy still. In a detached voice, he announced:  “We suspect that your infant has Esophageal Atresia. She will be transferred to the Children’s Hospital to get evaluated and possibly undergo surgery today. We need you to sign some papers.”

"-Esopha…what? Can you explain what this means in terms that I can understand?”

Just like most people, I had never heard of this GI (gastro-intestinal) birth defect that affects one out of 3500 births. In a nutshell, it means that her esophagus, her food pipe, was not attached to her stomach. In her case, her upper esophagus ended in a pouch while her lower esophagus connected her stomach to her trachea.

I had no idea what that meant for her future or for ours.

EA/TEF (Esophageal Atresia and Tracheoesophageal Fistula) kids seem to have widely different journeys that do not simply stop at “getting repaired.” Even if their primary closure is successful, in most cases the esophageal muscles and nerves don’t work properly. It can make eating and drinking difficult or impossible, resulting in random choking episodes, strictures or Gtube feedings.

Furthermore, about half of them, like my daughter, have other birth defects.  Most also have GERD and will need to be on antacid medicine their whole life.  EA/TEF kids tend to get sick more often and stronger than other children but there hasn’t been much research to truly explain why.

They often have tracheomalacia - floppy airways. It can make it hard for them to breathe, especially when they are sick and it gives them a deep barky chronic cough that earns them lots of stares in public.
My resolution for 2015 was: to find a way to raise awareness and money for the condition. To accomplish both, I decided to write a children’s picture book called “An EA/TEF Story Inside and Out” to empower EA/TEF children, educate the public about the condition and offer ways for others to help.

 
It is available on:
http://www.lulu.com/content/paperback-book/an-eatef-story-inside-and-out/16463739 
Or visit www.eatefbooks.com for more information. It is available worldwide in English (American and British Spelling) and in French. Coming soon in Spanish, Italian and Croatian.

Thank you for your support and please help spread the word about the condition.

Vanessa Munsch

Adventures of the little black trackas

Written by Merle Hall
Graphic design and illustrations by Gary Saunders
Neenann: Mill Park, VIC.

To celebrate NAIDOC week 2015, AWCH purchased Adventures of the little black trackas, we are celebrating by looking at a children’s resource which “studies Aboriginal and Torres Strait Islander arts and crafts”. The resource is a collection of four books, “welcome in Bangerang” country poster and CD, created for children aged 1 to 8. The children’s books and CD teach Bangerang language words. Through these vibrant books children discover Bangerang culture and learn about habitat and environment.


The books can be read to individual children or within a class. With 15 suggested activities written on the back cover, children can be inspired to write or create their own artworks. Local Aboriginal words can be substituted for Bangerang language words for people from a different Nation/Clan area.

The four books are:

• Adventures of the little black trackas: Yedabila (animals)

• Adventures of the little black trackas: Wala yedabila (water animals)

• Adventures of the little black trackas: Djunda (bird)

• Adventures of the little black trackas: Bamanebala (insects)

Each book features a different child who takes readers on a tracking journey. The readers are asked questions, learning Bangerang words as they look closely at the animals, birds, insects and habitat. Each journey starts with an introduction by the narrator who is the little black tracka. Readers accompany the little black tracka and learn about habitat and Aboriginal culture. At the end of each story the focus is returned to the smiling face of the little black tracka and the shared experience.

Graphic design and illustrations are in bright and earthy tones, they are both expressive and wonderfully detailed. The glossy A4 pages and bold pictures make these books useful for classroom reading. The books meet “Victorian essential learning standards VELS level 1 and 2 (pre, grade 1 and 2)”.

Adventures of the little black trackas is available for loan from the AWCH library or can be purchased through the Secretariat of National Aboriginal and Islander Child Care, SNAIC distributes this resource on behalf of the Neenann family, publishers. SNAICC writes how the resource supports “the Early Years Learning Framework for Australia of Belonging, Being and Becoming”. Visit their website to find out about the cultural significance of Adventures of the little black trackas.

Jillian Rattray

AWCH librarian

http://Library.awch.org.au

NAIDOC week 2015

Indigo solves the pzulze

Written by Wendy Fitzgerald, Illustrated by Sophie Norsa
Little steps publishing, NSW 2012
ISBN 9781921928987 (hardcover)

"A book with a message about a girl who finds out she has dyslexia. She wants to feel normal and to help other people who have dyslexia."  By Josh, aged 11


Indigo solves the pzulze is a book splashed with vibrant hues, charming watercolour illustrations and the unfolding personal story of Indigo. Without any fuss, ten-year old Indigo describes a bit about herself. She loves acting, netball, horse riding, swimming, playing guitar and spending time with her family. The illustrations depict an energetic and creative girl and so it is interesting to read that although Indigo loves hearing stories she has trouble at school learning to read.

The book’s slightly higgledy-piggledy font matches reversed and jumbled letters of posters on the classroom walls, Indigo doesn’t know why letters jump out at her. Readers understand why reading is difficult for Indigo.  Life for Indigo at school was lonely and girls in her class taunted her. Illustrator Sophie Norsa has drawn these faceless girls in grey and as bystanders. Indigo becomes secretive, hiding her feelings and sitting by herself in the playground at lunchtime. Her sadness is expressed at home when she can’t stop crying.    Her mum says we’ll work this out together.

Here is a turning point. Indigo’s mum walks with her to school accompanied by a whole chorus of birds. A revelation is about to take place! Indigo has some tests and finds that her IQ shows she is clever but she has dyslexia. Indigo and her mum are relieved and now something can be done to help her read letters, numbers and words.

Primary school children and their parents reading Indigo solves the pzulze will learn about dyslexia. Many will relate to Indigo’s personal experience because they have had similar feelings of being isolated and bullied.

A note for parents and teachers at the beginning of the book speaks of the prevalence of dyslexia for children and particularly for girls. The difference between boys and girls behaviour is explained. Girls may try to cover up their reading difficulties which go unnoticed. Many parents may not realise their daughters are struggling and are not getting the help they need.

Indigo solves the pzulze is a book which promotes early support and assistance for children to improve literacy. This has far-reaching implications for people’s lives. Indigo, her mum and Dr Catriona Wallace want to make a difference so they launched the Indigo Express Fund. Purchasing this book will help the fundraising initiative.

Aboriginal and Torres Strait Islander children can have trouble with reading and writing too. Indigo Express Fund works with the National Centre of Indigenous Excellence, MultiLit and the Australian Literacy and Numeracy Foundation. Find more about initiatives to improve children’s literacy through resource links at the back of the book.

Jillian Rattray

AWCH librarian

http://Library.awch.org.au

July 2015