Parents have Requested
I have been asked by a few Parents to make a list of book’s that might help them understand their Child’s Conditions, so I have been asking you the Parents for your help, the list below is what you the Parents have sent me.
I am told these helped.
No Commission is paid to this site to advertise these books.
In THE MARATHON, Sheeran courageously reveals the innermost thoughts and fears of parents struggling with experiences far beyond their control. Her true story uncovers the heart and soul behind one of the world’s most historic races while beautifully demonstrating the power of inner strength, endurance, and human connection. Honest, humorous and raw, the emotions ring true from the start all the way through to an ending no one will predict. Of broad appeal to parents, athletes, medical professionals, and families in search of healing.
A story about a child with EA/TEF (Esophageal Atresia/ Tracheoesophageal Fistula)
About the author:
Ami Hays’s first daughter, Abigail, was born in 2006 with Type C TEF, several internal defects, and a genetic disorder. What should have been a milestone, Abigail learning to eat, was a difficult challenge no one around her could relate to, including herself. As Abigail began to learn to talk she knew she had eating restrictions and needed to be safe, but it was difficult for Ami to find the words to explain to her at the young age “who she was” inside. So she wrote a book.
An Ea-Tef Story
Inside and Out Paperback – Written in many languages
Vanessa Munsch, an Ea/Tef mom, created this book to empower children, educate the public about the condition and offer ways to help. The book is designed to serve as a conversation starter and enable kids to better explain what Ea/Tef means to them specifically. All Proceeds Go To Charity To Help Ea/Tef Families. Best suited for school aged children. On the link below you can see what is inside this book.
I am a TOF kid
This book has been designed to help the non TOF children of the world know and accept the TOF child. With bright colourful drawings and text that is suitable for young children, this book helps kids learn and understand such a complex condition. Oesophageal Atresia (OA) and Tracheo-Oesophageal Fistula (TOF)
A New Book Writon by
Adult Tef + V.A.T.E.R
a blister of stars paperback – 2016
by Jason Irwin (Author)
Jason Irwin was born with a litany of birth defects. A Blister of Stars is Irwin’s interrogation of his own biography. His poems reveal the terror felt by a child confused about what is happening to his body; the endless surgeries and difficult recoveries, the strain it all puts on his parents both emotionally and financially. Irwin’s luminous, reflective poems strive for solace in the face of horror, hold fast to faith while staring into the void. Jason Irwin is the author of Watering the Dead (Pavement Saw Press, 2008), winner of the Transcontinental Poetry Award, and the chapbooks Where You Are (Night Ballet Press, 2014), & Some Days It’s A Love Story (Slipstream Press, 2005). He has also had work published in Poetry East, Sycamore Review, Confrontation, and Poetry Ireland Review, among others. He grew up in Dunkirk, NY, and now lives in Pittsburgh.
Imperforate anus / anorectal malformation
A Secret Life (2017)
A Secret Life is a triumph, Greg. I found it a compelling but also an uplifting read. Compelling because of the confronting nature of your story. Your courage to explain in plain language how you lived your life – warts and all – made it hard for me to put the book down. It’s also an inspirational story because IA stopped being a shameful secret and became your reason for being. Congratulations. I’m lost in admiration”
Greg Ryan was born 53 years ago. By rights, he would have died within the first few days as he had been born without an anal opening. Fortunately for his family, he was born in Melbourne Australia where the Royal Children’s Hospital was located and due to the incredible skills of their surgeons, they could perform marvelous life-saving surgery which gave him a chance of life.
But he and his family could never have prepared for the physical and psychological anxiety that was to be his life’s companion. But there was hope, and Greg tells that story candidly and sensitively in his autobiography “A Secret Life – Surviving a Rare Congenital Condition” which is available through the links on the homepage.
“Well, I’ve read this book cover to cover this afternoon…I couldn’t put it down. It’s confronting.. painful.. sad.. educational.. interesting.. uplifting.. challenging. REAL. But most importantly Greg it exudes strength page after page an enormous amount of strength. So proud of you for putting yourself out there. It’s an incredible journey…THANKYOU for sharing!” Depending on the severity of the condition, surgeries can be done within the first few days or weeks of a baby’s life or can be delayed for several months if necessary. The surgical procedures regularly performed for the treatment Imperforate Anus/Anorectal Malformation and cloacal malformation are as follows: To know more click on the link below. Buy the book to if you can.
My Family and T.O.F
A book designed to help families cope with medical conditions in children, such as tracheo oesophageal fistula.
Looking back,the years seem to have passed in a blur of chest infections, food blockages and nights of coughing rather than sleeping. At times I became so focused on Lois’s health and diet that it was difficult to meet the needs of her older sister. When our daughter Lois was born with trachea oesophageal fistula 10 years ago, my husband and I were in complete shock. Like most mothers, I had visualized us as a happy, relaxed family in the days following her birth. My illusions were shattered by reality of surgery, intensive care and hospital tests.
Strength to Care
Reflections for Parents of Children with Complex Medical and Special Needs
Kindle Edition $4.49
When our third child Matthew was born with a rare genetic disorder it only changed what was important in life…that is, everything is a gift and it is up to us how we respond to what is presented to us in life. After overcoming the adjustments of life with a special needs child, we decided we were not done with having children. God has chosen to bless us with another child with the same genetic disorder even though it is almost statistically impossible. Isaac is now a part of our continuing story of faith, perseverance and joy. Strength to Care – Reflections for Parents of Children with Complex Medical and Special Needs is a collection of stories, or lessons, that all share a common theme of a hospital stay, surgery, complication or just plain old life is really hard right now.
Please note to that Kevin who wrote this has a live blog running on this website to and I have attached it to the FREE app found on site to.
This collection of articles describes the current medical and biological knowledge related to VACTERL/VATER association. VACTERL association is a fascinating condition involving malformations that can affect the skeletal, gastrointestinal (and genitourinary), cardiac, pulmonary, and renal systems. The disorder is also related to many other clinically and biologically related conditions. This publication presents cutting-edge summaries and research describing diverse aspects of these conditions, including the latest knowledge related to clinical aspects of disease manifestations and pathogenesis, embryology and developmental biology, key implicated signaling pathways, animal models of disease pathogenesis, techniques of molecular discovery related to the causes of human disease, and important considerations involving the differential diagnosis. This compendium should serve as a touchstone for future clinical and research endeavors as the growing body of medical research continues to unravel the mysteries of VACTERL association. This collection is anticipated to be valuable to a diverse group of clinicians and researchers.
First, by increasing the understanding of aspects of disease etiology and manifestations, the articles may help clinicians who encounter affected patients and families. Second, descriptions of the state-of-the art scientific knowledge may provide biological insight into current models of disease pathogenesis and inspire novel avenues of research.
Why I Am Me
Why I Am Me” is a story about a boy called Sam who has CHARGE Syndrome and his friend Jess. As the story progresses Jess learns about CHARGE Syndrome and the challenges Sam faces on a day-to-day basis. Written by Carry Ward and Marie Patterson with illustrations by Penny Levett, the idea for this book was sparked by questions asked by a young person with CHARGE. As a result the book is written from a unique perspective. The story is supported by medical information, diagrams and photographs of children and young persons with CHARGE in New Zealand and Australia.
Those who are born with the CHARGE Syndrome find enormous strength from their family and friends, teachers and professionals who work with them to overcome and cope with the daily struggles of being affected by the condition.“I laughed and cried both times I read this book. A great resource that will help everyone understand Charge Syndrome”. Teacher of children with hearing and vision disabilities.
Esophageal and Gastric Disorders in Infancy and Childhood 2016
Esophageal anomalies and disorders in infancy and childhood include a wide spectrum of different diseases. These range from emergencies immediately after birth such as esophageal atresia (EA), necessitating an experienced team of neonatologists and pediatric surgeons, up to gastro-esophageal reflux disease in elder children, necessitating the pediatric gastroenterologist and visceral surgeon. In the last few years some fascinating pediatric surgical techniques have evolved, such as the thoracoscopic correction of EA or the FOKER technique for elongation in cases of long-gap, EA. Prof. Foker has developed this special traction technique and is the world’s leading expert in long-gap EA.
The Little Angel With Different Wings
Born Different To Make A Difference!
The Little Angel With Different Wings is a Children’s early reader for ages 1- 8 years. This book focuses on people with special needs and how God has a plan for all of our lives. The little angel in this book has special needs. It is not as easy for her to fly as it for other angels. God has a great plan for her life as he does for each and every one of us. We are all different, uniquely, and wonderfully made for God’s great purpose. This is the perfect book for a young child with special needs, or to help children understand others with special needs. “You were born different to make a difference.”
This book is dedicated to my precious little granddaughter Jacie. She was born with VACTERL Association.
My prayer is that this book may help to raise awareness of VACTERL Association.
VACTERL stands for vertebral defects, anal atresia, cardiac defects,
trachea-esophageal fistula, renal anomalies, and limb abnormalities. Babies that are diagnosed with VACTERL association typically have at least three of these characteristic features. VACTERL is called an association rather than a syndrome because the exact genetic cause is unknown.
Down with Acid
FREE printed copies will be sent to anyone who asks but we invite a minimum donation of £6.50 per book including UK postage.
Thanks to a grant from Southampton City Council England, this book is now available as an A4 sized paperback and, having an ISBN, will be available to libraries and copies may be given to newly-diagnosed patients. Over 100 A4 pages with full color illustrations.
Tic Disorders: A Guide for Parents and Professionals
This is the essential one-stop guide for parents of children and young people with tic disorders and the professionals who work with them. Such as ADHD, anxiety, OCD, autism, self-esteem issues and behavioural difficulties This is written from research and People using their own clinical experience, the authors provide up-to-date information on tic disorders and review the psychological, medical and alternative methods of managing symptoms. Written in clear, accessible language and with practical advice on how to support children with tics at home and in school, the book also includes essential information on the common co-occurring conditions and difficulties, a very worth reading book, and supported and found on the website of the world famous Great Ormond Street Hospital in London, when I posted this here.
A Positive Approach to Autism
Stella Waterhouse investigates how people with autism perceive the world, and discusses the symptoms, behaviors and possible causes of the condition.
She emphasizes the importance of taking into account the views of people with autism and their families. This is a practical and sympathetic book, of interest to professionals and non-professionals alike.
‘This is indeed a very positive book by Stella Waterhouse, who has spent many years teaching children with learning disabilities and emotional problems.The argument of the book is that children with autism are not mentally handicapped, but rather normal children whose problems leave them isolated and unable to express or understand even their own feelings due to a special response to anxiety. An interesting review for parents or professionals working with autism. International Journal of Adolescent Medicine & Health.