Product Description
Now thoroughly revised and updated, Children with Spina Bifida--the complete and highly acclaimed guide for parents and professionals--is available in a new edition. Children with this congenital condition, which occurs in approximately 1 out of 1,000 births, can have complex medical and therapeutic needs.Every aspect of their care and development from birth to age six is covered in this comprehensive resource.

Chapters focus on specific issues, such as:
Causes of spina bifida;

Prenatal diagnosis;

Neurosurgery;

Urological & bowel management;

Orthopedic concerns;

Physical therapy;

Common medical problems;

Development;

Day-to-day parenting issues;

Education & accommodations;

A child s emotional health;

Legal rights & hurdles;

Perspectives from adolescents & adults with spina bifida.

New to this edition is the latest information on research and medical advancements on spina bifida, including prenatal testing and surgery; new treatments & medications; the link between low folic acid levels and spina bifida; new rating systems for assessing mobility; an overview of orthotics & wheelchair options; changes to federal education law (IDEA); and much more. It also features a resource guide, glossary of terms, and dozens of delightful photographs of children with spina bifida. ... Read more

Customer Reviews (8)

Easy to Understand
I ordered another book when I first found out about my daughter.I found it tailored toward the medical profession and definately hard to understand.Then I found this book.It was much easier to read; it spoke to me in words I could understand as opposed to just medical terminalogy.I refer to it often.It seems to have a little bit of information about everything that my daughter either has, or will have, to deal with during her life.

Best resource I've found for SB
I've done a lot of Internet searches for information about spina bifida. This book is the best overall source I've found. I highly recommend this book for parents and caregivers of children with spina bifida. My daughter is now two years old, and I still refer to this resource often.

Excellent Resource!
I purchased this book when my daughter was prenatally diagnosed with Spina Bifida.Since she's been born I have purchased more copies for family members.This book is an excellent resource for parents and loved ones.It teaches about the condition and related concerns in an easy to understand manner.This is by far the best book I have found on Spina Bifida.I would HIGHLY recommend this book to anyone who is expecting/has a child with Spina Bifida.I would also recommend it for family members and caregivers of children with Spina Bifida.

A very comprehensive book
This is one of the two books we ordered when we found out that our baby would be born with sb.We have read lots of books since then and still think this is the best.It is very comprehensive, presents the information well, and I have referred to it often over the past 8 months.We ended up purchasing several copies to give to our family members so they would understand what is going on with our son.

Excellent book on spina bifida
This book is a wonderful book for anyone who knows of someone dealing with a child or teenager with spina bifida.Its very organized, informative, and even has several photos of kids with spina bifida.I highly recommend it! ... Read more

Product Description
Within an hour after she was born, Christal underwent major surgery. They had to connect all the nerves in the spinal column to their various organs and muscles. It was one of many operations this little girl would face. She learned to walk at the age of twelve months with the aid of a child-sized walker. Throughout the book you are witness to her determination, such as learning how to roller skate and even to become a cheerleader. The book is a testimony to the care of her parents and those who helped her to learn to live with her illness. ... Read more

Customer Reviews (4)

Christal: coping with Spina Bifida
This is one of the best, and only book, I know of, which gives a positive outcome to a child born with a serious birth defect. I thoroughly enjoyed this book.

English 101
I have a child with spina bifida so I can certainly comiserate with the plight of Karen Snyder Travis and her family.However, what I cannot do is tolerate the unbelievably poor grammar used in this book.Many misspelled words are peppered throughout this quick read -- I was too distracted by all of these errors to focus on the story.

And, about the story -- it is entirely too "matter of fact."Ms. Travis tells us what happens to Christal as if she were relaying information to a physician -- it's not storytelling.Storytelling is an art, a true talent that not many people posess.Unfortunately, Ms. Travis was not blessed with it.

As eager as I am to get my hands on the too few books out there about families living with spina bifida, this is the worst one of I've had the misfortune of reading.I wish I hadn't even bothered.

Bottom line:don't waste your time.

Not a great book
This book is written from the heart, but it is very poorly written. It may be helpful for families and people working with children who have spina bifida.

A real pleasure reading.
I must admit I know nothing about Spina Bifida and the affect it has on someone and the family. I will also admit that I haven't spent any real time reading or learning about it either. This book is a keen insight into the world of this malady and the ways in which people handle the event.

Right from the beginning of the book you are taken to Christal's beginnings and with every page you read you are treated to a story about more than just coping, you are shown true courage.

The book works through each aspect of the life of one person and how it affects those around her. The author weaves an interesting story-line to give you are real sense of what life is like.

Overall a very well written book and real pleasure reading. ... Read more

Product Description
The most common complex birth defect, spina bifida affects approximately one out of every 1,000 children born in the United States. In this comprehensive guide, Dr. Adrian Sandler offers a wealth of useful information on the medical, developmental, and psychological aspects of this condition. Accurate, accessible, and up-to-date, Living with Spina Bifida is written especially for families and professionals who care for children, adolescents, and adults with spina bifida. This edition contains a new preface by the author, addressing recent developments in spina bifida research and treatment, as well as an updated list of spina bifida associations. ... Read more

Customer Reviews (3)

Useful, but maybe a little bit dated
While this book has lots of good and useful information, it's also obvious that the book was originally written ten years ago; some of the information, based on my recent experience, is dated.If you need resources on spina bifida, there aren't many, and I'd recommend picking this one up, but doublecheck any of the information in it against current practice before you act based upon it.The new introduction is nice, but the book could stand to be updated throughout.

Living with Spina Bifida - A Guide for Families and Professionals
This is an awesome book.I only wish that I had found this book before I had my baby.It would have helped me tremendously.I will use this book for years to come.

A great starting point for the parent of a child with SB!
The book goes over specific procedures that are common diagnostic tests for a child with spina bifida and it also is great source of information regarding the physical differences a child with SB may have.It is a"must read" if you love someone with SB!Neurology, urology,orthopaedics and pediatrics are all covered somewhat.Great reference too! ... Read more

Product Description
Larry Appelmann talks about his experiences, including the past surgeries he has had. He also mentions his family and how important they are to him. Living with Spina Bifida: Speaking Out About My Disability contains 13 chapters, including a prologue and a bibliography, which you normally would not see in an autobiography but he included one because there were a lot of things related to his disability that he wanted to include in his autobiography. ... Read more

Customer Reviews (2)

Great insight on a terrible disease.
Unique insight into a terrible disease.There is a lot to be gained, other than the words written.

Spina Bifida
As I'd mentioned in my other reviews about people in these books with disabilities, I find it very interesting and rewarding to read about families who have a child with a disability and how they work with that child to help him or her become a real asset to others in spite of their disability.This person actually wrote about himself and has Spina Bifida!I admire people who can do that!It just goes to show that people who are disabled CAN prove that they work through their disability, even when the going gets rough!I've been there myself and I don't have Spina Bifida; I do have a learning disability!But it has helped me to see how people with these more serious disorders CAN be helped and learn to help themselves through these challenges!Dawn ... Read more

Product Description
If you're a teenager with spina bifida, check this book out!It can give you greater independence.Learn from savvy medical professionals with a sense of humor.They offer practical, no-nonsense advice (no b.s.) on managing your daily and long-term helathcare, tips on sex and relationships, and smart strategies for success at school and on the job, now and down the road. ... Read more

Customer Reviews (2)

Great book
This is a great book for teens that have spina bifida or their sibs. It explains things that can be confusing.

A great introduction to spina bifida.
I recommend this book not only for teens, but parents, becauseit explains spina bifida in very easy to understand terms, and can help parents of younger kids think about things they can do now to help their children grow into independent adults. ... Read more

Product Description
This is a "must have" reference book for patients, parents, caregivers, and libraries with medical collections. This sourcebook is organized into three parts. Part I explores basic techniques to researching spina bifida (e.g. finding guidelines on diagnosis, treatments, and prognosis), followed by a number of topics, including information on how to get in touch with organizations, associations, or other patient networks dedicated to spina bifida. It also gives you sources of information that can help you find a doctor in your local area specializing in treating spina bifida. Collectively, the material presented in Part I is a complete primer on basic research topics for patients with spina bifida. Part II moves on to advanced research dedicated to spina bifida. Part II is intended for those willing to invest many hours of hard work and study. It is here that we direct you to the latest scientific and applied research on spina bifida. When possible, contact names, links via the Internet, and summaries are provided. In general, every attempt is made to recommend "free-to-use" options. Part III provides appendices of useful background reading for all patients with spina bifida or related disorders. The appendices are dedicated to more pragmatic issues faced by many patients with spina bifida. Accessing materials via medical libraries may be the only option for some readers, so a guide is provided for finding local medical libraries which are open to the public. Part III, therefore, focuses on advice that goes beyond the biological and scientific issues facing patients with spina bifida. ... Read more

Product Description

The evolution of technology has made new surgical techniques available for the treatment of diseases associated with the spina bifida malformation, and this is especially true in hydrocephalus and fetal surgery. The progress in this last field and in prenatal diagnosis have raised the significant problem of the effectiveness and usefulness of in utero surgical treatment of the malformation, that are extensively discussed in this volume. Also the clinical situations that can be seen in adolescents or young adults with spina bifida, including sexuality and pregnancy, are highlighted. Aim of this book is to promote a multidisciplinary approach to spina bifida, providing the three main specialists’ categories involved - neurosurgeons, orthopaedic surgeons, and urologists - with an updated overview of surgical approaches and with a concise reference that explains the main clinical problems to be faced in everyday clinical practice.

Product Description
Comprehensive Management of Spina Bifida focuses on the treatment and management of patients with congenital defects of spina bifida cystica. It emphasizes the importance of a multidisciplinary approach for children afflicted with this disease, as well as the role of the pediatrician as a primary care giver. Topics discussed include management of the newborn, the symptomatic nature of the Arnold-Chiari malformation, management of legs and feet, management of the kyphos, methodology and institution of intermittent catheterization, the potential need for surgery of the bladder and ureters, and psychosocial aspects. This book is invaluable to neurosurgeons, orthopedists, urologists, pediatricians, nurses, social service workers, and psychologists involved in the day-to-day care of children afflicted with spina bifida cystica. It will also be beneficial as a reference resource for patients and their families to educate themselves and use as a starting point for discussions with their care givers. ... Read more

Customer Reviews (1)

Wonderful and technical book
This is a wonderfully detailed and explicit book about the comprehensive management of Spina Bifida. The photographs are excellent and Dr. Rekatecovers most areas of spina bifida management very well. Although I believethis book may have been intended for the medical professional it is anexcellent guide for parents as well. However, the topics are discussed ingreat depth and detail that I would hesitate to recommend it to brand newparents. ... Read more

Product Description
Based on a symposium sponsored by the Shriners Hospitals for Children and produced by the AAOS and POSNA, this new book provides a comprehensive model of patient care. Discover new approaches for surgical and non-surgical treatment, strategies for prevention, and significant changes and advances in the medical management of spina bifida patients that can improve their quality of life and life expectancy. The authors include guidelines on controversial issues including folic acid supplementation, unstable hips, tethered cord and more. Caring for the Child With Spina Bifida also delivers helpful explanations of the potential impact of spina bifida on children's and adolescents' physical and mental development. ... Read more

Product Description
December 11, 1984, we welcomed a new life into the world when Cody, our bundle of love, was born. But the smiles quickly turned to tears when we received the shocking news of his birth defect: spina bifida. Our struggle against this disease had begun. There were times when the odds were against Cody. Many times we feared he would not live. But it seemed that Cody inherited strength from his grandfathers, who were both remarkable men. This is why we followed the important advice given to us by a very special lady, who told us to "Live one day at a time." ... Read more

Customer Reviews (2)

In My Opinion...
I am the mother of a son born with a type of spina bifida known as tether cord dysfunction, Chiari Malformation II and mild CP.
My son also developed a CSF leak causing hydrocephalus. So when I came upon the title of this book, I was compelled to read it. The fact that I read it cover to cover in three short days is proof that in many ways it touched my heart and drew me into their world. I feel the message was not "poor me" rather I took it as a realistic account of what they had to endure and sometimes there is no way to sugar coat things. In summary I think it was an honest , realistic account of the challenges parent's of chronically ill children must face. I would have liked to know the status of Cody's life now. The book ends when he begins preschool but what came of the rest of his years?

Could have been a great, uplifting story, but...
I am sorry, frankly, that I can't recommend this book. It's nearly 300 pages, Cody was born nearly 21 years ago...and I apologize if I'm spoiling it for some of you, but the story ends when he goes off to preschool! Where are the other 17 1/2 years of this guy's life?? This book was published this year--2005--but reading it, you'd think it was 1988. I really wanted to recommend it to other parents of younger kids with SB and/or hydrocephalus, but I don't think they would learn anything from it because many of their kids are older than Cody was at the end of the book.

I am a mom, born with hydrocephalus (I don't have spina bifida), and I have a sweet son who was diagnosed with autism at 2 1/2 and Chiari Malformation at 5 1/2. I won't claim to have gone through the harrowing experience that the Dicken family endured with Cody through his infancy, but I honestly felt like I was having deja vu episodes. I swear I must have read certain sentences in different points in the book dozens of times! Even the most compassionate reader can see "I cried so hard..." so many times before apathy sets in.

Along the same line, the editing was horrendous. I saw missing letters and words, and yeah, there were many short, choppy sentences that were worded too similarly to others in the book to keep the reader engaged. My heart hurts for this family that they watched their son endure so much, but 300 pages of pity party wears thin very quickly. ... Read more

Product Description
This is an OCR edition without illustrations or index. It may have numerous typos or missing text. However, purchasers can download a free scanned copy of the original rare book from the publisher's website (GeneralBooksClub.com). You can also preview excerpts of the book there. Purchasers are also entitled to a free trial membership in the General Books Club where they can select from more than a million books without charge. Original Published by: James MacLehose in 1877 in 149 pages; Subjects: Spina bifida; Medical / Orthopedics; Medical / Pediatrics; Medical / Genetics; ... Read more