According to a story from triblive.com, Roger Ziegler has self-published a book about his family’s experience with his son Noah. Noah is now a healthy 24-year-old, but there were multiple times in his life where his future was called into question. The book is titled Patchwork Kid: A Boy’s Transplant Journey of Hope Through the Midst of Tragedy. Roger is hoping that at least part of the proceeds made from the book will go towards starting a nonprofit organization.
Gastroschisis is a rare birth defect in which an infant is born with part of the intestines outside of the body. Occasionally, other organs, such as the stomach and liver, may also be exposed. Generally, the organs are exposed through a small opening next to the belly button.
Gastroschisis should not be confused with another similar defect called omphalocele, in which the intestines are also outside of the body but are covered by membrane. The cause of the defect is unknown, but risk factors include mothers that smoke, consume alcohol, or are under 20 years of age. Often, the defect is identified before the baby is born. Typically, the organs are placed back into the body, a process that may require multiple surgeries to complete. To learn more about gastroschisis, click here.
Roger hopes that the book can serve as a source of inspiration and understanding for other families that have had to deal with complex health problems and rare diseases in their children. In Noah’s case, his gastroschisis was surgically repaired, and until he was nine years old he was living an active and vibrant childhood. Then, rather suddenly, the boy began to experience flu-like symptoms that began to worsen rapidly. Before long, he was rushed to the hospital.
In an emergency operation, Noah’s small and large intestines were both completely removed. As a result, he had to receive nutrients intravenously. Unfortunately, this move was only a delaying tactic, and began to cause liver problems. Two years later, the boy was fortunate enough to receive a transplant of his liver, pancreas, and small intestines. The fact that he was able to find matches for all three organs was a miracle; if he had had to wait much longer, he would have probably died.
Ultimately, Roger envisions the book as a source of hope for families that struggling with similar problems.
You can check out the book on Amazon here.