“There’s something wrong with your baby’s heart.” Until the day I die, I will never forget those words. For those words marked the beginning of our battle against congenital heart defects (CHD). They came in the middle of my pregnancy as I carried the child I’d wanted all my life. I chose to fight for my child’s life, and this story was born out of that choice. Essentially a field guide for parents and grandparents of children facing CHD, this book chronicles all the details of my son’s journey. Every test, every surgery, every victory that led him to today. Today he is a beautiful, intelligent, normal child. There are also facts on CHD to help you navigate the often murky waters of the medical community. This is the book that I wanted when we discovered my son’s CHD. Through it, may you find the hope and guidance you need to conquer each step of your own CHD journey.
|Publisher:||Jennifer Anne Fleming|
|File size:||3 MB|
About the Author
Jennifer Anne Fleming is a married 40-year-old mother of two sons, one with a major congenital heart defect (CHD), and one with a healthy heart. She currently resides in Severna Park, Maryland. She has a degree in Biology from the University of Maryland and eight years of experience in the field of clinical data management, which has helped her navigate the world of CHD. Despite the challenges Jennifer has faced as the the mother of a child with a life-threatening condition, she maintains her silly sense of humor. She uses her knowledge and humor to share her son's miraculous story.
Most Helpful Customer Reviews
With compassion, honesty, and love, Jennifer tells about her family's struggle, resilience, and above all - Corey's successful surgeries in treating his CHD. My heart will never be the same - thank you for giving this book to us.
How fitting! I rated this book five stars before typing this review, and to Barnes and Noble, five stars means "Excellent!" There isn't a better way to describe how I feel about this book. It is educational and intelligent, without being pretentious. It is witty, but doesn't undermine the serious subject matter. Most of all, it is emotionally honest in all the right places. As Corey's Aunt, I watched his story unfold firsthand. Much of this book was a trip down memory lane for me. But, that doesn't mean I wasn't mesmerized and unable to put this book down. I can still remember the day we found out that Corey had Tricuspid Atresia. I had never heard of it. I felt so sad for my unborn nephew. The most difficult thing in the beginning, was not knowing what to say to my sister- in- law and brother- in- law. They were devastated, confused, and desperately needed advice from others who had been there. This book is the beautifully written account of what Corey and his parents endured, from his diagnosis at 20 weeks gestation, to present day, as he is a gorgeous, healthy 9 year old boy. I recommend this book to any parent, family member, or friend who is trying to understand the world of CHD. Hopefully, it will be helpful to know that there are others who have been there before, and to read the story of one miraculous boy and his fight to become the amazing boy that he is today.
The remarkable thing I took away from this book is Fleming's true courage. She writes freely, without shame, about her anxiety and fear. And, she writes freely about how she and her husband managed thier fear with heartfelt courage. She's a normal person; she's not a super-hero. Yet she performed multiple acts of insane bravery during the course of this story. It made me feel that if she could face this horrible diagnosis and get through it, then maybe so could I. (As clearly, I am not a a super-hero either). Good luck and God Bless.
EXCERPT: “Are you serious? We get to take our baby home? Are you sure? Are you sure we can take care of him? Because, I’m not so sure. It took a whole NICU staff up to this point. And, um, doesn’t everybody realize we’re not doctors? And we’re rookie parents! Rookies! We don’t even know what to do with a healthy kid! This is a disaster.” This paragraph is a great example of what Fleming does so effortlessly. The book reads like a conversation with friend - A smart, educated, sympathetic friend who has already gone through your hell. This is the book you need if you are unfortunately handed the awful diagnosis of CHD. It’s science-y enough to be very educational, but understandable enough for a beginner, with a lot of heart, sympathy and compassion thrown in to help you feel you’re not alone. The appendices are particularly great. All the science was spot on, from my reading. What I really loved was that she included words like "prognosis", "dilation" and "oxygenation". When doctors are throwing around so much jargon, it's so easy to get totally overwhelmed. Medicine can be a real pain in the a** and I'm VERY impressed with Fleming’s ability to balance accuracy and simplicity. The post-Glen chapters are great. They literally had me laughing out loud. It's so important for new parents who are struggling with this diagnosis, to know there is light at the end of the tunnel. This book really helped me visualize this sweet kid having a great life and personality. Also, (spoiler alert!) the sentence: "Great. A fart joke before the kid can even talk" keeps making me giggle all over again. I also loved the chapter about the other heart babies. They were so eye opening. It’s important to remember that Corey’s story is only one story. And there are many, many more. Babies and parents with different outcomes. The book does a good job of helping with perspective. I would highly recommend this book.