Good to Come From Diagnosis
There's no doubt about it – a Congenital Diaphragmatic Hernia (CDH) diagnosis will change your life forever. It will be scary, emotional, overwhelming, and probably feel like a rollercoaster ride full of intense ups and downs at first. But through it emerges blessings you never expected and strength you never knew you had.
True Friends – Upon diagnosis and during the CDH journey, it will become apparent who your friends are. Some will be there through thick and thin. They will show up, reach out, support you, and brighten your days. However, others may shy away and disappear. You will emerge from the experiences with a strong understanding of who will be there for you during the most challenging days. It will strengthen those true friendships more than you ever imagined!
YOU are a Hero – Parents are often their child's hero, but from a CDH experience, you have the opportunity to become another child's hero. Raising awareness, helping families find quality care, reaching out, and supporting others during their journey can save lives. There is value in your story and, by sharing your story, you allow others to learn from your experiences. Those other children you can inspire will become like family if you want it. The bond between CDH families is unlike any other.
New Perspective – Along with a CDH journey comes an entirely new perspective on life. You will realize how fragile life is and how tomorrow is never a guarantee. You will be reminded daily to focus on the day-to-day wins, the breaths that are taken, the incredible people in your life, and the moments that make it all with it. It will teach you what matters most in life.
Savor the Moments – When you are a parent to a typically developing child, it is easy for milestones and achievements to go unnoticed or under-appreciated. Things such as breathing, eating, and waking up are usually expectations that go unnoticed. But when you watch your child fight for their first breath, wait weeks for the first sip of milk and work hard every week in therapy, you recognize and value every achievement. The first crawl, first step, and first everything else all matter. They are firsts you did not know if you would get to experience – it can provide so much hope for the future.
Expert Advocate – Through this experience, you will come to know your child and their health better than anyone else. You will gain the knowledge needed to become their nurse, therapist, and so many other roles. You will learn when to trust the doctors and medical staff you have hand-selected for your child's care and when to stand up and voice opinions or concerns. You will become their best advocate and make sure they are receiving everything they need. You will learn you are stronger than you ever imagined!
Community – With a CDH diagnosis comes a community of parents ready and willing to provide support. You will find lifelong friends that become like family, a community that has been through what you are going through. They will always have your back in hard times and be there to celebrate the little wins and milestones with you. They will also become your greatest asset when you need advice that only a fellow CDH parent would understand.
Miracles – CDH is a diagnosis that allows you to witness so many miracles and watch your baby defy the odds every day. You will watch someone so little fight so hard, and you will see doctors using their talents to achieve what was deemed impossible. Miracles are an everyday occurrence in the CDH world!
Slowing Down – In many cases, a CDH journey involves taking a leave of absence from work and relocating for quality care. Your day-to-day focus will likely shift inward to the hospital, leaving things such as working, cooking, and cleaning pushed off to the side. You and your baby will probably end up with more quality time together than they would have had if you returned to your regular busy life immediately after delivery.
Almost everyone that has ever ridden the CDH rollercoaster will say it is the hardest thing they have ever done, they would never wish the experience on anyone, but they would not change it for the world. The experience gave them their child and, with it, so many unexpected blessings. From all of these experiences, you will grow as a person. You will come out of it witnessing miracles, making new friends, discovering what matters in life, learning new skills, and gaining the ability to help others save their baby's life.
