At some point in your journey, you will probably get a diagnosis for your child. Most parents we’ve talked to agree that the moment they heard a diagnosis for their child was an unforgettable one. They might think about that conversation with the doctor over and over again or wish they could block it from their minds completely.
Some parents told us they had helpful conversations with their health care providers. Others wish that the news had been delivered in a gentler way. There are standards for best practices on giving a diagnosis, and we talk about them on our diagnosis for physicians page.
Here are some stories that show the range of ways that people get a diagnosis for their child. (Names have been changed for privacy.) Some of these illustrate best practices, some do not, and some are a mixture. This page also shows the different ways that parents reacted in the moment and how they managed to move forward with their child’s care. We hope that these stories help you know you’re not alone, no matter your experience.
“Our daughter celebrated her 1st birthday having never rolled over, crawled, cruised, or walked. She had no balance to stay up when put into a sitting position. Her pediatrician, and our friends and family (except for my mother-in-law, who watched babies often) kept saying, ‘Don’t worry - preemies catch up.’ But being a premature baby wasn’t enough to explain these delays.
“One Friday after her 1st birthday, I finally visited a neurologist. He carefully examined her and then knelt on the floor in front of me as he told me that she had cerebral palsy (a condition I barely knew anything about). I think he was afraid I would drop her off my lap or faint or something. He said that if she could sit up by age 2, she would eventually walk; if not, she would never walk. He sounded pretty doubtful about the sitting by age 2.
“It was good that he knelt down and great that he gave me answers, but it was still such a shock to hear this diagnosis. When we returned home, I put my baby down for a nap and literally curled into the fetal position, covers over my head, until my husband came home.
“My neighbor across the street was an early childhood diagnostician (someone who often delivers diagnoses) and the mother of a child with disabilities. She was quietly waiting for me to learn that my daughter had a disability. She brought us dinner and offered to be there for all my questions. She helped me start to move forward.
Eventually, I met many other supportive parents and therapists, and paid it forward. Our daughter did not sit by age 2 (or age 22), but we are all at peace about it. She recently earned a master’s degree, is active in local arts, dance, and theater organizations, and is starting a career where she can help others as a chaplain and counselor.”
Sherri learned that her daughter had Down syndrome while in the hospital recovering from giving birth. She suspected something might be different and asked her doctor if the baby might have Down syndrome.
The doctor answered, “Yes, I think she might.”
Sherri felt paralyzed. She says, “My world changed in that moment. I felt like I was Dorothy and a tornado had picked up my house and placed it in a completely different world. To this day, it feels like my life is broken into life before and after that statement.”
Next, the doctor ordered some tests, and then went off duty for the weekend. Sherri sat in fear in her hospital room waiting for the results of the test that would give her an answer. The nurse on duty went to the library to look for brochures to help her. She found one made for doctors that talked about all the things a child with Down syndrome might not ever be able to do. It even had a photo of a baby with Down syndrome who had not survived.
Sherri was devastated and not sure how to move forward. But over the weeks and months to come, she found more hope and worked with her daughter to build skills.
Sherri learned a lot from her experience and used it to help others. She now trains doctors and medical professionals about the best practices for delivering a diagnosis of Down syndrome. She says, “With early intervention there’s so much more children can do. If you read to your child early, it helps develop literacy. If you help them with OT (occupational therapy), they can learn to walk. Parents need to know these things right away.”
Lynette’s son had strong stomach problems, so she took him to his pediatrician for help. The doctor took one look at him and arranged for him to see a gastroenterologist (GI) who specializes in digestion. The GI doctor got him in for a test within the week.
In the recovery room after the test, the GI doctor told Lynette that her son had Crohn’s disease and needed treatment as soon as possible. She then told Lynette that she’d already scheduled an appointment in her office in 2 days to go over options. The doctor said that Lynette’s son needed to be there and be part of the conversation.
Lynette remembers going to that appointment with her son and that the exam room at the office had a photo of a sailboat and other boat and water decorations. The doctor used that idea of steering boats and sailing to talk to Lynette’s son about managing his Crohn’s disease. She pulled up photos from his test, explained clearly what Crohn’s did to his body, and told him that he would have to manage this through his life. She also told him how he could steer his way through it.
She also clearly explained all the plusses and minuses of different treatment options so he could understand them. Then she worked with him and his mother to make a choice. They left feeling hopeful about managing his Crohn’s disease.
As you can see, there are many ways to get a diagnosis. Every one of these parents needed time to absorb what they heard. After that, each of them found a way to move forward to help their child (and often to help themselves at the same time).
If you are just hearing a diagnosis for your child for the first time, you might need a chance to let it sink in like they did. But when you are ready, please see our My Child Has a Diagnosis. Where Do I Start? page for ideas to help you and your family take the next steps.