Congratulations on your pregnancy or new baby!
Right now, your baby is a tiny bundle of possibilities. Will they be a dreamer or a deep thinker? What color will their eyes be? What will their laugh sound like? There’s so much you can’t know yet – learning all about your baby is ahead of you.
Your whole world changes when you hear the words, “We believe something is wrong.” As one parent put it, “When I first heard that the doctor thought my infant daughter might have a genetic condition, I felt like I was Dorothy in the Wizard of Oz and a tornado had picked me up and placed me in a completely different world.”
You might find yourself in a hurricane of feelings -- disbelief, grief, determination, guilt, numbness, and others. Sometimes it takes all of your energy just to keep breathing. No matter what, you’re not alone. There is a whole community ready to support you.
On this page, we want to give you some strategies to help you move from the next few moments to the next few days and weeks. There are actions you can take to help you and your baby have the best possible life in the weeks, months, and years to come.
One important step you can take is to talk to other parents who have children with disabilities or special health care needs similar to your baby’s diagnosis and reach out to organizations that support people with that disability or special health care need. These parents and professionals can help you picture what might be in store for you and your baby – and where you can go to get help near you.
Here are some other ways to find support:
Now that you know there’s a community around your new family, take a deep breath and decide on a first step. When you are ready to reach out, you’ll find a lot of help out there waiting.
You might need time before you’re ready to jump in and learn everything about your baby’s diagnosis. One parent said, “When I heard my son had Cerebral Palsy, it took me a full 24 hours to get back to him as a mom.” Some parents say they need a little longer than that.
Eventually you’ll be ready. You can start to feel more in control of things by learning about the diagnosis – and then get back to enjoying this precious time with your baby.
Here are some important questions you can ask or think about:
Some parents suggest that you do your best to just focus on the first year or 2 of your child’s life for now. No new parent needs to worry about a long list of possible limitations that might not even be a reality for their child.
Parents have also told us to be careful about the Internet – there’s a lot of wrong information out there. Try to stick to trusted and well-researched websites like ours and others recommended by doctors or organizations that know your child’s disability or special health care needs.
Here are a few organizations that specialize in certain disabilities or special health care needs that are usually diagnosed during pregnancy or at birth. You can read about your baby’s diagnosis, find treatment centers, and connect with parent support groups.