Facing the Unknown: A Parent's Journey Through Their Child's Unexpected Diagnosis

Planning for a new baby brings joy and excitement but also fear and anxiety of the unknown.

I met my younger self today. She was pushing a stroller with our first son and was 21 weeks pregnant with our second. She looked exhausted and had been told at her 20 week sonogram a few days ago that this baby would have a limb difference. She said she was being encouraged to see various specialists and do various tests to find out what syndrome or condition he has. I could see in her eyes that she was scared–of what his life would be like, the limitations and challenges he will face, and what lies ahead for our family. She said she was afraid of how she would split her attention between our first son and a son who needs extra attention and has medical needs that are out of the ordinary. She told me she had so many worries, and anxiety was keeping her awake at night. She never saw this coming (I mean, how could she?) and she felt a complete loss of control. She said that she thought that the only surprise that awaited her at that sonogram was the baby’s gender, but now her life feels full of uncertainty and questions about the future. She told me she doesn’t know if she can handle this. She didn't expect to be faced with a prenatal diagnosis for her baby.

I held her hand and told her it’s ok to be afraid and we’re not going through this alone. This baby will be different and there will be hard moments but hard doesn’t mean impossible to handle. He will teach us how to be brave and help us find new strength, because we will grow and evolve to be the mom and advocate he needs. We will get comfortable being bold and saying no to doctors who see him as an interesting case to study and remind them of his humanity. Being his mom will teach us that differences aren’t bad, and this difference is just one thing about him. There is so much more to him than this diagnosis. 

I tell her that although it will be tempting, we don’t have to treat him like a glass boy because he will actually prove himself to be the most fearless and daring kid we know. I acknowledge that the world can be mean and he will come in contact with people who overly focus on his physical difference, but we will make sure he doesn’t feel less than and he knows his worth and we will instill resilience by the way we talk to him about his difference and we will build him up so people’s looks and words don’t even penetrate him. 

And I tell her that he will have life changing surgery when he’s older and after she does the work in therapy to cope with her own anxiety about it and prepare for his difficult recovery, as we are counting down the hours to surgery, a painful and unexpected loss will happen in our family that no one saw coming and she will again feel a complete loss of control. We will find ourselves in a place in which we will have to be stronger than we thought we could be and hold it together as the family grapples with grief. We will look back on that week of loss, surgery, pain and uncertainty that was harder than we could have imagined or prepared for in therapy. But we’ve spent years being stronger than she can now imagine and we have tools and supports in place to get through it. I told her that we are going to be ok, and this baby will defy the limitations the doctors are telling her about and will blow her worries out of the water with his adventurous, free spirit. He will grow up to be a kind, bright, creative kid with a huge heart and special sensitivity to others' needs and feelings because of the adversity he has to overcome.

I tell her we are going to get through this. We aren’t alone.  We are going to be ok.

If you or someone you know is navigating a prenatal diagnosis, we provide individual therapy for Unexpected Outcomes of Pregnancy as well as a New Moms Group. For more information, contact us.