Can you describe your emotions when you first heard your child’s trisomy diagnosis? What thoughts or fears came to mind?

I was heartbroken. As a sonographer, I learned in school that trisomy 13 was fatal and my heart shattered thinking that we wouldn’t get any significant time with our son. It wasn’t until I found support through SOFT and trisomy Facebook groups that I realized there was hope for our baby.

What were your feelings and experiences when your child was born? How did that day compare to what you expected?

We were filled with so much love for our son and felt relief that he was breathing on his own, contrary to what doctors told us to expect. Even though we had requested interventions, after Teddy was born we were told that he wouldn’t be admitted to the NICU for care because his condition was “fatal.” We knew he needed a simple cardiac cath for a PDA stent or else he would have passed away within a few days. So we had to call the patient advocates and fought for full interventions and care. After getting the proper care and the PDA stent, he did so well and came home at just 4 weeks old. He spent most of his 11 months comfortably at home!

How has your perspective on the trisomy journey evolved over time? What have been the most challenging and rewarding aspects?

I went from believing trisomy was actually fatal, to realizing how many children thrive for a long length of time when given proper treatment. The hardest thing was dealing with medical professionals who thought less of our son because of his condition and those who didn’t want to treat him. We also struggled daily with knowing our time with our son was limited.

What specific people, resources, or moments helped you the most in navigating life as a trisomy parent?

The SOFT website was incredibly helpful for us along with the SOFT and the “Trisomy 13 life support-living with Patau syndrome” Facebook groups. My parents were incredibly supportive and helpful from day one and our family was such a big help throughout our journey. Our church and pastor were such a blessing through this journey as well.

What would you say to a parent who has just received a trisomy diagnosis for their child? What do you wish you had known at the start of your journey?

Fight for your child. If there is anything that can be done for them, do it and don’t take “no” for an answer. Do your own research, because many doctors won’t tell you all the facts. This is incredibly difficult, but every moment you get with your child will be so worth it. Soak up every second, every day!