When we were told that because Faith likely had Down syndrome, she would be at greater risk for heart issues. They did a fetal echocardiogram at one of our appointments and saw nothing wrong with her heart. That was also the appointment when they discovered she may have hydrocephalus.

I’ve never prayed so hard as I did for this girl. This tiny wonder came out perfectly healthy. No breathing issues, heart perfectly formed, and her brain didn’t have excess fluid like the originally thought. I loved that she didn’t fit into what they thought she was going to be.

This past week we met with a cardiologist for an EKG and to talk about getting an echocardiogram done. We were told she has a heart murmur. Other than that, they weren’t concerned with her hearth health.

I realize this isn’t the norm for babies with DS. There are so many with CHD. So many undergo surgeries early in life. I’m so thankful that isn’t our normal. For so many it is.

Having a child with special needs means you get to visit lots of medical professionals. You get to feel judged by them for your decisions and ideas in parenthood. For us, we get told every single appointment that Faith is too small. This time was no different.

Fortunately for me my friend and DSACO’s executive director, Sarah shared resources for doctors that work with kids like Faith. I made the appointments and we went to get Faith checked out. Turns out the endocrinologist we saw is highly regarded in his field and he has over 30 years experience with children with DS. Mentioning his name made the new doctors stop the “she’s too small” talk.

Faith is small. But in the last year she has grown from 4 pounds to almost 10. This tiny little girl is always doing more than doctors ever figured she would be able to do.

Post by Denisa, written January 27, 2019

 

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