Landry's Story: Planning for a Future for a Child with Down syndrome

by Charlotte Cravins

My name is Charlotte Cravins. I live in Louisiana with my husband, in a blended family with his (and my bonus) daughter Lyric. Last January, we welcomed our son Landry after five years of trying for a baby. My infertility journey was incredibly difficult: We had several rounds of failed assistive treatment before I was able to get pregnant, and we were so excited to welcome Landry into the world. 

Landry was diagnosed with Down syndrome in utero, and shortly after, we were diagnosed with a very dangerous condition called vasa previa, where blood vessels develop over the cervix. That required surgical treatment and careful monitoring. Landry was ultimately born 6 weeks premature and spent two months in the NICU. We knew Down syndrome can show up in a lot of different ways and while Landry doesn’t have the heart issues that around fifty percent of kids do, he does have some issues with muscle tone. He also needs a feeding tube for nutrition and will need ongoing supportive care for the rest of his life. 

He's such a happy baby, just a joy to be around. He loves watching Ms. Rachel on television, which I have no complaints about since she’s so educational and fun. And Landry always enjoys watching basketball with his daddy — we’re a basketball family, his big sister plays basketball and his dad and Gramps are both huge fans. Landry loves petting the family dog and cat and he’s just starting to learn how to crawl.

Being on Medicaid is transformative for Landry. Medicaid pays for all his therapies and medical needs: He’s doing speech, occupational, and physical therapy during this really critical period of development. He is eligible for Medicaid because he was born with a developmental disability, so when his private insurance doesn’t cover something, his Medicaid helps with that. Medicaid is what allows Landry to grow up in his community and with his loving family, instead of being in an institution, which is where a lot of kids with Down syndrome have ended up historically. We’re seeing that people with Down syndrome want to be active, contributing members of society when we provide them with the support they need. More opportunities for kids like Landry open up possibilities that we couldn’t even imagine ten years ago, like becoming a lawyer or legislator. 

The financial stress of being a caregiver for a medically complex child can be immense, sometimes overwhelming. Medicaid has changed our lives for the better; we don’t have to stress out over the hundreds of dollars in weekly copays for his private insurance or worry about whether we can afford a medically needed or recommended treatment or therapy. This coverage lets us dedicate more time to work — I’m an attorney and also work in the public sector — and caring for both our children. 

With Landry, we also have to think about the future. Someday we will be gone, or we will be too old to care for him ourselves, and we need to know that Landry will be able to access the care he needs. Many adults with Down syndrome will develop dementia later in life, which means he will probably need to be in a long-term care facility at some point. 

I know some people say Medicaid has so much fraud and abuse. Cases of fraud aren’t coming from the patient side, though. Medically complex children aren’t gaming the system, they’re just trying to live. And if you’ve ever had to file any kind of Medicaid appeal, you know hard it can be to access even the benefits you’re entitled to: We’re still fighting over a hospitalization that they don’t want to cover! 

I thought I was a well-informed and politically active person before I had Landry, but his life has really opened my eyes to a lot of issues. I had no idea what it was like to be a caregiver, to have to fight so hard for your kid. It unlocked more compassion than I thought was possible, and it makes me want to fight to make sure all kids have access to the futures they deserve.