Every year, one out of every 700 babies in the U.S. will be born with Down syndrome, making it the most common chromosomal condition. For the last decade, Avera Health has offered a specialized clinic focused on meeting the unique needs of those with Down syndrome and their families.
She has piercing blue eyes and is almost 2 years old. This little angel is perfectly named Havyn.
"We found out probably in March and I think by April we had her name picked out. Just meaning a safe place. So she's our safe place,” said Mikayla Bellefeulille, Havyn’s mom.
And for Havyn, this is her safe place. A clinic designed to care for kids like her.
“My main goal in starting the Down Syndrome Clinic honestly was to consolidate care. If they can see cardiology, endocrinology, pulmonology, or if they need to see ENT, we can coordinate that. We try to get as many of their specialists to be seen on this day as possible, just to decrease the number of times that they have to come here to the hospital,” said Jennifer Tegethoff, MD, FAAP one of the co-founders of the Avera Down Syndrome Clinic.
“They help like give a deeper understanding of like the different aspects. I'm a physical therapist and I know a little bit about it (healthcare), but it's almost like they can dive deeper and say OK you have to do this or you should go see this specialist. They give you more ideas of what life will look like,” said Bellefeulille.
Equipping Parents and Empowering Patients
For Dr. Tegethoff, that comes from years of being a pediatrician as well as the first-hand mom experience from her teenager, Aaron, who also has Down syndrome. The lessons learned led Dr. Tegethoff to create the clinic as a resource to families in need of support.
“I am not meant to be in place of their primary care. They still see a primary care physician, but I am just another set of eyes to look at things and make sure that they're getting all the proper evaluations done, therapies, labs that might be different than you would see in a child that doesn't have Down syndrome,” said Dr. Tegethoff.
For Havyn, this is her third visit. Today means getting measurements and tracking other key milestones. Something she's been doing since day one.
“She was also born with a unilateral cleft lip and palate. So we're dealing with a feeding aspect too. She’s gone through a lot. She's very spunky, like you would not know. She's funny, she's a spitfire for sure,” said Bellefeulille.
The Beautiful Gift of Joy
Hearing the diagnosis of Down syndrome can be hard for any parent to take, but both of these moms agree: It's one of life's most beautiful gifts.
“I knew about all the medical complications that you could have. What I didn't know is about all the beautiful things that happen when you have a child with Down syndrome,” said Dr. Tegethoff.
“It really isn't the end of the world. It’s been such a fun journey. She's already come over so many odds. I was 27 when I found out. I just thought the world was over, but she's been like the best thing to really ever happen,” said Bellefeulille.
“I wish that I could go back and tell the old me like, yep, there's going to be hurdles. But like every kid has hurdles. This is going to be beautiful too,” said Dr. Tegethoff.
“It's a great, it's not a scary diagnosis. It's, you know, it's just life-changing,” said Bellefeulille.
The Avera Down Syndrome Clinic began more than a decade ago and is currently held once a month at the Avera McKennan campus. To learn more follow the link.
