Chelsea + Stetson: Life with Holoprosencephaly
I am so excited to introduce you all to Chelsea and Stetson.
I found Chelsea while scrolling on Instagram, and the first thing I noticed was her amazing photography skills! After stalking her page, I saw her son Stetson and knew I wanted to hear her and Stetson’s story.
Please remember this post is intended to bring awareness to Holoprosencephaly and bring support to Chelsea and Stetson’s family. There is no hate or judgement on this blog! Now, let’s get into the post!
Without further ado, let’s get right into this interview!
Chelsea + Stetson
1. Tell us about yourself.
My name is Chelsea Stewart, and I’m from Tampa, FL. I live on a farm with my family and our 10 horses and chickens, so my hobbies basically include anything farming! We board horses (meaning people pay us to take care of their horses) so that’s one way I bring money in, and I’m a full time family and children photographer!
2. Tell us about your family.
My fiancé and I have been together since high school and we’re getting married this June! We have one child together. His name is Stetson and he’s 2 years old! We love to play on the farm, go for walks, and snuggle on the couch and watch movies.
3. Tell us about Stetson.
Stetson is a unique little man. He has the brightest smile I’ve ever seen and he’s always showing it off. There’s not a time when he isn’t smiling. He loves to be outside; he’ll just stare at the sky or the trees and he always has this look of wonder on his face. Like he’s amazed by everything. I wish I knew what was going through his mind. I can look into his eyes and see so much love in there. He could not be more pure and innocent.
4. When and how was Stetson diagnosed?
He was diagnosed about 3 days after he was born. They immediately knew something wasn’t right because he required oxygen so he went straight to the NICU where he was out on CPAP machine (Continuous positive airway pressure machine - typically used for sleep apnea) and a NG tube (Nasogastric tube - used to carry food and medicine from the nose to the stomach).
He wasn’t sucking well either and he also had low tone (meaning he wasn’t moving as much as he should have been). That made them do an MRI and they found that most of his brain was missing. He was sent to a specialist pediatric hospital and the neuro team there diagnosed him with Holoprosencephaly.
5. What were your initial thoughts and questions after his diagnosis?
We were in absolute shock. We planned on having a healthy baby. I went to all my appointments. I took my prenatal vitamins. I was healthy. I did everything right. It was just so scary and unexpected. The first 2 weeks when tests were being run and doctors were telling us the worst case scenario were the worst days of my life.
6. What are some obstacles Stetson faces?
Because of Stetson’s condition, he has hundreds of seizures a day. Since he stops breathing when he has a seizure, he had to get a tracheostomy and he’s on a ventilator that breathes for him. It makes it so difficult to move him around and even step outside our house but we do the best we can
7. How does this affect your daily life?
Each day is different. Some are harder than others. But most are good. Actually, every day we get with Stetson is the best day and a blessing. We don’t know how long he’ll be with us so we cherish every single minute with him. Not knowing what his future will hold is the hardest part.
8. What do you wish other people knew about your family?
People don’t understand and I get that… but it still hurts. We've lost a lot of friends. People eventually stop coming around and inviting us places because it’s hard for us to go out.
9. How could friends and family be more supportive?
The best way people could show their support is by trying to be more understanding. Even just being a shoulder to cry on or listening to us when we need to talk would be amazing.
10. What do YOU need? (Mamas are so often forgotten about so it is important to ask this question.)
I would love to connect with other moms of babies with similar diagnosis. It would be so cool to find another trach family or HPE family in our area to hangout with and talk to.
11. Closing thoughts, or just anything else you would like to add?
I love my baby with my whole entire heart. I love him just the way he is and I think every day about how lucky I am that I was chosen to be his momma. I think he picked us because he knew we would be the most loving family and advocate the best for him. We’re his voice. We have to know when he’s in pain, when he needs something, if his meds need adjusted, if something needs fixed, because he can’t tell anyone. That’s our job. And it’s the best job in the whole world.
12. How can people reach out to you?
Chelsea, thank you for sharing your and Stetson’s story with us. You are such an amazing mama, and you are doing such a good job. Stetson is so lucky to have you in his life! And Stetson is such a fighter. His story has touched my heart and I know it will touch the hearts of so many others out there. God has huge plans for him!
If you would like to be interviewed please send an email to firstname.lastname@example.org or reach out to me on my Instagram which is lilylburton. I want my blog to be a platform for moms of all walks of life so we can all learn and grow with one another.