Stetson is a brave, inspiring and loving three year old boy. He resides in Valrico, Florida with his mom, Chelsea and his dad, Cody. Some of the things that he enjoys most are cuddling up with his blankets, being outside, getting beard tickles from his dad, and being surrounded by his loving community. Stetson has been through more than most will ever imagine and yet he keeps on fighting every day. His bravery serves as a reminder to those around him to always continue moving forward and not let the obstacles of life stop you.
Chelsea had a very typical pregnancy. The routine ultrasounds and doctor appointments did not reveal any issues. Chelsea and Cody focused their time on preparing for the arrival of their firstborn with joy and anticipation. When it came time for Stetson’s arrival the labor and delivery went as smooth as can be expected, but towards the end of labor, they noticed that Stetson’s breathing was off and his oxygen levels were low. He was immediately rushed to the NICU where he was put on c-pap, oxygen, and had a feeding tube placed since he lacked the ability to suck. Chelsea explains, “Basically he was lacking overall muscle tone. He was not moving as much as he should have been.”
When Stetson was one day old he had an MRI so the doctors could figure out what was causing his low muscle tone. The MRI showed that there was some brain abnormality going on and they were unable to offer a name or a specific diagnosis at the time. When Stetson was three days old they transferred him to a children’s hospital that was able to offer more specialized care for what he would need. The neurosurgeon at this hospital completed their own testing and when Stetson was a week old he was diagnosed with holoprosencephaly. Holoprosencephaly is an abnormality of brain development in which the brain doesn’t properly divide into the right and left hemispheres. It typically results in low muscle tone, failure to thrive, and epilepsy.
Once they were able to identify Stetson’s specific diagnosis he had a gastrostomy tube (g-tube) placed so he could receive proper nutrition,, since he still was unable to use his muscles to suck. A g-tube is inserted through the abdomen and is able to deliver nutrition directly to the stomach. “That first month in the NICU was the hardest, it all happened so fast and it was all so shocking. We were not expecting anything. I had such a normal pregnancy and had no time to prepare,” Chelsea shares. At a month old they were able to send Stetson home and begin to transition into their new normal. He was home about a month with no incidents until one day Chelsea noticed that he seemed like he was not feeling well. He was soon rushed to the emergency room to get checked out and that’s when he stopped breathing and he had to be intubated. Tests were ran again to try and figure out why he was breathing fine on his own and then all of a sudden unable to do so. Chelsea explains, “They described it as he just got tired and his muscles couldn’t handle it anymore. He just couldn’t do it on his own anymore. He could still breathe a little bit, but just not big enough breaths to keep his oxygen levels right.” Stetson remained intubated for two weeks at the hospital after many attempts to extubate him. The doctors brought up the idea of a tracheostomy with Chelsea and Cody. “They pretty much gave us a choice. It’s either a tracheostomy or we extubate him and let him get tired and stop breathing and he will pass away. It was so shocking to hear that because he was aware and smiling and alert and that was so hard to hear.” They chose to move forward with the tracheostomy.
They remained in the PICU with Stetson for close to three months. It was around this time that he was also diagnosed with epilepsy. They were able to head home when Stetson was around four months old. They came home with a ventilator, oxygen, a feeding pump, O2 monitor, and suction machine. “We had no idea what we were doing. He was so tiny and fragile, but we are much more comfortable with where we are at now. He is still on the ventilator and oxygen but he is much more stable. We are able to pick him up and move him around and take him outside,” Chelsea shares.
Stetson’s parents do everything they can to ensure that he is living a life full of love and joy. They spend their time playing with him, taking him fishing, and exploring the outdoors. He is surrounded by a community of individuals who love him deeply and he is reminded of their adoration and devotion daily. Although he cannot speak through words, he communicates every day with his loved ones. “He can’t talk, but he can. He talks with his eyes. We have learned to speak his language,” Chelsea shares. “He has taught us so much. I feel like we are just better people because he exists.”
Time to get loud shouters!
Throughout the month of January we will be shouting love for Stetson and his family. It is a great honor to be able to tell Stetson’s story and we hope you will join us in getting to know him and his family.
Join us in shouting loud for Stetson!