The Stinson Family

Scroll down to see updates as the Stinson family progresses in their CDH Journey! (All updates are written and given by parents with consent)

Inital Backstory

Our baby boy was diagnosed with severe right sided CDH and DORV at just 25 weeks gestation.

After many appointments and many talks with specialists at our local hospital, we decided that our son needed to be at more CDH centered hospital. So on a wing of faith and push from God, we decided to split up our family and make the move 500 plus miles away to Cincinnati! Older kids still had school and sports, luckily we have family to help care for them. Myself has permanently relocated to help ensure our son gets the best treatment possible, my husband, travels back and forth every other week, trying to keep us financially afloat. 

Update 10/31/25

At our 30 week appointments we were told our baby boy wouldn’t survive long outside the womb and we would only be offered comfort care! My partner and I decided to take the journey 9 hours away to Cincinnati Children’s hospital. CCHMC has been absolutely amazing! Westyn still has a long road ahead of him but he has been proving everyone wrong since day one! He came off the ventilator on October 20th and has been on a CPAP machine. His right lung is still struggling a bit but the doctors here are working hard to get it to open up fully. I am so thankful for this team and the support from this foundation. It’s truly a blessing during a hard time.

Update 11/30/25

"Westyn hit a little road block 10 days ago. He wasn’t acting himself. After an X-Ray, we found out that he had developed NEC. Luckily it was caught very early on and we were able to treat with antibiotics and there was no need for surgery. At 10 days he was rescanned and there was no sign of NEC! Praise GOD!! We are restarting feeds soon! So we will get him back on track for feedings. He has been making such good progress! I am so thankful! He has been weaned off the CPAP and is currently on high flow! He is getting bigger and stronger everyday! We couldn’t ask for a better team of nurses and doctors to care for our little CDH/CHD Warrior!!! So proud of how far he has come!!!!"

Update 1/4/2026

"Westyn has had his share of hurdles over the last month, but he has concurred them all!!! He ended up catching Rhinovirus and it really affected his respiratory system. So unfortunately we had to slide back on support. But once he was over that he made huge gains on his respiratory weans! He is now down to 3 liters HF and looking to wean to 2 in the coming days. We are excited to try bottle feeds!!! We are inching closer and closer to home!!! We are so proud of our little guy!!!!"

Update 2/1/2026

"Westyn was doing so good and we were so close to discharge. On January 9th, I noticed his repair site had become raised. Over the next couple days the site continued to get larger. This was reported to medical staff and we began to keep a closer eye on it. The site ended up getting rather large. Surgery came and lanced it open to find it was filled with infection. After a week and a half of antibiotics and multiple lances. It was decided to take him down for a CT scan. Ct scan showed possible mesh infection. Westyn was taken into surgery for a wound clean out. He was placed on a wound vac and antibiotics. They also found out that his ribs have been sitting in this infection for a few weeks and he had developed osteomyelitis, a bone infection. Westyn is currently on high doses of antibiotics, which he will be on for the next 6 months. He also had to go back on oxygen because the infection causes pressure on his lungs. He seems to be feeling a little better. Surgery was on January 20th and he is 4 days post op."

Update 3/1/2026

"Westyn has had an incredibly long and challenging month. What initially appeared to be a small infection around his surgical site turned into something much more serious. After additional testing, we learned the infection had spread deeper, involving his ribs and leading to a bone infection. A CT scan revealed that the infection was tunneling toward his ribs and had formed a pocket of infection around his mesh. He underwent five separate surgeries to thoroughly wash out and clean the area. Following those procedures, he spent four weeks on a wound VAC to help promote healing. Thankfully, everything began to look much better, and we truly felt like we were finally on the road back home. During one of his CT scans, doctors noticed signs that suggested a possible floppy airway. An airway evaluation confirmed that Westyn has a laryngeal cleft, and he underwent corrective surgery on 2-19-26. His recovery was difficult. The swelling became so severe that he coded and required intubation. Now, just a few days later, it appears the infection along his side may have returned. It has been an incredibly hard stretch for him, and he has not been feeling his best. Despite it all, we continue to hold on to hope and pray that better, brighter days are ahead for our sweet boy."