John Henry Ihus
Start: Nov 29, 2019 - End: Jan 31, 2020
“This is a marathon not a sprint” is repeated to our family on almost a daily basis. John Henry Ihus was diagnosed with Congenital Diaphragmatic Hernia (CDH) at 28 weeks gestational age. His Momma, Nikki, and Daddy, Joe, were completely taken off guard when a normal pregnancy turned into a fight for their first child’s life. CDH affects 1 in 2000 births with a 50% survival rate nationwide. The organs that normally live in the stomach migrate through a hole in the diaphragm severely limiting the growth of the lungs.
After receiving news from two other hospitals that little John Henry would live less than 24 hours, Nikki and Joe travelled across the nation to find the best care. Nikki found Dr. David Kays at Johns Hopkins All Children’s Hospital, St Petersburg. FL. Dr. Kays, who has the best survival rate in the world for these CDH babies, gave John Henry an 80% survival rate. Less than a week later, Nikki and her mom, Sue, travelled to Florida to deliver John Henry and stay for a predicted 4 months.
John Henry was born September 19th, 2019 and put on ECMO, heart and lung bypass, within 24 minutes of life. The following day, he underwent surgery to repair the hole in the diaphragm and move the organs back into the abdominal cavity. John Henry continued to require ECMO support to help develop his lungs for 27 days total, eventually transitioning to ventilator support only. For the next two weeks, he worked on breathing on his own as his support was weaned little by little. On October 28th, John Henry proved that his little lungs were able to support him, and he moved to CPAP, which keeps his lungs open and supplies oxygen. Things were going so well. Momma and Daddy were overjoyed to be able hold him for the first time! Starting to eat was the next step but his reflux was too severe to begin.
On November 16th, John Henry spiked a fever and could not breathe when he was crying. This was terrifying and a major setback in John Henry’s care. He was placed back on the ventilator to give his body and lungs rest and time to recover. Dr. Kays is using antibiotics and steroids to help him heal. Once he has recovered from his infection, the plan is to have him undergo surgery to correct his reflux so he can start eating. He will move to CPAP again then progress to wall oxygen.
John Henry has a long road ahead of him in his race against CDH. This is truly the toughest thing his family has ever had to go through, and any support is greatly appreciated. The profits from this t-shirt, will help his family cover medical costs and travel expenses getting John Henry back home to Kansas City.
Fund Leader: Sue Wood
Fund Type: Medical Causes