Support Baby Henry's Medical Journey

On June 17th, Steve and Lauren welcomed their third child into the world. Henry Scott Strauss was born weighing 4 lbs 2 oz. and has unfortunately only been able to spend about five weeks at home with the rest of his family.

Henry was born with a rare genetic disorder called branchio-oculo-facial syndrome (BOFS). As a result, he has a bilateral cleft lip, a cleft palate, a multi-cystic kidney, and moderate-to-severe permanent hearing loss. He has had to have various surgeries, including having a G-tube inserted so that he can eat enough to grow and stay healthy, along with multiple jaw surgeries to help open up his airway. These issues kept him in the NICU for the first two and a half months of his life.

Recently, Henry has been having severe apneic, or breath-holding, episodes and has been hospitalized again for that. He also had been fighting a severe jaw infection for the last month. After countless scans, tests, imaging, and more, there is still no answer for these episodes. Good news is that they have decreased since he has been put on oxygen 24/7. The jaw infection is finally gone but he needs to be on various antibiotics until his next jaw surgery.

Whenever he is able to come home, Henry will need to be on oxygen and will need to be connected to a pulse oximeter until an answer is found for his episodes. In his immediate future, he will be having his jaw hardware removed and will be having his first lip surgery, both of which are likely to take place before the end of the year.

Throughout all of this, Henry has become such a happy baby. Coming up on five months old, he is finally over 12 lbs and is smiling and laughing more than ever, even after everything he has been through. His older brother (William, 5) and sister (Vivian, 3) love him dearly and can’t wait for him to be home with them again.

We are creating this GoFundMe to help with the unexpected expenses that have come up along the way… and the ones still yet to come. Some of this includes: daily trips to Rochester for Steve and Lauren to be with their baby boy; food and meals while staying in the hospital; multiple trips each week back to Rochester for ongoing appointments when Henry returns home; purchasing various equipment and baby gear to accommodate Henry’s diagnoses, special needs, and ongoing care; and the expected increase in energy bills due to Henry using an oxygen concentrator while at home.

If you are able to donate any amount, Steve and Lauren would would be incredibly grateful. Thank you for taking the time to read about sweet baby Henry and his family as they take all of this on together.