James was born to proud parents Salena and Tyler on August 15th 2022, weighing 8lbs 3oz. This handsome little man has overcome so much in such a short time and continues to inspire me with his progress. Check out their story below.

Share your pregnancy journey. Were you expecting hospital time or was it unexpected?


This was unexpected he was anticipated to go home and come back in 6months for heart surgery.

Share your hospital journey so far. How long have you been there? What obstacles have you overcome?


James is our first child and we are going on 3 months here at SMH. It has been a roller coaster of emotions as everyday is a different day and depends on him. James was born with unexpected issues. James has been very sick 3 times and we almost lost him due to one of those illnesses. James was born with EA/TEF and had surgery at 2 days old which went great. He developed something called tracheobronchomalacia which made him fail extubation 3x. He is still on a ventilator and is pending a cardiac surgery to then in hopes go to Boston children’s hospital to get a surgery they offer for his TBM and avoid him getting a tracheostomy. We also learned last month that James has mild brain abnormalities and low vision. He might have CHARGE syndrome or VACTERL association we are pending genetic testing still. It’s been a hard road but we’re gonna be there for him no matter what or how long.

What do you want people to know about having a newborn in the hospital?


Tips:

  • It is hard and every day is a new day
  • Take time for yourself and relationships
  • Don’t be afraid to ask questions
  • Children are extremely tough and one day this will all be a memory to you and them.

Is there anything else you wish to share?


James’s journey page for anyone who wants to be along for his ride: James' Facebook Group

Update: March 2023


James was officially diagnosed with CHARGE syndrome (CHARGE is an abbreviation for several of the features common in the disorder: coloboma, heart defects, atresia choanae (also known as choanal atresia), restriction of growth and development, genital abnormalities, and ear abnormalities). He had his first heart procedure and was transferred to Cincinnati for airway evaluation due to multiple failed extubations. He's currently waiting on one final open heart surgery before going back to NY to go home. We're routing for you James!