CDH parents?

My son was recently diagnosed by a specialist as having left sided CDH after an abnormality was detected at his 20 week anatomy scan. Wondering if any other parents are currently dealing with this condition or have experience (I know it is such a complex/specialty case). My husband and I have decided to relocate to John’s Hopkins in Florida to deliver with world renowned surgeon Dr. Kays to give him his best chance at survival and future quality of life. After 4 miscarriages and trying to conceive we are DEVASTATED by this and I would love to connect with other moms who have been through this. This is still new territory for me and I’m still learning. Open to advice.