The email we sent to family and friends
We thought it would be good to start this page with a copy of the email I sent to a small group of family and friends July 6, 2017.
Hi family and friends,
I hope this email finds you well and enjoying all that summer has to offer. Adrienne and I wish we had opportunities to see you more often.
I’m writing with an update on our forthcoming bundle of joy because we received a curveball last month. We could really use your prayers and positive vibes on this one.
We learned at Adrienne’s 20-week sonogram that baby girl — it’s a girl! — has a condition that affects fewer than one in 5,000 births. In simple terms, her diaphragm muscle, which separates her stomach, bladder and liver from her chest cavity, never fully formed. This glitch has allowed stomach and liver to move into her chest cavity and constrict the development of her lungs.
As scary as all that sounds, we are hopeful, and we continue to receive encouraging news. Babies with this diagnosis can go on to lead perfectly normal lives when all goes well.
As we’ve met with doctors with increasing specialization in this disorder, which is called congenital diaphragmatic hernia (CDH), we have seen her prognosis evolve from a 14 percent shot to a 60 percent shot. And we know she is a fighter.
Really good news: We were cleared last week for an FDA trial at Johns Hopkins Hospital — less than an hour from our home — that appears to improve outcomes for CDH babies. We have met with the doctors and are feeling very confident in their expertise. We would be only the 8th family to participate in the trial at Hopkins since it opened two years ago because the requirements for inclusion are so stringent.
Adrienne and I are thinking about creating a web page or blog for anyone who is interested in receiving the updates as they come in, but we wanted to let you know what we know at this preliminary moment.
We have been deeply touched by the emotional and spiritual support that we have received from our parents and siblings and family in the early days. We have begun to tell coworkers and have received so much emotional (and spiritual!) support there too. It helps us. Keep us in your thoughts and prayers, please. I’ve never in my life felt the power of that as strongly as I have in these last few weeks. It means the world.
We can’t wait for you to meet baby girl!