Dear parent of a child born with a heart not fully developed,
My name is Lorie and in 1991, my daughter Sarah was born literally with half a heart. She had 2/4 chambers, and was missing several major parts of the cardiovascular system. When she was born, she was flown to Children's National Medical Center and she was seen by them for more than a year. They had never seen anyone with this defect, and a lot of what we did was trial and error.
I know how scared, confused, tired, and full of questions you are...and that is just to name a few things that you are experiencing. First, I am so sorry for what you are going through. I know how difficult it is, when you don't have all the answers, and are not getting much sleep in the hospital with your child. I want to assure you that the answers will come. I would highly suggest that you take friends/family members up on any offer to help. I will never forget those who came to the hospital on a regular basis to let me go and get something to eat or even to sleep.
I would love to be of assistance to you if you have any questions that I can help you with. You can contact me at: firstname.lastname@example.org. May the Lord bless you.
Sarah's mom, Lorie