Do I really need to see a genetic counselor?
No matter what the outcome, it is always wise to speak to genetic counselor. The genetic counselor will go over your child's records and your family's histories to see if there is a genetic abnormality that caused the CDH and to let you know your odds on having another baby with CDH.
My doctor says that my baby will not survive. What advice can you give me on keepsakes and what to do at the time of death?
Hold your baby. Many families regret not holding their babies, but none ever regret holding them. Take pictures and video. Take footprints and handprints and a lock of hair. Make plaster molds of footprints and handprints. Rock your baby, sing to your baby, tell him/her that you love them and though you will miss them very much, it is ok to go. Take your time and don't let anyone rush you. Don't be afraid to cry, yell, scream, or whatever you feel you need to do. There is no emotion that isn't ok to feel.
Could my child have survived with surgery if we had known?
Each child is different. Babies with small defects sometimes don't make it while babies with large defects survive. Even after surgery, some babies don't survive.
What would life have been like if he/she had survived?
Again, each child is different. About 95% of our babies have feeding problems; 75% have asthma, 75% have reflux -- though many babies do have "normal lives", some have complications such as hearing problems, cerebral palsy, developmental delay and a few have more severe problems.
How will I know if I should let go?
You will know it in your heart when/if it's time to say goodbye. Don't let anyone tell you otherwise, because you will be the one who will be grieving. When/if you feel this, there will be no doubt that you are doing the right thing.
Information from CHERUB: The Association of Congenital Diaphragmatic Hernia Research, Advocacy, and Support). Permission to republish retained by Pregnancy.org, LLC.