How did this happen?
CDH is caused by the diaphragm not closing or forming at around 8 weeks gestation. Organs that should have been in the abdominal cavity then float freely into the chest cavity, taking up valuable lung space. Why is happens is not known.
What caused this?
The cause isn't yet known. We do know that sometimes it tends to run in families, primarily with genetic problems and other families. Studies also show that certain environmental factors might cause CDH; such as exposure to chemicals like Nitrofen or pesticides. We conduct our CDH Research Survey to help study these common factors so that maybe someday other babies will be spared this birth defect.
What did I do?
Unless you took a bath in pesticides or helped clean up a toxic waste site, there is nothing that you could have done to cause this, and we aren't even sure if that would cause it either.
Could this have been prevented?
Until we find a cure or a cause, this can't be prevented. Taking pre-natal vitamins is a plus, but here is no data that says a vitamin deficiency causes CDH. There is just no way of knowing how to prevent CDH right away and parents can't blame themselves for not knowing how to prevent it.
How often does this happen?
CDH occurs in about 1 in every 2500 babies -- this is more common than being struck by lightning or a tornado.
Has anyone else near me had this same thing happen?
By joining an organization like CHERUBS you find other families who have been through this and we will give you information about families near you. Also, ask your doctor to put you in touch with some of his former patients -- that is your best bet to find another family in your town.
Could this happen again to me? Will all my children have this?
Without a family history of CDH or genetic abnormality in the baby, the chances are given as 2%. We encourage all of our members to seek a genetic counselor to talk about your odds of having another CDH baby.
Could this have been detected?
With today's technology CDH is being detected as early as 16 weeks gestation by ultrasound. Unfortunately, the United States does not have a national guideline or require licensing to perform an ultrasound. Make sure the person performing your ultrasound is fully trained.
Did the doctors/hospital do something wrong?
CDH is a birth defect, caused during fetal development. There is nothing that the doctors/hospital did that could have caused CDH.
How long will my baby be in the hospital?
There is no "normal" recovery time. It could be days or months. Be prepared for anything and hopeful for a quick and smooth recovery.
Do I have to give up my plans for breastfeeding?
Absolutely not. Most hospitals will provide breast pumps so that your baby can receive your milk. Your baby needs your milk more than ever. Keep the pump sterile and pump regularly to avoid mastitis.
Is there anything that I could have done during my pregnancy to help my baby?
Educating yourself greatly helps, also some moms are now receiving steroids to help with lung development and there is the option of fetal surgery. Rest, staying away from drugs, alchohol, and cigarettes and eating a good diet are the best things you could do for your baby. Also ask your doctor about taking steroids that may help your baby's lung growth.
Would things have been different if I had delivered at a larger hospital?
If your child is diagnosed in utero we encourage you to deliver at a large hospital, with experienced pediatric surgeons and an available ECMO machine in case ECMO is needed.
Do I have to have a C-Section?
Unless there is a medical need to have an ultrasound because of other complications involving your health or your baby's health, there is no reason to have a C-Section because the baby has CDH. Vaginal delivery actually helps the baby's lungs because it stimulates surfactant (the secretions that line the lungs).
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.