1. How did this happen?
CDH is caused by the diaphragm not closing or forming at around eight weeks gestation. Organs that should have been in the abdominal cavity then float freely into the chest cavity, taking up valuable lung space. Why this happens is not known.
2. 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 anomalies. Studies also show that certain environmental factors might cause CDH; such as exposure to chemicals like Nitrofen or pesticides, imbalanced Vitamin A and Folic Acid. We conduct our CDH Patient Registry to help study these common factors so that maybe some day other babies will be spared from this birth defect.
3. 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. We can’t blame ourselves for not preventing something that does not have a known cause.
4. 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 taking too much can be harmful. There is just no way of knowing how to prevent CDH from happening.
5. How often does this happen?
CDH occurs in about 1 in every 2500 babies- this is more common than being struck by lightning.
6. Has anyone else near me had this same thing happen?
By joining CHERUBS we can help 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/her former patients, that is your best bet to find another family in your town.
7. Is there someone I can talk to who knows what this is?
Everyone at CHERUBS knows exactly how you feel. We have parents on-call to listen to you when you need to talk. You are no longer alone.
8. 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 of occurrence in another child 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.
9. Could this have been detected?
With today’s technology, CDH is being detected as early as 16 weeks gestation by ultrasound.
10. 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.
11. 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.
12. What would life have been like if he / she had survived?
Again, each child is different. About 95% of our cherubs have feeding problems, 75% have asthma, 75% have reflux- though many cherubs do have “normal lives,” some have complications such as hearing problems, cerebral palsy, developmental delays, and a few have more severe problems.
13. 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 and a good diet are the best things you could do for your baby.
14. 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.