1.
How did this happen?
CDH is caused by the diaphragm not closing or forming at around 8 weeks
gestation. Organs that would 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.
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 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.
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, and we aren't
even sure if that would cause it either.
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 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.
5. How often does this happen?
CDH occurs in about 1 in every 2500 babies- this is more common than
being struck by lightening or a tornado.
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 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 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. Unfortunatley, the United States does not
have a national guideline or require liscensing to perform an ultrasound.
Make sure the person performing your ultrasound is fully trained.
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. 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.
12. 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.
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, 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.
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.
15. 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).
16.
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.
17. 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.
18. 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.
19. 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 delay and a few have more severe problems.
20. 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.
21. Does a good Head to Lung ratio mean my baby will survive?
Head to lung ratio is used to attempt to predict what procedures can or
may be used to help your cherub. It is only a guess and not
an accurate prediction of whether your child will survive or not or
what treatments or procedures will be needed.
22. I read on-line that Lung Function will be key to my baby's survival. Is that true?
Good lung function is always necessary for a cherub to survive and come
off of ventilation support - but it is not the deciding factor nor the
only only focus of a cherub's medical care. These babies
also need good kidney function, brain function, and other system
functions. And they need to be kept clear of
infections. More cherubs are lost to blood infections,
pneumonia, ECMO complications and kidney failure than poor lung
function.
22. Does every child with CDH have pulmonary hypertension?
No. Each child is different.
23. I'm not sure what hospital to go to!
We cannot refer a specific hospital or doctor to you, but we can
encourage you to go to a hospital that has experience with CDH and an
ECMO team.
24. Why does 1 hospital have a 80% survival rate and another have a 50% survival rate if they are doing the same things?
It's important to ask what factors are included in survival
rates. Do they include all CDH babies or only those who survived
to have surgery? Do they include all babies or those who were
born at their hospital or survived transport? Do they
include babies with other birth defects? Or genetic
issues?
