Name
*
First Name
Last Name
Email
*
Warrior's Name
*
Birth Date
*
MM
DD
YYYY
Warrior Status
*
If your warrior did not survive, but lives on forever in your heart, please share something about them here
It could be from pregnancy, your precious limited moments together, a color that remind you of them, or any signs they've sent you.. something that makes you smile.
City + State of CDH diagnosis
Diagnosed at which stage of pregnancy
0-17 weeks
18-24 weeks (most common)
25-30 weeks
31-35 weeks
36-42 weeks
Post-natal (After birth)
How did you receive the diagnosis?
Any additional defects/comorbidities?
If yes, please detail
Birth/Repair Hospital
If your warrior was born and then transferred for higher level of care/repair, note both hospitals here.
Reason(s) you chose your hospital, if any
Born at how many weeks
41+
38-40
34-37
30-33
Less than 29
Labor/Delivery Type
Induced
C-Section
Spontaneous
Share something about your labor experience
Was your warrior on ECMO?
If yes, please detail
1. Age placed on
2. How many days on
3. Repaired on ECMO yes/no
4. Any complications (if yes, detail)
Repaired at how many days old
Location of CDH
Grade of defect
A: Small defects that are completely surrounded by muscle
B: Defects where more than 50% of the chest wall has diaphragm tissue
C: Defects where less than 50% of the chest wall has diaphragm tissue
D: Defects where there is a complete or near complete absence of hemi-diaphragm
Not exactly sure, but I think it was small.
Not exactly sure, but I think it was large.
Honestly, no clue.
Type of Repair
Stitches
Gore-Tex (patch)
Muscle flap
Type of Surgery
# days in Hospital
Discharged with medical support devices?
If yes, what type(s) of support?
How long was each device(s) needed?
Share your journey, complications, and any tips/tricks you learned along the way! (if you don't have time to do it all now, write what you can and email us the rest later)
Discharged with medications?
If yes, which type(s) of meds?
How long was each med(s) needed?
Share your journey, complications, and any tips/tricks you learned along the way!
After discharge, did you meet with any specialists regularly?
If yes, describe the support:
ex. Frequency of visits, how many weeks/months of support, what were the main challenges, etc.
Since discharge, has your warrior been readmitted for complications/infections?
If yes, please detail
(Reherniation? Skip this section and register reherniations on our separate form:
www.survivingcdh.org/register-reherniation)
1. age
2. diagnosis
3. treatment/surgeries (if surgery: was it at birth/repair hospital?)
4. length of hospitalization
+ any other details you'd like to share!
While hospitalized, did you use any hospital-provided psychosocial services?
If yes, please detail
How/what did they do to help you while in the hospital?
Tips/tricks for YOUR hospital
Whatever resources helped you the most at YOUR Hospital that you would pass along to another family spending time there.
Must-haves for Hospital Life
What are the things you had for yourself (and/or baby) that made Hospital Life more comfortable?
Anything else you'd like to share
