Becoming a parent can be one of the most life-changing events to ever
occur. How were you affected? Can you tell about how you were before you
became a parent and how becoming a parent changed you?
If you found out in utero, how did finding out about the CHD affect your
feelings during the pregnancy? What did you think about?
If you found out after birth, how did the news affect you? What was the
first thing you thought about? (Be honest! Other men will think the same
things. :-)
If your child has endured surgery, please describe what it was like for
you during the surgery. What did you feel your role was? How did you cope
with the different, conflicting feelings you had?
If your child is past all the scheduled surgeries, please tell about how
you feel about your child's future now and your role in your child's life.
How does having a child with a heart defect change the way you might have
parented your child? What memories do you want your child to have of you
during his childhood?
What Parenting Really Means
Having a child with a heart defect means facing a reality that most
people don't know about -- our children may not outlive us. Tell about how
you came to understand this and what it meant to you.
Please describe some situations where the true meaning of parenting
became apparent to you.
What are some of your goals regarding parenting? Why do you think you
have these goals? How has having a child with a heart defect helped you
define these goals?
Please describe some situations in your own life where you feel you did
the right thing in parenting and some situations where you didn't quite meet
your goal. How did your first reaction make you stop and realize that you
wanted to behave differently?
Lastly, what kind of advice would you give to parents-to-be who are
expecting a child with a heart defect? What do you wish you would have known
before being a father yourself?
Marriage and Faith while dealing with Congenital Heart Defects
Describe your marriage before you had a CHD child. What was a typical
week like? Typical day?
If you had other children before your CHD child, tell how being pregnant
again affected your marriage. Was this planned? A joyful surprise? A
concern?
If you found out in utero that your child had a CHD, can you tell about
how you reacted to the news? Your spouse? How did that strain or affect
your relationship?
There are many facets to a marriage. Our spouse is also our friend, our
lover and our ally. Describe how living with a CHD child affected the
different facets of your marriage.
Lastly, marriage, like any institution, is always changing. Tell about
how your marriage has changed over time and how you feel about your marriage
regarding your future.
Grandfathers' Stories
Being a grandfather to a child with a CHD presents a totally unique set of
problems because you are not only concerned about the grandchild you love,
but also the child you love. Please describe how you felt and what you did
when you found out your grandchild had a heart defect.
What kind of advice did you give your child?
Some families are lucky enough to live close to their children. Where
were you physically when you found out about the heart defect? Did distance
play a role in how you felt or what you were able to do? How did you deal
with the problem of distance, if indeed that was a problem for you?
What did you feel your role was? What kind of responsibilities did you
feel? How did you deal with the feelings and emotions you had at the time of
diagnosis, surgery (if it occurred) and your current situation?
How has your grandchild's heart defect affected your relationship with
your child? Your wife? Your other children? What impact has all of this
had on your family?
What helped you to be strong during the difficult times? What made you
feel weak during this period in your life?
If you had to go through it all again, what would you do differently?
What would you wish to do the same way?
What wisdom do you wish you could impart on your children and
grandchildren regarding any of the following: life/death, health, family,
faith, hope?
Care Options for Complex CHDs: Surgical Options
What kind of surgery had to be conducted? When? Where? How did it go?
Were you given a choice of what surgery was to be conducted on your child?
Or were you told what needed to be done?
Did you child have one surgery or a schedule of surgeries? How did you
deal with your situation? If you had more than one surgery, how did you deal
with the waiting time between surgeries?
What was the most difficult part of having your child have surgery?
What did you learn about yourself when your child had heart surgery?
If you had it to do over again, how would it be different? the same?
What is your wish for your child's future?
Care Options for Complex CHDs: The Wait-and-See Option
When was your child's CHD identified? Where? How?
Why is your child having to wait for surgery?
How do you feel about having to wait? How often do you see your child's
pediatric cardiologist (PC)? What is difficult about visiting with the PC --
or does your wife usually do that? If so, how does this affect your wife,
and consequently you?
What concerns do you have regarding your child and your child's heart
defect?
What is your hope for your child's future?
Care Options for Complex CHDs: Compassionate Care
When was your child's CHD identified? Where? How?
What were you told about your child's CHD?
What did you and your spouse do before the decision for compassionate care
was made?
Who else was involved in the decision?
How did your faith affect your decision?
If you had it to do over again, would you make the same choice? Why or
why not?
What advice would you give other families debating over whether or not to
choose compassionate care?
Dads in the Hospital
Describe some of the difficulties involved with being in the hospital.
How did having a child in the hospital affect your work?
How did having a child in the hospital affect your other children?
What routine did you establish in the hospital?
What did you feel was your most important role while your child was in the
hospital?
What did you wish to accomplish while being in the hospital with your
child? Did you accomplish that goal? Why or why not?
What other people did you see in the hospital? What kind of relationship
did you have with these people? What other relationships in the hospital
were important to you?
How did your decision to be there for your child affect your marriage?
What is the most important lesson you learned while your child was in the
hospital?
Special Issues
(feeding problems, speech/language, physical and developmental
delays)
What is the special issue you would like to address? Why?
When did the problem become apparent?
Who has tried to help with the problem aside from yourself? Why? How?
What have you specifically tried to do to help your child regarding this
problem?
If you were to meet another family with a child who had the same problems
as your child, what would you tell that family?
What is your hope for your child's future with regard to this issue?
What is the most valuable piece of advice you have been given regarding
this issue?
Support
(how the community, family and friends can provide support)
What kind of support did your community provide you when your child's
heart defect was identified? your family? your friends?
What kind of support do you WISH had been provided by your family, friends
and community?
What was the most helpful type of support you received? Why was it
helpful? (This may be different for different phases of your life -- when
you found out, when your child was in the hospital, if your child has
suffered any setbacks, when your child has had some accomplishments, at
certain holidays or special occasions . . .)
Knowing what you do now, if you had a family member or friend whose child
was born with a CHD, what kind of support would you provide? What if you
read about a child born in your community with a heart defect? What kind of
support would you wish to provide to these strangers, if any at all? Why?
Did you have any online support? Can you please describe that support and
what it meant to you?
Was there anyone whose "support" was actually not helpful? What kinds of
limits should be placed on "support"?
Dads in a Catch 22 Situation
(the conflict between needing to work and
needing to be with child during critical time)
Please describe the kind of work you do.
What/where/when was your child's heart defect identified? What kind of
project were you involved in at work? How did this affect your work?
How did your employer react when you told him/her about your child's
condition? Or were you afraid to mention the situation for some reason?
Why? If you are self-employed, how did finding out about the condition
affect your work?
What kind of rules/regulations regarding your company were helpful
regarding your child's condition? harmful?
How did you reconcile your feelings of needing to be with your child and
needing to attend to your work?
Why did you feel your work was important when your child was in the
hospital? Do you think you ever used your work as a means of escaping the
reality of what your child was facing? Looking back now, do you wish you had
done things differently?
What was your solution to your Catch 22 situation? Will you choose the
same solution, should you need to, in the future? What did you learn from
your experience? How has it changed you?
What was the greatest lesson you gained from your experience? What advice
would you give future fathers facing the same situation you did?
Shooting Stars
(bereaved dads chapter)
Please describe when your child's heart defect was identified.
Describe the birthing experience if pertinent (if your child was a baby
when he/she passed away). If your child was older when he/she passed away,
please describe your life with your child.
What options were you given when your child's heart defect was identified?
Where were you when your child passed away? How did you find out your
child passed away?
What did you do? What role did you feel you needed to fill at that time?
Did that affect the way you allowed yourself to feel? Did it affect what you
did?
When did it really hit you that your child was gone? How did you deal
with your feelings at that time?
If you would like to, please describe your child's funeral. What kind of
thought and preparations went into this event? Who made the preparations?
Do you wish anything had been done differently?
What lessons have you learned from losing a child? What has been the most
difficult thing for you to reconcile?
How has losing a child affected your faith? your marriage? your
relationship with your other children? your relationship with your extended
family?
What kind of support did you receive when your child passed away? How did
you feel about it? Looking back now, how do you feel about it? Is there any
time you wish you had reacted differently to people's offer of help?
What advice would you give to a newly bereaved father?
What is the most valuable lesson you learned from your child?
Heart Siblings
How old were your other children when your heart child's defect was
identified?
How do you think your child's heart defect affected each of your children?
What kind of behaviors did you notice when your child's heart defect was
identified? This may be very different for people who find out in utero
versus those who find out after birth. (Perhaps your children regressed with
such skills as potty training or feeding themselves; or perhaps your children
resorted to thumbsucking or some other type of behavior to comfort
themselves; perhaps your children had more acting out behaviors or,
conversely, became little angels; perhaps your children had certain behaviors
in school or daycare which their teachers called you about to discuss)
Did you think to provide support to your heart-healthy child(ren) and if
so, what was it?
Did you tell your heart-healthy child(ren)'s teachers? counselors?
principals?
What kind of behaviors did you notice when your heart child was in the
hospital?
How did having a child with a heart defect affect your other children's
relationship with the heart child? with each other? with you? with your
wife?
Who comforted your heart-healthy children when your heart child needed
your attention?
What kinds of coping skills did your children exhibit when your heart
child has been in various situations? (hospitalization, doctor's visits,
visits from therapists, etc.)
What do you think your children have learned by having a sister or brother
with a heart defect?
Do you think having a sibling with a heart defect has been a relatively
positive or negative experience for your heart-healthy children? Why do you
feel that way?
What do you think is the most valuable lesson your heart-healthy children
have learned from your life as a "heart family"?
What did you do "right" regarding your heart-healthy children? What do
you wish you had done differently?
What advice would you give other families facing a life with heart-healthy
children and a child with a heart defect?
Dads Around the World
Where do you live? Where were you when your child's heart defect was
identified? Do you feel you were in a "good" place for this or was your
location a disadvantage?
Please describe what happened to your child and your family since your
child's heart defect was identified.
One thing that other people will be interested in is the amount of support
you receive (or don't receive) from a number of sources (government -- local
and beyond; employer, family, friends, community) so please include that kind
of information
How did/does insurance play a role in your child's care?
What kinds of customs/ceremonies do you have in your country which had
significance in your child's life? Were there certain activities it was
important to you that your child take part in? If so, was your child able to
do so?
How do you think having a child with a heart defect has affected your life
in your country?
What kinds of concerns do you have for your child?
What do you wish for your child's future?
What is the most valuable lesson you have learned from having a heart
child?
Adults with Congenital Heart Defects
Each of you will have a special story to share. Please describe when you
born, where, and when your heart defect was identified.
What kinds of stories were you told about your birth?
How do you think your birth affected your parents?
When did you have your first surgery? What was it? Who did it?
How many surgeries have you had? Do you remember any of them?
Depending on how old you are, you will have seen the development of
pediatric cardiology as a field. Can you please describe some of the changes
you have noticed and how they personally affected you?
How did having a heart defect affect your childhood?
How did having a heart defect affect the way your family and friends
treated you?
Did you ever "use" your heart defect to your advantage? Please describe
that/those situation(s).
Conversely, are there any times when you denied your heart defect because
you wanted to do something that you really knew you shouldn't? What was the
consequence(s)?
How did having a heart defect challenge you most as you grew up?
What lessons about yourself did you learn by growing up with a heart
defect?
How did your heart defect affect your family? Was there one person who
seemed more affected than others? Was there one relationship which seemed
much more strained than others? Why? Who was it with? Do you think that it
was your heart defect that strained that relationship, the surgeries
surrounding it, the financial burden (if there was one) which affected it or
some other reason which might have affected the relationship? What is your
relationship with that person like now?
What was the "myth" that surrounded you? How did growing up with that
"myth" affect you? (I remember hearing my grandmother tell my mother that I
was too good of a baby and that I would die young. My mother even told me
that later. That certainly impacted my life (even though I don't have a
heart defect!). What kinds of things were you told and how did they impact
your life?
Did you graduate from high school? college? trade school? What kind of
training for life did you receive?
Did you get married? Have children?
If you have children, how did you feel when your wife told you she was
pregnant? How did you feel after the baby was born? Did you suddenly have a
better understanding of your parents? How did having a baby affect your
relationship with your parents?
What do you wish for your future?
What advice would you give to parents who have children with heart defects?
Rites of Passage
Think about a certain "rite of passage" that you wanted your child to
attain, but which you felt might not be achieveable due to the child's heart
defect. It could be a religious ceremony (bar mitzvah, Holy Communion or
some other religious ceremony), a family tradition (such as attending a
certain summer camp, going hunting/fishing/camping/other sport for the first
time, attending a particular school or other tradition); becoming a Boy/Girl
Scout; any of those "firsts" such as first date, first kiss, first time to
ride a bike, first time to sleep over at a friend's house, first job, first
car, etc.; or it could be a totally different rite of passage related to
something else that I haven't listed above
Describe in a very concise way the conditions surrounding your child's
birth, identification of heart defect and subsequent surgeries (if any
occurred)
Describe your feelings related to having a child with a heart defect
Describe the fears you faced in having a child with a heart defect
Finally, describe how your child was able to attain certain goals and
ultimately achieve the rite of passage you have selected to share
APPENDICES
ARTICLES FROM DOCTORS
different care options for complex heart defects
quality of life for the CHD child
prognosis for children with CHDs
CHD from a father's perspective
Risks during open-heart surgery
SURVEYS
how fathers can help mothers in the hospital
issues of importance to fathers/fathers' opinions on certain issues
doctors' opinions on care options for children with complex heart defect
