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It was hard enough to figure out What To Pack for your child’s surgery, now you need to organize all those questions swarming around in your head right now and get them written down. You have a million of them up there, I know.
I was blessed enough to find out about my son’s HLHS diagnosis at 22 weeks gestation. I say I was blessed to know before hand because I am the type of person that likes to be prepared as much as I can. In the heart world, everything is unpredictable so the fact that there was something I was able to somewhat prepare for was huge to me.
There are so many heart parents that don’t know about their child’s heart condition until there are problems after birth, so if you are here now because you are anticipating your child’s birth and are lost and confused, consider yourself lucky to be able to prepare at least a little.
PLEASE DO NOT LET THESE QUESTIONS OVERWHELM YOU.
Do not feel like you have to ask these all at once. Ask them when you are ready. Remember, no two heart families are the same so some of these questions might not apply to your family. Only you can decide what’s best for your child.
If you also have found out before your baby is born, here are some questions you should ask your child’s surgeon and hospital team before birth.
–Will I be able to deliver naturally? If so, will a natural labor put too much stress on the baby?
-How soon after birth will the surgery be performed?
–Will there need to be a cardiac team on standby just in case the baby goes into duress after labor?
-What will happen between birth and the first procedure?
-Will I be able to breastfeed?
-Will I be able to hold him/her? If so, what is the safest way I will be able to do so?
-Can I stay with my baby overnight?
-Does my baby have to meet a certain height or weight before the surgery can be performed?
Make sure to take a notepad with you to write down what the surgeon has to say. It is a lot of information to take in at once. These notepads from Bloom Planners are personally my favorite.
Be honest with your child’s care team as your questions and concerns arise. This is extremely important. If you don’t feel comfortable with the care your child is receiving, don’t be afraid to get a second opinion.
–How long will the surgery take?
-Will we get updates throughout the surgery?
–How many Norwood procedures have you performed at this facility? What is the survival rate?
-Will the chest be closed after and what kind of stitches will you use?
-How many of these surgeries have you performed at this facility?
-What are some common complications with this procedure?
-Can I tour the heart center and the Intensive Care Unit where my child will be before?
-What kind of support is available to us emotionally and financially?
After surgery is when questions will arise daily, sometimes hourly. WRITE THEM DOWN.
I really encourage you to write a list of questions before hand so that as it gets closer, you can add questions you didn’t think of before. Leave a little bit of space to write the doctor’s detailed answers and don’t be afraid to ask them to repeat something.
(Check back for my printable!)
Please don’t ever feel like you have a dumb question.
One of the biggest things I regret is not asking to hold my son sooner. I didn’t get to hold him until he was a week old. Looking back, I think I would have been allowed to hold him in the NICU before surgery but I was too scared to ask because the nurses were so busy and I felt like I would hurt him somehow.
Don’t be afraid like me. Don’t be afraid to ask anything.