Posted by mollyzupp on 01/19/2019

Hi - this is my first post and I'm desperately seeking people who have been where I am. We have done counseling for many months, worked with a very supportive group of friends and church members but really have no one who REALLY gets it.
My 17 year old son was born with multiple heart defects and had 4 heart surgeries by the time he was 12. He has as pacemaker, he has thrived and done well all of his life, until February 2015. In the course of 2 years he suffered 3 flash pulmonary edema on exercise. Each time we spent several days in the ICU then he'd be fine. This past May 9th he had a flash pulmonary edema in bed, he was awoken from sleep. Theyve gotten progressively worse and this time he almost coded. After a few days in the ICU he was good and we went home. On May 19th he once again was awoken in the middle of the night with a flash pulmonary edema, this time, within 90 seconds blood was pouring from his nose and he went into cardiac arrest. It took over 30 minutes for first responders to revive him and once in the ER he went into SCA again,vthis time it took nearly an hour to revive him. After a month in the hospital we brought him home nearly 100% back to normal. Hes never been diagnosed, we live every day in such fear, but we are letting him live and be a "normal" high school senior. He is happy, such a blessing. We just are not able to leave him alone at home sleeping, he naps every day for several hours after school. We cant send him off to college. It's just really difficult some days.


Submitted by SCAFoundation on 02/04/2019


Hi Molly,
We are very sorry to hear about how difficult it has been for your son and for you. We are sorry to hear he experienced sudden cardiac arrest...but grateful to know he survived and is doing well. We will reach out to others who may be able to provide support and guidance. In the meantime, please know we are thinking of you and wishing the best for your son and your family.

Hi Molly,
I am sorry to hear about the repeated events your son - and you - are living through. It is very common, but you are not alone! Reaching out to this group is a great next step. It can be challenging to connect with others with similar experiences since surviving cardiac arrest is still pretty rare. It is true that people who have not experienced it or watched someone else go through it have trouble understanding what you live through every day. I, personally, think that counseling is a good idea to help talk through feelings of fear and post-traumatic stress.

Have you also explored social media support forums or Mended Little Hearts support resources? These may be additional means of support for you and your family.