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Congenital heart defect


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Hello anyone, all and everyone out there...


Its Sunday night, and I'm pretending to be asleep upstairs whilst my husband is downstairs and my 3 year old son safely sleeps next door. I have another son, who should be five and half months old right now but died when he was three months old of a cardiac arrest.


He was diagnosed at 9 weeks old when I went to the GPs over concerns of feeding and restlessness, my life changed that night as we were rushed to the hospital and from a concern over feeding I was faced with seeing a cardiologist with my husband at 2 AM who informed us that our son had pulmonary attresuim with two holes in his heart. That his heart was "marvelous" because there were so many things wrong with it. I lived with him for a month in hospital with tests and so forth done, my family was torn apart. He flew threw open heart surgery and a week after, on the day when all the nurses and doctors had gushed to tell us they were impressed with his recovery rate. I skipped to the car park to walk my son and husband back to the car and we all planned holidays and trips and for the first time had hope in our hearts for a normal family life yet again. Little did I know for that 10 minutes I left him, for that moment in time I was so carefree his heart stopped working. they saved him for 3 days only for his brain to lose all ability to function and for me to watch my beautiful baby boy lose all life and motion. Then have to decide with the doctors that he needs to be taken off the machines as his brain was starting to shut down.


I felt I was doing so well after a two months, but on Thursday I saw a photo of him I have seen a thousand times and now I can't stop this pain tearing me apart or crying pretty much anytime of day....I want there to be hope for my future that I will get through this



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2 months is a blink of an eye on this grief journey.

My son, Brian (16) died 6 years ago in a car crash...I have 2 other children.

Our entire lives have changed forever. Please be kind to yourself. It is ok to cry and for your family to see you cry..we have lost a piece of ourselves.

There are many others here that post on Loss of an Adult child thread. We have all traveled different roads to get to the same place.

Colleen, Brian's Mom forever

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Dear Tench,

I'm so sorry for your loss. :(

We had a similar loss with my newborn grandson. He lived for only one day. His heart had multiple anomalies also. They told us he was the sickest baby in our area. :( You can read more of our story in my previous post.

It will be 2 months for us on Monday. :( It's heart wrenching.

My heart goes out to you. I'm so very, very sorry.

We have to take it one day at a time.



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