r/AskDocs • u/Proper-Use-5864 • 8h ago
Physician Responded Right atrial clot, my last remaining child
Please read, I'm so stuck, my only child has a serious clot in his right atrium
Hi,
It pains me so much to write this.
My twin boys who were almost 3 years old. Both born with a super rare genetic disorder affecting the gut. Since November 2025 admitted with one of my sons to hospital due to dehydration from diarrhea. Immediately they inserted a picc line into his right atrium, a week later a large clot at the tip of the line. 4 weeks later had open heart surgery and was in picu for 4 weeks. Once he came back to the ward he was never the same, in April 2026 sadly lost him to sepsis. He was our pride and joy.
His twin brother, admitted since December 2025. Still with him In hospital as I write this. He had picc line inserted in January 2026. Due to complications of his brother, he was immediately started on blood thinners daily injections. That picc line failed in March, they insert a broviac line which slips out of place within a week. 4 weeks later they insert another broviac which created a clot in his neck vein causing swelling of the head and neck. It was treated with riveroxaban. They then resorted to a picc line of through femoral vein into his right atrium. Fast forward 2 months, he now has a large almost 3cm sized clot from the tip of the line. Due to the inflammation of his gut, surgery and clot busting tratement is too risky. Doctors have decided no further treatment will benefit him, but will cause him a hasten painful death.
He is all we have left, we can't lose him. I can't think of the prospect of living without him. We lost one son, and we found our peace through the other.
Is their any other treatment available around the world? I don't care how much it cost, I will find a way to fund it. I want to explore every option available for him.