Jump to content

Mystery Diagnosis Show Made Me Wonder...


lorrie
 Share

Recommended Posts

After watching the Mystery Diagnosis show about OI, I couldn't help but wonder if POTS might have contributed to my son's death. Linda, the lady the show was about, lost a baby too and was told it could have been partly from her low blood volume and lack of oxygen.

I was not diagnosed in 1999 when my son was born. I had two bad episodes while pregnant and had to have had the low blood volume and crazy hr and bp that I have now. He lived 6 days and the doctors were unable to tell us what happened. He looked like he had had a stroke...his hands were contracted and only his brain stem was active. I refused a biopsy, but we did have genetic testing and the genetic specialists was never able to find anything conclusive.

Knowing why won't bring him back, but I have struggled with this ever since his death. I miss him so badly and would love to know what he would look like now. I really think POTS must have played a part...that makes me extremely sad. If I had had a diagnosis then, I wonder if I could have prevented losing him?

Sorry to be depressing, just have this on my mind again after seeing that show and wondered if you all have any thoughts on this.

Link to comment
Share on other sites

I am so sorry for your loss. I can?t imagine what you have been through. I can tell you that I did talk to my EP after seeing that show and he was very disappointed that they linked OI to miscarriage. He says there is no evidence of any connection, or of any problems with the fetus getting adequate oxygen supply due to OI. Apparently this one doctor (who cared for the patient profiled) holds this theory, but there is noting to back it up as of now anyway. I hope this might help to ease your mind.

The son of one of my best friends had a stroke during birth. She had/has no medical problems. It was described as a very rare event. He lived, but is severely disabled.

Link to comment
Share on other sites

I am sorry about the loss of your son. I know that there has been some links and speculation to decreased blood flow and oxygen to a fetus causing a miscarriage. I personally see where it is possible.

For your situation, it would seem like the drs. would have been able to tell if he was not getting enough oxygen after birth, and whether or not he showed signs after birth that oxygen consumption was compromised in utero.

I have heard about/seen young children that have had strokes etc. Sometimes it can be related to seizures (decreased O2/blood flow) and metabolic diseases (like MELAS/MERFF).

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...