and I should mention, even as adults, sometimes diagnosis of this disease can unfortunately take a long time. Symptoms of PH can mimic MANY other things and PH is often diagnosed after most other things have been excluded. So please know that this diagnosis can take a while to come by, especially if the physician isn't familiar with it or doesn't order specific tests.
hi,can i first of all thankyou for your kind words and also for your help and advice,it truely does mean a lot when somebody takes time out to offer help and support..thats why i value medhelp so much..so again,thankyou.
my daughter was born prematurely..33 wks gestation,and although many problems were occuring in her general developement..other than those signs of prematurity..doctors could never give us answers as they just didnt know them..or do enough to find them. my daughter had a rare syndrome.22q11.2 which wasnt found till just before we lost her,and my daughter now also has the same syndrome as it is genetic..my daughter now is 18 and thank god she doesnt have the heart complications related but she still has other conditions which i worry over every single day...
i feel so let down over my daughter i lost,because if i knew back then what i know now...all the signs were there,i was just 17 when i had her and 21 when i lost her..i was naieve. i put my trust in doctors,as people should,but i was fobbed off,because pulmonary hypertension in children is so rare,it was overlooked..my daughter also suffered with her bowels..hirshbrungs disease..and she suffered..but it wasnt found till her post mortem. i could go on forever about what should of and could of been done,it still haunts me now,nobody was held accountable,and if you knew my story then somebody should of.. but i lost her in 1996,and my life has never been the same since.. her heart was 3 times the size it should of been in her post mortem..she was only 3yrs and 9 months..one doctor told us she was pigeon chested... that is just one detail of her endurance and there mistakes.
Listen, I just want to say that you should not blame yourself. I'm not going to pretend to understand the pain you have endured and the guilt that goes with it. I am a mom too and I cannot fathom losing one of my girls. I am a nurse, and while I know people should generally trust their doctors, I have learned through my experiences that often times the patients and their families must be advocates for their health and NOT to blindly trust the medical system. As was your case, and I am so sorry that the doctors didn't diagnose her in time.
Hindsight is 20/20, as you know, and there is no way you could have prevented the disease. Back in 1996, I'm not sure what kind of treatments would have been available for her either. Also, you were so young and being naive goes with the territory, there's just no way around that. I hope you can forgive yourself, I am sure your daughter would not want you to be suffering so many years later. I hope that doesn't sound hollow, I am being sincere in that you can help others with your story, to encourage others to continue to seek answers if their gut is telling them something is wrong or if doctors keep dismissing problems. The fact nobody was held accountable is disgraceful on the medical community that let you and your daughter down. I encourage you to keep going, keep spreading the word, and to honour your daughter's memory by helping others who are learning to become their own health advocates.
All the best for you and your family. Being a mom is hard work and the worry and guilt seem to go hand in hand with the job. But in this case, this was really not your fault and I hoped these doctors and everyone involved in your daughter's case have learned something from it and this situation will NEVER happen again to another family.
hi,hindsight is a wonderful thing..i know that,but i do not whatsoever blame myself..i blame myself in the sense if i knew back then what i know now...i do not blame myself one bit..i blame the doctors...i blame myself for not questioning the doctors...i do not blame myself...i was so young,i blame the doctors.. your so right..i never want this to happen to anyone else..EVER. but my daughter suffered. she so suffered ye know...my story is long and one that i find difficult talking about..believe it or not saying this is just a tiny bit of the equation.... it pisses me off..she suffered needlessly..and i was in the alderhey scandal..3 times i buried her...forgive me for being....well...just being...
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