A 10 year old girl living with Heterotaxy - Polysplenia... Join me in my quest to find answers to my questions as I learn about heterotaxy.
Tuesday, July 14, 2009
Taking a Break
I am sorry that I have not posted but I am taking a break for now. The kids keep me busy and it has been one thing after another. I will write about next month.
2 comments:
Anonymous
said...
Hi, I just stumbled on your blog. I just wanted to say hello and let you know that I'm like your daughter. I have polysplenia as well. Heterotaxy with right sided isomerism and PCD (lung, sinus and ear problems).
I just thought that it might help you to know that after a difficult childhood living with pneumonia, bronchitis, ear problems, needing a pacemaker and all sorts of other challenges, I'm now forty years old with two children of my own and although I still have difficult health, I walk several hours in the forest with my dogs most days and live a fairly normal life.
So, hang in there. There's plenty to read about how many people born with this condition don't make it but the truth is, that's not the whole story. I'm proof and your daughters already gotten past the most dangerous times. Best of luck to all of you :)
I know it feels like there's no one else out there, it's a very rare disease, but we're around!
Hi, I also just stumpled onto your blog and have been wiping tears from my eyes, just knowing that I now may have answers. My little girl is nearly 9 months old and we found out about her Heterotaxy while she was still in the womb. She has Heterotaxy with Left-sided isomerism. She has a right-sided stomach, interrupted IVC with azygos continuation and midline liver. Since birth she has had ultrasounds on her abdomen as well as her brain (the isomerism can also impact on the lobes of the brain), she also had an x-ray with barium feed when she was 2 days old to check bowel function and she has regular ecg's with her cardiologist to check for any heart problems. As yet, all of these tests have shown she is in the clear and everything has normal function. Except .. she is ALWAYS sick. When they did her abdominal scan, they checked the spleen and thought they saw just the 1. They were however, not certain. I was told not to worry about it though as the only concern was if she was asplenic. Since birth my daughter Amali has constantly had a cold or flu and just last month one of these colds developed into bronchialitis. I had stopped taking her to the doctor as I was feeling like a hypochondriac Mum, but as a Mum I have also been sure that there must be something else going on.
Thank you so much for your blog. I now feel as though I finally may have an answer and am going back to the doctor to have them check her more thoroughly for polysplenia.
I wish you and your wonderful family all the best and can only hope that my little girl will grow up to be as beautiful and as strong as yours. THANK YOU!
2 comments:
Hi, I just stumbled on your blog. I just wanted to say hello and let you know that I'm like your daughter. I have polysplenia as well. Heterotaxy with right sided isomerism and PCD (lung, sinus and ear problems).
I just thought that it might help you to know that after a difficult childhood living with pneumonia, bronchitis, ear problems, needing a pacemaker and all sorts of other challenges, I'm now forty years old with two children of my own and although I still have difficult health, I walk several hours in the forest with my dogs most days and live a fairly normal life.
So, hang in there. There's plenty to read about how many people born with this condition don't make it but the truth is, that's not the whole story. I'm proof and your daughters already gotten past the most dangerous times. Best of luck to all of you :)
I know it feels like there's no one else out there, it's a very rare disease, but we're around!
Hi, I also just stumpled onto your blog and have been wiping tears from my eyes, just knowing that I now may have answers. My little girl is nearly 9 months old and we found out about her Heterotaxy while she was still in the womb. She has Heterotaxy with Left-sided isomerism. She has a right-sided stomach, interrupted IVC with azygos continuation and midline liver. Since birth she has had ultrasounds on her abdomen as well as her brain (the isomerism can also impact on the lobes of the brain), she also had an x-ray with barium feed when she was 2 days old to check bowel function and she has regular ecg's with her cardiologist to check for any heart problems. As yet, all of these tests have shown she is in the clear and everything has normal function.
Except .. she is ALWAYS sick. When they did her abdominal scan, they checked the spleen and thought they saw just the 1. They were however, not certain. I was told not to worry about it though as the only concern was if she was asplenic.
Since birth my daughter Amali has constantly had a cold or flu and just last month one of these colds developed into bronchialitis. I had stopped taking her to the doctor as I was feeling like a hypochondriac Mum, but as a Mum I have also been sure that there must be something else going on.
Thank you so much for your blog. I now feel as though I finally may have an answer and am going back to the doctor to have them check her more thoroughly for polysplenia.
I wish you and your wonderful family all the best and can only hope that my little girl will grow up to be as beautiful and as strong as yours.
THANK YOU!
Post a Comment