It's been a month now since Mieko passed away and we miss her all the time. We've been comforted by the many cards, e-mails, and guestbook posts. We're still in awe of how many people Mieko touched during her four and a half years.
We have learned some new information from Mieko's geneticist. We had chromosome tests done after her death, which revealed she had 70-79% trisomic cells in her skin, lung, and heart tissue. This means at the time of the testing she had mosaic Trisomy 18. She had been diagnosed prenatally with full Trisomy 18 . The geneticist told it's possible she always had a mosaic makeup but that not enough cells were tested during the amnio or it may be she shed some of the trisomic cells as she grew. We don't think this knowledge would have changed her care, but we want to share this information if it may help others.
We know of other families who've been denied surgery or other care because of the poor prognosis for full Trisomy 18. What we've learned through research shared by our geneticist and in discussion with other families is that no one can predict how a child will do with either a mosaic or a full Trisomy diagnosis. Each child is unique and the severity can vary widely. In fact, a 2007 study found no correlation between the percentage of trisomic cells and physical and intellectual development. There are many children who do not live long with T18, but we also recently learned of a 52 year old woman in Florida with both Trisomy 17 and 13.
Mieko had wonderful care here in the Twin Cities. Though we were advised of the worst possible scenarios, she was treated like any other special needs child. We hope that other families dealing with Trisomy diagnoses will be treated with respect and dignity as well. We are always available to talk about our experiences to help another child and family.
We will have to wait several more weeks for another set of test results on her heart and lungs. We're hoping the results may shed some light on why her pulmonary hypertension increased and ultimately caused her heart to fail. Again, we hope this information may help other families since pulmonary hypertension is such a difficult condition to treat. It may also give us some closure, since Mieko's severe heart and lung trouble seemed very sudden.
I have posted a short video of the ballooon release at the SOFT conference and a slide show of Mieko's most recent pictures. You can find them on her youtube channel:
http://www.youtube.com/trisomyvoices
I plan on editing more videos and will let you know when they're available. Though it's difficult knowing there is only so much video and only so many photos, it helps us to share with others.
Thanks again to everyone who continues to be there for us on this journey.
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