Finally a local info on trisomy18. when my daughter was born 12 years ago info like this was hard to get. even the local general hospital was ill-informed. she was placed in scn (special care nursery) soon after birth for 2 weeks. cromosomal studies done, confirmed.
the doc wasn't tactful at all. my wife broke down and cried. i managed to stay sober. but one comment i will never forget. cruel remark made by the paed. "child like this normally will die within one month. none survived more than a year in malaysia. we can't do anything to her. we recommend you to bring her back (to die) with her family."
we didnt say a thing. brought her back and vowed to prove the doctor wrong. we did. it was a tough fight. we fought illness after illness. all without doctors. credit to this incredibly strong child.
after 7 years again we had to bring her for a checkup to enable her to be registered with social service dept. again the doctor let her down. upon asking what can be done to improve the child's quality of life, the doc replied that she doesnt have a clue and asked me back what she needed.
it has been 12 years. the child written-off by the paed is still alive and well. alhamdulillah. although she is a total dependent, we love her so much. she cant talk, sit or walk. but she can cry and has the sweetest smile that is priceless that no doctors in the world can take away.
October 14, 2010 8:13 AM
Thank you for your sharing. it truly enlighten me regarding this issue from the perspective of patient relative.. I hope that you will still strong and be patient in undergone this test..
For your information, the article that I wrote is based on the case of trisomy 18 that I see when I’m attached to one of the pediatrician specialize in genetic in our hospital, HUSM.
The case actually was published by his team few years back and I quote some info from their publication as well.
Reading your comment reminds me regarding my way of thinking before joining that professor's clinic.
I used to think that Edward syndrome patient wont survive and their prognosis is very bad. I also used to down grading the role of resuscitation in this kind of patient
But he truly changes my way of thinking. I can say that he fight very hard for the right of Syndromic patient. for him, every child has the right to live even just for a moment. we, as a doctor need to be there and fight together with the patient.
However, when the prognosis is really bad, therefore a good discussion needs to be conducted between physician and relative so that both party will understand the benefit and harm behind any decision.
Thanks again for the sharing. may her smile continue to shine the life of both you and your wife. May Allah bless you always sir.