This is a very accurate experience of medical pressures on families with a kiddo that has a Trisomy condition. My wish is that the medical community would continue their life long professional learning, remove the ignorance that is so prevalent in their practices against Trisomy kiddos by educating themselves in the communities of Trisomy families that have supportive medical backing. This would be a monumental shift in ideology, especially for some medical staff that were charged with the care of my daughter, Hailey Rayelle Saunders. The genetics test that was performed was not done to basic standards so that an accurate result would be obtained. They only tested half of the cells required for an accurate diagnosis. The medical staff continually said that Hailey did not present as a child with full Trisomy 13, which she was not in the end. Hailey did not have the three characteristics of the head that is required for this diagnosis, which results in a diagnosis of Mosaic or Partial Trisomy 13. When the docs @ RUH would hear of a person with Trisomy living they would always say oh, they are probably partial as the unknown rational for the persons medical success. Hailey was strong, Hailey was a fighter, Hailey was not as the medical staff presented her complete prognosis to be, Hailey had a very good chance to still have been with me and having a good quality of life which was not for the Docs to rule what that should be like. Just because someone is chromosomally enhanced does not mean they are in pain and Hailey was not until the very end, but was obviously put on fentanyl and morphine to make her comfortable, after the medical community failed to provide proactive supports, contradicted themselves, failed us by dividing and conquer us and didnt do right by Hailey which was a comment from a very well informed person with significant involvement and experience with this issue. Im not saying that they didnt provide care, but they didnt provide the individualized care that was specific to Haileys situation, nor do as we asked them to liaison with other CDN or American medical staff that have expertise with Trisomy. They said they didnt have the experience and they did not network, nor listen to key observations that I made (and was accurate in that her bowel had burst but was told it hadnt, the burst was confirmed 2 days later on a CT scan. I was told by the lead intensivist peds doc to listen as they were the doctor, had 8 yrs med training, 3 yrs intensivist and 6 yrs experience on the floor- power tripping on a dad who was in a very vulnerable situation) nor provide the infection prevention that we asked for (continued isolation as it went against hospital policy - [what hospital policy permits putting infants at harm?])due to her fragile immune system. They actually told us that there was no evidence to prove that kiddos with Trisomy have immune system challenges, but when Hailey got the influenza virus that started the downward spiral they said the opposite. They also denied Hailey VSD closure due to her Trisomy 13 diagnosis as two other kids with T13 or 18 had successful cardiac surgeries in the previous few years, but died within a year or so from what they told us. The hospitals that refused the VSD closure were Edmonton, Ab. Stollery Childrens Hospital which is the cardiac center in Western Canada, Vancouver and Toronto Sick Kids Hospital followed suit, but Halifax, NS had just performed a heart surgery on a kiddo with T13 or 18 three months prior. This story hits home hard and is very accurate. I just wish the outcome would have been the same for my baby girl and I could have been walking in similar shoes as this dad does! Good for this family and all the others who have stood up against inaccurate, biased, and very outdated medical attitudes. There is a SOFT conference, which is the same one that is referenced to in this article, this coming July in Salt Lake City. Medical staff in Canada; please go to enlighten your outdated and undermining practices so that you can play a genuine role in the family based medicine philosophy that is apart of the practice that is purportedly followed. If not for that, please do it for the next family that entrusts the care of their medically fragile kiddo to you!
Posted on: Sun, 26 Oct 2014 06:32:16 +0000
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