Vayda
This is a personal story shared by a family who lost a child to Long-Chain Hydroxyacyl-CoA Dehydrogenase Deficiency (LCHAD).
| Vayda Irene Oliver,[Porochnavy]. Born Aug 6, 2006 in Vancouver Women's Hospital. She was 5 weeks early, wt 5lbs1oz. perfectly healthy. Our bundle of joy and went home 5 days later. Until the fatal quick onset of aggitation, hypothermia, moaning turning into a purr, unresponsiveness while driving to Kelowna. We were allready speeding to the Merritt, B.C.hospital. Arriving at approx. 10:20. She took her last gurgley breath running into the emergency department. The health care staff were right there at the entrance and the physician commenced CPR. All her formula came up from her last feed 3hrs and 20min ago. We all ran to this room and they actively hooked her up and intubated her. We watched her go from white to grey. She took 1 more little breath and listened to herheart beat go lower and lower not responding to the cardiac protocall medications. She died, announced at 11:05 Sept 2, 2006. All staff went silent and shocked to the disbelief of what occurred with no answers. SIDS? I have never heard of this and it took sometime to absorb. We now
know she had the common subtype of LCHAD and has seen before. Which
now concludes if all the Newborn screening blood testing would have
been done with the
rest of her blood work, this LCHAD would have been detected. She still
would be alive, and treatment started. We must include this Newborn screening blood test in every province. Why does every province in Canada vary in blood screening? Newborns are dying because it varies with what type of screening is being done and where. Go on line to savebabiescanada.org to see the list of provincial blood screening. The website also gives more family stories and litiature documenting that there is evidence for the necsissity to include this Newborn screening within Canada.It would change our results and newborns would survive. The cost is minute when it comes to the outcome and the life of a child, $50 please lets save our babies. Ours died unexpectedly and I do not wish this for any other family or baby to experience. We miss our little angel......Vayda nickname Betamax Click here to visit Vayda's website: Vayda Oliver Porochnavy (2006 - 2006). |
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