JenniferTenney

This has been bothering me, so I figured I would get my thoughts out on this blog because I am not a doctor and these are just my thoughts. I am an attorney, and I never work in absolutes. There is very rarely a yes or no answer to anything, it is always a matter of argument with facts leaning towards one side or the other. I believe that medicine, especially with regard to the proper treatment of CDH is the same way ... or it should be. I am not an expert but I have read countless blogs now, everything I can get my hand on, and I watched Dr. Kays work his magic, and I believe the treatment of CDH is an art and hard and fast rules are to the detriment of the patient. I don't like that so many hospitals have a time limit for how long a baby can be on ECMO. I understand that there may come a point where it will be clear that the baby is not going to get better, but I do not think that a hospital can know that that point can be at 7 days or 10 days, period. Olivia, who was in the hospital with us, was on ECMO for almost a month. It took that long for her to get stabile, she needed that time. And now she is home and thriving with no long term apparent effects. Olivia's mom told me that one of the reasons she picked Shands was that a couple of other hospitals she investigated told her that Olivia could be on ECMO no longer than 2 weeks, period (one hospital said 1 week) ... Dr. Kay's answer to that question was "as long as it takes." Most important for our case, most hospitals will not allow a baby on ECMO before 34 weeks, period. Well, Dakota was 32 weeks and 5 days, but she was large for that premie status and she had a good lung volume, but she needed ECMO to get over a crash caused by an infection, and Dr. Kays gave her that chance. I thank God that no one told me that my baby didn't meet the guidelines so there was nothing they could do. I guess it is important to have guidelines but I think, in my humble opinion, it is so important to treat the baby and not adhere to such hard and fast rules. Each CDH baby is different ... we hear that phrase a million times! So treat them like they are different!!! We all love our surgeons and it is not fair or right to praise one above all others because there are great ones all over the country for CDH, so I do not mean to say that Dr. Kays is the only good doctor. But he is the doctor I experienced and I think he is doing what other good CDH doctors are doing around the country, and what all CDH doctors should be doing, treating the patient!!! Just my two cents.