"Well Being"

When I first created my blog, the main idea was to report my experiences and also to serve as a support network for other parents going through similar situations as myself(and my family). Turns out I came out to discover more than I bargained for... I have experienced flaws in the heath care system that are both alarming and aggravating. My very first diagnostic in California was also my first encounter to a sad truth of a cold heart breaking system called medicine. "Ms. Maia, your baby has renal agenesis and therefore is not going to survive!!", said the technician, "But we are here for you, for anything you may need- the mother is now our focus- we want your well being!". I am no longer at that clinic in California and I am sad to say I have never received a phone call from them checking back on my so called "well being". We decided as a family the best thing for me was to be seen at the high risk clinic of Winnie Palmer, as I have mentioned before, one of the best "mommy/baby" hospitals in the nation. As days went by, we discovered the well being of the mother may not really be at their interest as much. In my first visit, tests were taken and the diagnostic on Harlow's condition were exactly same as the ones done previously, leaving us with that same hopeless and anger tightness in the stomach kind of felling- we are getting pretty good used to it in fact! :( I knew some facts about all the abortion laws (Most states in the US- with the exception of 5 states-- prohibits abortion after the baby has reached fetal viability(the ability to survive outside the mother's womb) and in varying on states that happens usually between 24 to 26 weeks of pregnancy) but I asked about it anyways. In a Potter's baby case, there is absolutely no chances of survival (which surprises me that my baby is considered viable since she will most likely not live past an hour or so) as I sat in front of the doctor, I asked him once again.. "then why not? why have me suffer through this pain??" And with a nod he responded "I completely agree Ms. Maia- I am so sorry!!" I have been getting the "I'm so sorry" so often lately that I sometimes don't even acknowledge it. The second visit was even more eventful. The routine blood pressure and weight were taken by a nurse that, with my chart open in her hand asked me "how far along are you?", "32 weeks" I reply kind of knowing something bad was about to happen. "Oh Wow, you are sooo tiny!!"- I get this quite a bit and sometimes I tell people I'm four or five months pregnant instead of a eight months!... But the nurse, had my chart open, at the High Risk Clinic.. I would think she would be a little more careful, again, with my "well being". The doctor then came into the room and discharged me. I had so many questions and I wanted so many answers. I asked him again about inducing labor early, and once again his reply was pretty much what any other doctor has ever said to me.. "I completely agree Ms. Maia, there is no reason why we would "keep" you pregnant with a Potter's Syndrome baby, but it's the law."- I left there even more angry than I have even been through this whole process. If there is no reasons, no solutions and no way of keeping this baby alive, where does "well being of the mother" comes in place?? It is shown once again to me the flaws in the medical system. I am scared to ask the real question?- Are doctors really worried with my so called "well being" to fight a law they don't agree with(or say they don't agree with) it or are they just practicing medicine, careless with the humans true being?? My visit that day ended on a much sadder note for me. I wanted to find out the possibly of donating Harlow's organs that will be intact- such as her little heart... In my mind, I believed doctors would be stoked with the idea since we would be giving newborn babies opportunities of a normal life since my baby girl will never have that chance. My battled against the medical system has taken now a whole new level as the doctor didn't seemed to care much for my idea. I continue on, fighting both the laws and the medical system... through numerous phone calls, e-mails and an attempt to get Florida's Heath care on board with what really "well being" means to someone going through a difficult medical situation.

When I was married, I found myself living a double life... At home, I was Betty Crocker, cooking and fighting to save my marriage... at work I was Marlin Monroe, performing in rich parties.. hanging myself in ropes and doing what I love! The two never seemed to go well together. Now, once again, I find myself in a double life.. only this time it seems to hurt much more... I am pregnant, and barring a child at the same time. One minute I am constipated, having trouble sleeping, taking five or six Tums a day for my painful heartburn and losing my clothes to this growing belly... the next minute I am making calls to the funeral home, trying to figure out if it would be better barring or to cremate my little baby girl.

The church seems to think I should get a medal for not "aborting" a child- as they call it.. But we all Potter's syndrome family survival know that the end result is much less happy and preppy. A Potter's syndrome baby has never survived the diagnostic and therefore, it is really considered an abortion?? I continue to wonder if my "well being" is being taking in consideration at all when I have to live these 2 very separate lives due to an unlucky event... Continuing to be pregnant it is definitely taking a toll on me and I will try as far as I can to challenge the laws that apparently have never really asked a Potter's mother how she really feels...