The story of Penn

When I was 37 weeks along with my son, Penn River we had a sonogram to try and determine his size. I was expanding at record rate and there was some concern that he might be very big. After the first sono tech could not get an accurate reading of his femur length, she summoned another more experienced tech. She too got roughly the same size femur, 34 weeks, with a head circumfrence of 41 weeks. The demeaner of these two women was what shocked me. It seemed as though they thought something was wrong. It was my sixth sense kicking in. I sobbed the entire rest of the day, and called my physician. He assured us that he did not think anything was wrong, but that if Penn did have some genetic issue it would most likely be something like dwarfism. However, he assured us that my husband had short femurs and so most likely Penn would just be a shorter statured male if anything. So, when after 18 hours of labor propelled my son forth unto the world, the doctor was a little shocked. After 2 hours of waiting to see my son, my physician and a pediatrician came in the room and told us that Penn had a heart defect and the pediatrician told us that he appeared to have Down Syndrome, his nose was one of the major features suggesting so.

They told us that Penn would be transferred for further testing, etc.. to Methodist Childrens in San Antonio. They did ask us if we had a preference, they were just sending him.

Being sent to the NICU in San Antonio, and being in shock from the whole new world we just stepped into set us up to follow the path that was laid out before us. We met physicians in San Antonio that would be seeing him, mainly the cardiologists. We liked them, and they were in our insurance plan. They followed Penn and led us to the surgeon. Weeks before surgery, I began to feel very very bad about it. You know how women can be sometimes, well, I thought that's just how I was being. I had a premonition about the surgery, and my birthday which layed in between all the surgery options. My first fear was confirmed which was the fact that he did not have a good time during surgery.

The entire time we were at Methodist Childrens in San Antonio, which is NOT a dedicated children's hospital, but rather a "wing" of the hospital itself, we were treated as if we were "demanding" dictators. Physicians actually put that in the psych/social section of the progress notes. We were not heard when we wanted people washing their hands, when we actually went to the Chief Nursing Administrator and Infection Control about to no avail. I had the "medical director" actually tell me in a raised voice in front of other staff and my husband's boss's wife, that "you need to stop playing doctor, and be the parents, if you want to focus on things like "hand-washing" etc, be my guest, but allow us to make the medical decisions for your child, we would be happy to help arrange a transfer for you, but you're going to have to find a surgeon to take him on, and you're not going to find anyone that is going to want to take a child that has had complications from surgery." It was an ugly scene. She then refused to treat our son when it was her shift, and she ignored a pulmonary hemmorrhage all day because she didn't want to interact with us. At the end of the day it was an emergent reintubation in order to get his lung back up, this was after giving IPV treatments the previous day, and a pneumothorax that collapsed his other lung the day before that....all things that were ignored or done by the physicians as orders, on top of him having no nutrition, other than fluids. It was the biggest joke of a hospital I have ever, ever witnessed and it came with the most lack of professionalism I have ever known. I had a nurse actually say that Penn "got pissed off". Have you ever known a 3 month old child to get "pissed"? I haven't.

Unfortunately it was too late when we got him transferred. The tipping point was when the hematologist came in while I was away and told my husband while looking at all of the medications that Penn was on, "what are we doing here?" To which my husband responded, "you don't think he's going to make it?" The hema responded, "no, it's been too long." I came in after that physician left, and the cardiologist had come in and rasied hell. I told the cardiologist that if he had endured what our family had in the last five weeks he would leave his profession, and that our son had not even had nutrition for four days.

It was such a nightmare. I relive it over in my head every day and think that there has to be a reason that my husband and I witnessed all of the inadequacies of the system and staff that we did , and that there has to be a reason that our son suffered.

Hopefully, it's to help other families not make the same mistake we did by going to some place that is not specialized.