It's Not Pyloric Stenosis!

Jack and I arrived at Primary Children's Hospital October 18, 2010 via Ambulance. By this time, Jack weighed 4lbs 90z (remember, he was 5lbs 13 oz when he was born). As we entered the E.R, the nurse began taking Jack's vitals and checking and double checking everything that was done at the hospital in Cedar City. The first thing she noticed was Jack's color. She took one look at Jack, gently rubbed the top of his head to feel his fontanel (which was sunken) and said, "this baby is SEVERELY dehydrated!" As she continued her evaluation, she came upon Jack's IV and was dumbfounded as to why they had placed it in his arm. She explained that that is a horrible place for an IV in a baby and removed it and placed a new one in his foot.

As the nurse left the room to get more supplies, the E.R. Doctor walked in and explained to me that they were in the process of receiving all of Jack's records from Cedar City. As she was explaining this, she checked the computer to see if they had arrived and gasped! She immediately began thinking aloud saying..."why did they do this?....why did they do that?...well, we're going to have to reverse the antibiotic they gave him...why did they give him that particular antibiotic...you never give that to a baby!" She went on to continue that Jack did not have a bladder infection, but that he was severely dehydrated and explained that the Surgical Nurse Practitioner would be arriving shortly to explain Jack's situation. She ordered more tests and looked me in the eye and assured me that they were going to do everything in their power to save little Jack!

Being in the E.R. at Primary's was so comforting. Everyone was so competent! No one was making fun of the situation or behaving rudely or incompetently...it was amazing! It was such a relief to be there and I knew we were in good hands.

The nurse came back into the room and told me we needed to insert an Anderson Ng Tube down Jack's nose to begin decompressing his stomach. An Anderson Ng Tube is a tube that is inserted through the nose down to the stomach and is designed to continuously empty the contents of the stomach. Soon after, the Surgical Nurse Practitioner arrived to speak with me. She politely introduced herself, sat down, and explained that Jack did not have Pyloric Stenosis. Rather, a very common normality in Down Syndrome children called Duodenal Atresia. Duodenal Atresia is an intestinal blockage that needs to be repaired through surgery. She was very nice and went on to explain that this is a very common surgery and that there was no need to worry because Jack was in good hands.

At this point, Jack had an NG Tube in his nose as well as oxygen and an IV in his foot to repair his electrolyte levels and get him hydrated. It was horrible to see Jack with all of these tubes, but somehow I knew we were finally where Jack needed to be and I found much comfort in that.

They walked us up to the 4th floor of the hospital...room 4320. Little did I know that room would become our home for the next 44 days.

I hadn't showered in almost 48 hours and I was extremely engorged from not nursing or pumping and exhausted from all of the stress and fatigue. The nurse showed me the shower room, gave me some towels, and showed me where I could go to pump and where to put the breast milk when finished. It had been a long day and I was tired!!

The next morning, the Residents, Nurse Practitioners, and Medical Students arrived to do their evaluation. This became a usual morning ritual. I would be awoken every morning by this team and they were always eager to answer any questions I would have. That morning, they explained that the Surgeon would be in later that afternoon to speak with me about Jack and explain his surgery.

I awaited the Surgeons arrival all day. He finally walked into our room that afternoon, introduced himself and said: "First, I want you to tell me what you've been told and then I will explain to you what is going on..."

I explained everything about the vomiting, the weight loss, the so-called reflux, the visit to the E.R. in Cedar City, and the Pyloric Stenosis diagnosis.

After all of my explaining, he looked me in the eye and said..."It's not Pyloric Stenosis...it's Duodenal Atresia. I spoke with your Pediatrician yesterday and he explained to me that he was sending a Down Syndrome baby with Pyloric Stenosis that needed to be operated on. I said to your Pediatrician that that is IMPOSSIBLE!! There are three major things you look for in Down Syndrome children and THIS IS TEXTBOOK! He doesn't have Pyloric Stenosis, he has Duodenal Atresia."

He went on to explain to me that Jack's small intestines were not even connected to the lower part of his stomach (the duodenum) and Jack had gone without nutrition for 2 weeks. He had been starving for 2 weeks! This is why Jack was vomiting...nothing could move through andthat is why they placed the Ng tube down his nose. They needed to keep it there to continuously pump the bile from his stomach until after his surgery. He continued to explain that Jack's Electrolyte levels were the 2nd worst they had ever seen come through the E.R. He told me that when the "dust settles" I needed to phone my Pediatrician and schedule a meeting with him to make sure he knew what he had done. And then he said, "of course, there are people who would be willing to take your money and would do that for you!"

I stood there, next to Jack's crib, looked at the Surgeon, looked at Jack with all of his tubes and couldn't believe what he was telling me. I knew something was severely wrong! All of those days I spent trying to get Jack to eat, trying to keep him from vomiting, calling the Pediatrician worried and sick about all of his weight loss and inability to keep any food down and the Pediatrician kept reassuring me that it was nothing...just reflux! I was so angry!!! How could a Pediatrician, E.R. Doctor, E.R. nurse not recognize that Jack was dehydrated...severely dehydrated?! Shame on my Doctor!!! I hadn't gone to school all of those years and wasn't professionally trained to know these symptoms. How was it he could look me in the eye and tell me that "he was trained to know what to look for and know what to do with Down Syndrome children." How could he even call himself a Doctor? I was outraged!!!

Then, the surgeon told me that usually babies born with Down Syndrome are immediately sent to the NICU. Even if the diagnosis isn't positive, they are sent to the NICU where they begin testing for thyroid, heart problems, intestinal problems, etc. He said these babies are usually operated on within the first 2-3 days of life because of the fatal consequences if not treated!

What were the nurses and Doctors thinking in Cedar City? They were clueless! The amniotic fluid that had been pumped from Jack's stomach, when he was born, was the first sign of the Duodenal Atresia! I couldn't believe they sent me home!

Because Jack was so severely dehydrated, the Surgeon would not operate on Jack until he was hydrated and "well." Getting him well would require a Central Line (PICC Line) to be placed through his arm. Through this line he would be fed TPN (total parent nutrition) and Lipids. On top of this, he would continue to be given his electrolytes to bring up his sodium and potassium levels. Once Jack was "well" he would operate.

I asked him what kind of plans I should make for my other children in Cedar City, which was 4 hours south of Primary Childrens Hospital. I explained that my husband was in Chicago for 6 more weeks and my other three children were in Cedar City. I wanted to know how long I should expect to be there and he explained that Jack would probably be there for a minimum of 6 weeks.

He asked if I had any other questions, I didn't. I needed to call Devon and explain Jack's situation and I needed another good cry!

He left. I looked at my mom. Looked at Jack. Began to cry and under my breath said, "Dumb Ass Doctor."

10 days later, Jack was escorted down to the 2nd floor for what would be the first of two surgeries...