Landon's Story

Nothing about Landon entering the world went as expected. He was our 3rd baby in 3 1/2 years, and although he was the smallest of our 3 boys, he ended up being my first c-section because he would not fit around my pelvic bone. Things went pretty rough for me and I ended up being in surgery several hours requiring 2 units of blood and leaving with a drain hanging out of my side.. and I thought that was the end of the world!

The first indication that something was wrong was when Landon would latch on, but only suck once or twice before falling asleep. After involving every lactation consultant in the hospital, it was determined that he just wasn't ready to eat and would when he was ready. The next clue was when he didn't pass meconium within the first 2 days of life. His pediatrician warned that sometimes this can be indicative of a problem, but it was probably nothing.

We were discharged home after a routine 48 hour hospital stay. But once we were home things continued to be off. Landon was NEVER awake. I would set an alarm for every 3 hours to wake him up and feed him, and he still wouldn't stay awake to eat at all. He was also extremely bloated and passed stools in small, but constant "bursts." It wasn't until he began vomiting bile that I was finally convinced that something was very wrong, and we made a trip to the emergency room since it was the 4th of July and everything was closed.

The doctor working in the ER took an abdominal x-ray of Landon. It showed that his belly was very distended and full of gas, but no blockages were present. He almost didn't even admit him into the hospital! When he did, John and I overheard him telling the nurse something along the lines of "too many young children in the home, he's probably not getting the attention he needs. We will admit him and have the nurse feed him bottles every few hours and give him an IV since he's beginning to get dehydrated." I was frustrated to tears, and no one would listen to me! Why on earth would I waste the effort to pump every couple of hours if I was neglecting my child? Even in the hospital before we were discharged I kept trying to tell everyone that something was wrong and no one would listen. They all acted like I was the crazy!

So there went the plan. The nurse came in and attempted to feed Landon bottles of formula, but low and behold he would not eat. We also involved lactation consultants AGAIN because maybe he just wasn't taking to formula. Meanwhile, they drew a lab and it showed a lowered white blood cell count, and so he was started on antibiotics. Two days passed and nothing was changing, he was not waking up and he still wouldn't eat.

That was when we were transferred to our nearest Children's Hospital, 2 hours away. I rode up with Landon on the ambulance by myself. Everyone there was great right from the start, and finally someone took the time to listen to me. His nurse even offered to watch Landon while I ran down and grabbed a bite to eat. When I came back she handed him to me, and we both could tell something was wrong. He was flushed, but not pink or red, it was a strange purple color. She called the doctor in right away and she unsnapped Landon's top. I will never forget what happened next. His entire chest was black. "Get stats on him right away!" Several people came rushing in. "Call a code!"

They started performing CPR on Landon right away. I must have blacked out or fainted, because the next thing I knew I was sitting in a wheelchair in the conference room. Every 5 minutes they came in to tell me that they hadn't gotten him back, but they weren't giving up. I asked for the chaplain, and she rushed up right away. We started praying for Landon, and she went down to pray for him by the room. After 30 minutes the doctors started explaining that they were placing him on ECMO- a heart and lung bypass machine. At 35 minutes someone rushed in to say never mind, they had gotten him back.

Next we were in a very unsettling position. Landon was alive, but on pressors to make his heart beat and on a ventilator that was breathing for him. He was alive, but after 35 minutes, the prognosis was not good. A neurologist approached us about putting Landon in a study on forced hypothermia to try to reduce brain damage. He didn't say it directly, but he implied that in order for a child to be eligible for the study it must be assumed that they are brain dead. He left us to think on the matter while he went in and examined Landon. To everyone's surprise, he thanked us, but said Landon was not eligible for the study because during the examination he moved all of his extremities. That was the first of a lot of miracles.

Landon weaned off the pressors in just a day. He went off the ventilator in 2 days, and only required oxygen for 2 additional days before moving to room air. Although we were told repeatedly that it was not possible for him not to have severe brain damage, the neurology team kept admitting that they were surprised with how well he was doing. After 4 or 5 days it was almost amusing to see how they reacted when they came in to examine Landon. He did everything they were looking to see! He sucked, moved, opened his eyes and looked around the room, responded to sound, and all of his newborn reflexes were back! They would just look at each other, puzzled. On the following Tuesday they scheduled an MRI for Friday to assess the amount of brain damage. That was the first time they admitted it was possible that Landon had "dodged a bullet." The neurologist that had approached us about the hypothermia study added, "I can't explain it, but you are very lucky."

On Wednesday Landon moved out of the PICU back onto the hospital floor. He continued to recover well, but there was still one major question: why had this happened? They had done testing for EVERYTHING! EEGs, echocardiograms, testing for metabolic disorders, viruses- you name it! Everything kept coming back normal. The only clue was how well he had responded to the huge cocktail of antibiotics they had him on and several labs that hinted that he had an infection they were never able to find.

Every problem that could potentiality exist had been ruled out with two exceptions: Hirschsprung's Disease and Cystic Fibrosis. Both looked suspicious since Landon had not passed meconium at birth, but we were told neither pose an immediate threat and so they were the last tests to be done. Landon did not have Cystic Fibrosis, but a biopsy revealed that he did have Hirschsprung's Disease. They gave me a huge packet of information, and that's when I began learning about the dangers of enterocolitis- a potentially fatal infection in the colon associated with Hirschsprung's disease. Reading about what happens when enterocolitis is not treated sounded EXACTLY like what happened to Landon. I kept asking if that could have been what happened. They didn't give a definite answer of no, but they said it usually doesn't happen that fast.

Meanwhile, Landon went in for his MRI. Praise the Lord, he did not have ANY brain damage. I was told it was not possible for him not to be severely brain damaged, and he had NO brain damage! Our prayers were answered.

We were also transferred to the surgery floor of the hospital, and met doctors who were more experienced with Hirschsprung's Disease. They immediately contradicted what we were previously told- they were positive that Landon had developed enterocolitis and went into septic shock. They were sure that was why he had gone into cardiac arrest. They said although it is rare, it can and does happen that fast.
Although Landon was able to eat, he could not tolerate feeds. He was still distended and was vomiting bile. He was administered TPN through an IV for him to get the nutrition he needed, and his stomach was suctioned out. Although there is a one-step corrective surgery to remove the diseased portion of the colon with Hirschsprung's Disease, he was not healthy enough for that operation, so he went into surgery to get a colostomy. Further biopsies were also taken and it was concluded that it was only a short segment of his colon affected, which is the best type of Hirschsprung's disease to have, and comes with a good prognosis. The surgery was an instant cure, and within a week he was sent home on antibiotics, and besides the colostomy no one would ever guess anything out of the ordinary had ever happened. The colostomy care was difficult, but we got the hang of it within a week.

We went home and lived happily ever after.. well, almost.