NOAH's Story

Katy - Noah's Mom
January 2005

Noah was delivered at thirty five weeks after a very turbulent pregnancy. I was on bed rest from sixteen weeks, premature rupture of membranes at thirty two weeks. Noah weighed three pounds even and was a whopping fifteen inches long at birth. He was beautiful, nursed well, and held his body temperature well, so after six days in the hospital they sent us home.

From the start we noticed problems with him and very odd behaviors. He would stay awake for nine to ten hours at a time at only a couple weeks old, he acted as if a motor was running constantly. Several trips were made to the E.R. to have him sedated to sleep. He also rubbed his feet together constantly even while sleeping. By the time he was three months old we had made a total of seventeen E.R. visits, and way too many visits to his pediatrician to count. The E.R. would treat the symptoms and refer us back to our Ped. Who would tell us he was just neurotic. We were so desperate we even took him to a Podiatrist to have his feet checked for fungal infections, because he rubbed them constantly. He always had to have shoes on them because he would rub them until they were raw & bleeding. He also would always scream if you laid him down.

At four months of age Noah began retracting and wheezing severely, breathing treatments never brought any relief to his symptoms, nor did any medication for asthma we tried. Noah would retract so bad that his rib cage was bruised on the outside for what seems now like forever. The oddest thing was that when he would wheeze his O2 level was always over 98% and the medications they used for the treatments caused his heart rate to accelerate too high, it became a viscous cycle. The pediatrician finally referred us to a Pulmonary Dr. who never figured anything out either and said his symptoms were concerning but, since his stats were always so good he would probably outgrow it, and that he reacted so overtly to the medications he was better off with the symptoms then the treatments for the symptoms.

By then as parents we felt defeated. We felt so helpless, Noah was our 3rd child and we had done everything the same with him as the other children and we just couldn’t bring ourselves to believe like the Dr.s wanted us to think that there was nothing wrong with him but bad behavior. We continually were told it was behavioral; we heard that a lot over his life time.

Noah never really was comfortable being held. It was as if he were overly sensitive to everything. To nurse him I had to prop him up on pillows and dare not move or he would go into a terrible crying spell. By 5 months old all you would have to say was “Night-night baby”, and he would scream. By the time he was 10 months old I was lying to everyone we knew that he was sleeping through the night because I was so tired of people saying he was just spoiled or strong willed.

I decided to wean Noah of the breast at 13 months of age, by 14 months of age Noah began vomiting every time he was laid down and was suffering from severe diarrhea and weight loss. Still no matter how much we pleaded with our ped we never got any where but, frustrated. Noah’s symptoms continued to worsen over time. By 18 months of age, I would have about sold my soul for a full nights rest or a day without changing on average 10 diapers, and washing bed clothes. At this time our family had decided to intervene and show us that he was just spoiled and that he could be broken. He could be taught to behave nicely, he could be taught to sleep through the night, he could be taught to not throw up every time you laid him down.

That intervention was very short lived days after turning 18 months old Noah began vomiting blood. After a trip to emergency, referrals, and every diagnostic test for GI symptoms was preformed. Noah was finally diagnosed with severe silent gastro intestinal reflux, bleeding lesions in the esophagus, and motility problems. Noah was also diagnosed failure to thrive and began months of extensive testing and treatment of his symptoms. Immediately we began running into problems with the reflux medications prescribed for him. If his eyes weren’t crossing and he went a day without some strange facial ticks it was another day closer to resolving his problems. He suffered and struggled with the medications and diet changes for months and months. Noah’s body refused to accept the medications and diet modifications we were giving to him. Noah’s blood work was always way off. The strangest being his IgG anti-gliaden (found in people with Celiac’s) was always over 100. (Normal range being around 20) However Noah never tested positive for Celiac’s disease at any time over the course of almost 3 years.

Just shy of Noah’s 3rd birthday we decided the only way to get his esophageal lesions under control was to have the Nissen Fundoplication surgery. It was performed, laparoscopically, the summer before he turned three years old. His recovery was typical of most children, problems with initial gagging and retching, lower nutrition intake, dehydration, and dumping syndrome. Three months after the procedure with steady weight loss we choose to have a G-tube inserted for nutritional supplementation. Things began to steady out for Noah and he began to hold his weight, for a short time. The following February Noah began having terrible pains in his chest, along with weight loss, and little tolerance to the tube feedings. Noah would tell us his heart was black and that he needed to go to the Dr.s to get a new blue heart so he could feel better. He would also wake up crying at night begging us to ask Jesus to move out of his heart because he was making it hurt. It took us about 3 weeks of complete persistence to get the Surgeon and GI to agree to perform another endoscopy to check the status of his Nissen wrap. By that time I had learned to be very aggressive with the Dr.s because of going so long with no one listening to us. After a lot of hemming and hawing both the surgeon and GI Dr. came out of that lab with apologies on their tongues. Noah’s wrap had slipped and was sliding up and down in the esophagus. Less than a week later Noah was admitted into the hospital for his second Nissen fundoplication surgery, this time it had to be preformed as an open vs laparoscopic.

Immediately after the surgery we noticed something seemed terribly wrong with him. We were assured over and over that we were just worried about him because he was having more pain the second time around and that Noah would feel better if we took him home. Five days after his second surgery home we went for less then 24 hours. He was rushed back into the hospital with severe fluid retention, inability to swallow his own saliva, and total malnutrition. After hurried testing and lots of questions the surgeons found that some how when the hiatal hernia was being repaired the stitches had been ran through the vagal nerve thus causing complete paralysis of his stomach along with swelled fusion of the upper esophagus. Noah was taken back in to surgery about 24 hours after we had taken him home. Many hours later Noah came out of surgery after a complete redo of his Nissen, a pyloroplasty to aid in the emptying of his paralyzed stomach, yet another G-tube site, a NJ tube for drainage during what would turn out to be a very long recovery, and also a PICC line for administering total nutrition thru his blood stream to allow the stomach and esophagus to rest and recover. Forty-five days after being readmitted into the hospital for his 3rd Nissen Fundoplication surgery we were able to bring him home.

Since that surgery Noah has had an uphill battle to keep his head above water, both with managing his pain and his nutrition. He has been from G-tube feeding to J-tube feeding, and ultimately wound back on TPN with a Central Line placed in his chest during the year following his 3rd surgery. We will never know exactly what went wrong with his 2nd surgery; all we know is that it has changed his life completely. Noah has suffered with pretty much all of the side effects that come with GERD and Nissen Fundoplications, ear infections, lack of repressurization of the ear drums, complete loss of tooth enamel, chronic cough, sinus infections, reactive airway disease, rapid heart beat associated with pain, decaying of the back teeth so badly the will need to be removed, sleep disturbances, (Noah is now 5 years old and still has yet to sleep a night through unless medicated), chronic loose stools, dumping syndrome, failure to thrive, weight loss, feeding problems, dysphasia, speech delays and problems, behavioral issues, emotional outbursts, aggressive responses to pain, mild sleep apnea, chronic illness, monthly impacted sinus’s, blood stream infections, plus many more problems.

Over the past 2 years we have been very cautious when it comes to any GI treatment for our son. We have sought out treatment for his chronic pain, thru alternative treatments. About a year ago we were desperate for a much deserved break for Noah and ourselves. We choose to have him medicated with a mild mood altering drug. It was out of desperation and fear of over treating his GI problems. We choose to take him off of the medication about 3 months ago. Almost immediately we noticed a change for the worse in him. His pain came back, his dysphasia worsened, and his chest pains returned stronger than ever, along with the rapid heartbeat. We knew putting him back on the medication was not an option. We have spent an entire year keeping him medicated to give him a break from medical procedures and the medication he was taken is not a “safe” long term alternative for anyone. However, we did not expect for his symptoms to come back much at all, let alone so quickly. We knew that it meant we were left with really no other choice but, to seek surgical treatment for his symptoms after an endoscopy showed weak areas in the Nissen wrap. His GERD symptoms came back as well, along with the sleeplessness, and slowly but, surely the behavior changes also began to rear their ugly head. He is to start kindergarten again next year after a failed attempt at it this year. We are hopeful with this 4th surgery to get a 20% improvement of life quality for our son. To some 20% may seem like so little but, for us it means the world. This surgery may not change much for him in terms of controlling his reflux, and it will be a very long recovery for him something both he and we as his parents fear. The procedure will be unlike any he has had before. It will be of course an open procedure with an upper chest approach; the surgeon will have to go in behind his heart. Reason being if the surgery was to be reattempted as an open abdominal approach his chance for uncontrolled bleeding is way too high to even consider attempting it, the area has been insulted far too many times.

Through all of the above Nissen surgeries it has failed each and every time to control Noah’s reflux well enough for him to not need anti-reflux medications. At this time all we can do is trust. Trust the Lord above that he indeed has a plan for our son, trust the GI Dr.s who have worked endless hours to keep our son alive and well, listened to all of our concerns, and answered each and everyone of our questions to the best of their ability, trust the surgeons who will attempt a very difficult 4th Nissen procedure, and trust ourselves as his parents that we are making the best decision for our son. Never in our life time had we ever expected to endure what he has been through. To watch our son go through what he has been has been very humbling to us as parents and humans alike. It is our wish to be constant advocates of increasing the awareness of the damaging effects of untreated GERD and the impact that the treatments can have on a child.