Day 5: Awareness in the Medical Community

Friday, February 10^th

Topic: Why is there a need for greater awareness in the medical community? Explain a situation where a clinician did not understand the impact of tube feeding. (The goal here is to point out that awareness is needed among all audiences. Certainly there are clinicians who are well versed and expert in this area however; there is a need for basic knowledge among a wider range of medical professionals.)

Feeding tube awareness among the medical community is important because sometimes physicians do not see the big picture when it comes to learning to eat. While this process is natural for most children to learn. Others find learning to eat nearly impossible. Why? Because 31 facial muscles and 6 cranial nerves are required to produce each swallow.

Are feeding problems physical, psychological, family, functional, or disability related disorders? Feeding problems impact the whole child, at the cognitive, physical, and emotional levels. Additionally, the family is also affected because the parents have to deal with and siblings are marred by the gagging, retching, choking, and battles with every meal.

Very few within the medical community understand the pain and strain families face when a child has a functional feeding disorder. Few understand complex and frustrating process required in getting unwilling children to eat, or the complex interdisciplinary team required. When a child truly is terrified to eat parents must employ the pediatrician, nutritionist, occupational therapists, psychologists, speech and feeding therapists who are also trained to handle and work with oral-motor/sensory/behavioral/and medical issues, additionally the team may require social workers to coordinate the team, and a nurse practitioner.

Why such a complex team to hopefully teach a child to eat? Eating is an essential skill that is required survival and proper development. If the child does not learn to eat and gain proper nutrition development delays will increase, decreasing the chances of living a normal life. Additionally, parents become more worried and the child becomes more uncomfortable.

The cost of a child with a feeding tube is expensive, and there are very limited resources for families of children with feeding issues.

The approximate cost of the average child with a feeding tube and specialty formula can run upwards of $40,000 or more if there are complex medical needs. The most common reasons to have a feeding tube placed include congenital birth defects of the mouth, stomach, trachea, or esophagus, swallowing disorders, breathing/swallowing coordination problems, aspiration issues, or lack of adequate nutritional intake. These may cause short-term or permanent feeding tube placement. The goal is to increase the nutritional intake to a healthy level to improve the overall quality of life. Finally, the determination of the length of time will be determined by level of medical needs.

One situation we ran into with an ER team and the lack understanding regarding our son and g-tube issues. He had g-tube accidently pulled out. We had been informed by the GI team (just over a 90 minute drive) that if his tube had ever come out there was a short window of time to get the feeding tube replaced. As soon as we realized his feeding tube was missing we found his button, called the peds office. Unable to fit us in, we were instructed to take him to the ER for quicker replacement.

Upon registration we let the ER staff know what was going on, including that our son had a latex allergy. Finally, two hours later (well past the 30 minute window) we were being called back to a room. By this point his stoma was almost closed. We informed the ER nurse that our son was 100% feeding tube fed and we were now 90 minutes past the 30 minute window to get the button back in his stoma and that we had never replaced a button before as the button was still fairly new as he was under a year old.

Again we sat in the treatment room, this time for another 90 minutes or longer. But this point my frustration turned to anger as I had informed every nurse who stopped in that our sons stoma was closing tighter and tighter and we needed to get a button. Finally, the doctor came in took a look at his stoma, then left and took his time coming back. At this point I was beside myself as they returned with latex gloves, q-tips, and a foley catheter. I did not argue against the gloves as I was not willing to wait for them to track down latex free gloves.

However, furious and in tears as they pried open the stoma using the q-tips, lidocaine gel, eventually the foley catheter was able to fit into his stoma. We still had to take him to the GI team the following day where they had to open the stoma more due to our ordeal in the ER. However, the GI had better medication so our son was not screaming the whole time. We were also sent home with a larger foley incase his button popped out again to prevent the stoma from closing. We were also sent home with latex free gloves to keep on hand ensuring he was not handled with latex leaving rashes again.