By JEFF PICKELL
Stepping into the Dunson household, it would be hard to gather that the four year old Morenci resident delightedly slapping his knees as he watches a children’s DVD has endured 11 major surgeries. Or that he’s spent much of his life in the intensive care unit.
Philip Dunson, Jr.—or Mikey as he is called affectionately—is animated and happy. He’s outgoing and friendly to guests. He knows his ABCs and 1-2-3s. He can slap a mean high five. He also suffers from a number of congenital conditions that prevent him from living a normal life.
When Morenci resident Teresa Dunson was 15 weeks pregnant with Mikey, he was diagnosed with Shone’s Syndrome, which is characterized by multiple anomalies on the left side of the heart. Chief among those is drastically reduced size.
At the time of the diagnosis, Teresa’s doctors in Cleveland told her that the left side of Mikey’s heart would probably never grow to more than 10 percent of the size of the right side. It was suggested she terminate the pregnancy.
“I don’t believe in that and I decided that if God was going to take him he would have to do it after he was born,” she said. Today, she stands by her decision. The left side of Mikey’s heart grew to 70 percent the size of the right side. The condition might be more manageable were it not that Mikey also suffers from primary intestinal pseudoobstruction (IPO).
As a result of this medically puzzling chronic condition, Mikey’s intestines are unable to process solid food and he must be nourished intravenously.
Thanks to advances in medical technology, such as a tube feeding system, the Dunson family has been able to share a life of many joys, albeit one punctuated by periods of intense stress.
TREATMENT—While Shone’s Syndrome is a severe condition, IPO is a much more dangerous one. There is only one treatment for primary IPO—bowel replacement. At this point, the Dunsons have opted not to pursue this treatment because the procedure is long, painful and often unsuccessful, and there is a very high probability of the body rejecting the new organ.
Unfortunately, the only alternative isn’t appealing either.
Currently, Mikey receives nutrients through three tubes—one that feeds into his heart, one that feeds into his stomach, and one that feeds into a segment of the small intestine called the jejunum.
Food consists of a $1,200 per unit liquid called TPN, which, when used on children, destroys their liver. It is unknown how long Mikey can subsist on TPN before his liver fails, but he will eventually succumb to it if another method of feeding him is not developed, Teresa said.
Until last year, Mikey was dangerously vulnerable to complications arising from the feeding system. Periodically, harmful bacteria would travel from inside his body to the point where his heart feeding tube entered his body, causing septic infections that usually landed him in intensive care.
Six times, the infections have six times caused Mikey to suffer a condition called disseminated intravascular coagulation (DIC). During a DIC episode, many small blood clots develop throughout the cardiovascular system, which decreases the supply platelets and clotting agents necessary to control bleeding. This puts patients at a severe risk of bleeding to death.
“This is something that does adults in,” Teresa said. “It’s terrible. To think that Mikey has gotten it six times and bounced back each time is amazing. He’s an amazing kid.”
Last October, doctors began to employ a measure to prevent infection. The tube leading to Mikey’s heart now splits into two tubes just outside his body, which are used alternately every two days. The tube that is not in use is filled with ethanol, which has so far effectively killed off the infection-causing bacteria.
“The ethanol has been a miracle,” Teresa said.
EXPENSES—It would seem prudent for one of the parents of a child like Mikey to leave the workforce to be a full-time care provider, but the Dunsons don’t have that option. Without employer-provided insurance, they would lack the money necessary to keep their child alive.
“The insurance company has just spent millions and millions of dollars on Mikey,” Teresa said. “I can see why some insurance companies would have a million-dollar cap.”
Philip is a master technician diesel mechanic. Teresa works as a primary care technician at Flower Hospital in Sylvania and Mikey is covered under her insurance.
Horror stories often circulate about the stinginess of insurance companies, but Teresa said hers has been wonderful. So has the staff at Flower Hospital, which allows her extended leaves during Mikey’s bad periods.
“If I worked any other job in this whole country, I would’ve been fired by now,” she said.
Still, both she and Philip have worked when Mikey was in intensive care.
“I have probably been looked down upon by others for working when my child was in the ICU, but you do what you have to,” Teresa said.
Even with Teresa’s insurance, the co-pays on Mikey’s 17 prescriptions add up to a substantial sum, which has led them to buy supplemental children’s special health care insurance from the state at the cost of $50 a month.
WISH—As a result of Shone’s Syndrome and IPO, Mikey suffers from physical and mental developmental disabilities. He is missing ribs. Some vertebrae are fused. Due to an apraxia, he can’t communicate well verbally and relies on a system of gestures to converse and express needs. His weakened immune system and another complex condition prevent him from interacting with other children.
Despite his misfortunes, Mikey is fully functional in the enjoyment department, which was made quite evident recently during a trip to Orlando, Fla., provided by the Kids Wish Network (KWN).
Late last year, Mikey’s grandmother received a call from a KWN worker seeking donations and suggestions for children who may be eligible to have a wish granted. Of course Mikey’s name was mentioned, and about four months later, Teresa returned from work to find two giant parcels on her front porch.
They contained several toys for Mikey, as well as travel arrangements for the family of three to spend five days and four nights in Orlando. The trip lasted from March 21 to March 25, and throughout it, the Dunsons were astonished by the generosity of all the organizations involved.
For example, Teresa was concerned about getting Mikey’s liquid meals onto the plane, so she phoned a week ahead of time to inform security of the family’s circumstances. When they arrived, the airport head of security escorted them to the plane.
In another instance of generosity, the hotel the Dunsons stayed at upgraded the family to an executive suite to provide access to a refrigerator to keep the TPN cool.
The family was furnished with breakfast and a dinner at a different restaurant each night, as well as passes to Disney World, Sea World, and Universal Studios.
It was, in many ways, a tiring and taxing trip, said Teresa, but both sets of grandparents came along to help out and to share the enjoyment of the unique experience.
What was the best part of the trip?
Definitely when Mikey got to meet Barney the dinosaur at Universal Studios. He lavished his hero with hugs and kisses.