Jason was born 9 weeks premature. He had severe silent #Reflux and a #HiatusHernia at birth. Jason was always a difficult feeder. His parents tried everything to assist him with bottle feeding. He was constantly admitted into hospital with #Bronchitis and pneumonia which often was a result of aspiration of milk into his lungs. With the non-eating, dehydration and repeated chest infections there was no choice but to have surgery to fix the reflux and repair a hiatus hernia. He had a #NissanFundoplication and a feeding tube was placed directly into his tummy at 15 months. He was malnourished and failure to thrive.
The feeding tube was the only solution for his nourishment and survival. Jason simply would not eat no matter what. He would basically starve himself. Six months into having a feeding tube the family were desperate and raised funds to go to Austria to a specialized feeding clinic to wean Jason off the feeding tube. The 3 week tube weaning program is intense. Tube feeds are reduced drastically in order for the child to start feeling hungry and learn to eat. The program is difficult but it works – unfortunately not in Jason’s case. Jason caught rotavirus and norovirus which is severe vomiting and diarrhea.
This was day 3 into the program and he was isolated due to cross infection. The program continued for Jason even though he was very ill. Feeds were reduced, therapy continued and the process of starvation to make him eat went ahead. He had a #Colonoscopy as well as an endoscopy whilst there including various blood tests. The scopes revealed nothing abnormal, the biopsies were all normal but the bloods revealed that his IGG levels were abnormally low. He was diagnosed with immunodeficiency. The family extended their stay in Austria to 5 weeks to hopefully succeed with the wean.
BUT having vomiting, diarrhea, being starved and catching a further infection the wean was not a success. Tube feeds needed to be started again for Jason to gain weight and get his strength back. A second wean the following year via net coatching too was unsuccessful. Jason simply isn’t a child that will eat even with being starved. Apart from feeding difficulties Jason has combined primary immunodeficiency. His body simply cannot fight infections as it lacks the B and T fighter cells. With being diagnosed in Austria intravenous immunoglobulin therapy was started at 2 years where every 3 weeks he receives human immunoglobulin to build up an immune system for him.
Jason cannot go 3 weeks without treatment as he will get sick. Jason continued to not eat, continued getting sick, always gagged to a point where he would vomit (being very difficult after the Nissan) and eventually dehydrate where a hospital admission was necessary for fluids. He does not feel pain, cannot regulate his body temperature and has chronic diarrhea and gut issues. He had many MRI scans at birth that were normal but later as he got older the MRI revealed demyelination on the brain. All milestones were delayed, speech and understanding very delayed.
With the repeated admissions for gagging, difficult feeds and dehydration the family were invited for a rare disease meeting with a panel of overseas doctors in Pretoria. Having seen the panel of doctors who were all specialists Jason was diagnosed with having mitochondrial disease and cyclic vomiting syndrome. With cyclic vomiting any form of stress or excitement can trigger a cyclic vomiting attack. These attacks happen regularly and can last for up to a week often resulting in dehydration and a hospital admission.
Mitochondrial disease comes in many forms. Basically the mitochondria are dysfunctional. Mitochondria are in every human cell and are responsible for creating energy for the body to function properly. In mitochondrial disease the cells do not function properly causing havoc in the body.With the repeated infections and hospital admissions, the family also learnt that Jason has high levels of protein in his urine. Repeated urine tests have revealed he keeps having these high levels but all the scans,ultrasounds, blood and urine tests cannot tell why he is losing this protein.
These high levels indicate #nephroticsyndrome (chronic kidney disease). He is on treatment for this but even with treatment the high levels persist.Jason is 9 years old now. He still has the feeding tube due to feeding difficulties and weight gain. He has
started eating various foods through perseverance and therapy. He goes to a lovely special needs school where he is learning his colors and numbers, is learning sight words and can now write his name and surname. He is so used to hospital that it has become part of his life. Jason is a survivor. He has the most amazing loveable nature; he has pure determination and willpower. He wears his invisible cape and tackles his daily challenges and struggles like a true superhero.