I found some of my essays today from college and just wanted to share a couple of them. The following is one of them. It was originally written in January 2000.
What my nephew taught me
When a child is born we try to teach them to live, love, learn, hope and believe. We show them right from wrong and watch the child grow. But what happens when a doctor tells someone that their child has a serious health problem and may not live long? How do you help that child to live the best life possible.
Five years ago, this became a reality for my sister and our family. My oldest sister, Linda, was about 6 months pregnant with her second son, when she found out from the doctors that there was something wrong with his kidneys. The doctors could not diagnose the problem at that time, although they thought that it could have been polycystic kidney disease. The child's kidneys appeared to be larger than normal, have cysts on them and not be functioning properly, as seen on the ultrasound.
Anthony Wade G. was born at a small naval base hospital in Camp Lejune, North Carolina, on July 23, 1995, three weeks before he was due. He weighed 5lbs. 8oz. and was 19 3/4 in. long. The doctors had to perform an emergency Cesarean section because he was coming out feet first but only had one leg down. After being delivered, he was taken immediately to the neonatal intensive care unit at Pitt Memorial until September 30, after which he was transferred to Medical College of Ohio.
When he was first born, he was so fragile and tiny that I was afraid that I would break him if I held him. He was in an incubator and had an iv. My sister went up to see him everyday and actually caused her stitches from the C-section to open up from all of the stress. She blamed herself for what was wrong with Tony, even though the doctors told her time and time again there was nothing she could have done to prevent the problem. She asked herself, "How can I leave him there everyday and go home, when I know he should be home with me? He's supposed to be at home playing and sleeping in his own bed. I should be able to see him anytime I want instead of going up to a hospital when a doctor tells me I can." She was scared, worried, mad and feeling guilty. She didn't understand why it had to happen to her son.
Tony was nothing but skin and bones when he was a baby. His eyes appeared sunken in and had dark circles around them. He was very jaundiced and sickly looking. He had long, skinny fingers and toes.
When Anthony was only seven days old, he had to have surgery. The surgery was to remove his left kidney and blockage in the ureter tube. At this time, the doctor was able to diagnose my one-week old nephew with hydronephrosis, which is explained as an enlarged, cystic kidney. After the surgery, Anthony was attached with a nephrostomy bag, which was to remove any urine that he wasn't expelling himself, and a drainage tube to remove surgery drainage.
The doctors in North Carolina told my sister that her son probably would not live past the age of two, especially if he did not receive a kidney transplant by then. Anthony, this sweet, innocent, young child, who wasn't even able to sit up or roll over, was given a death sentence. How could we help him?
A week or so after he had the surgery, the doctors found out that Tony had an infection in his blood that was causing clots to form. They hooked him up to a central line by his shoulder. It was like an iv but it only controlled medication for the infections in his bloodstream. After about a week and a half, the medicine was still not working. They decided to give him a 1/3 of a blood transfusion. He was taking medication daily to help the kidney function. But, still, he was not doing very well. After all he'd been through - surgery, a blood transfusion, and taking medicine daily - he was still losing weight and seemed to be getting worse.
Finally, on September 30, 1995, the doctors decided to have my nine-week old nephew transferred to Medical College of Ohio. MCO has a great kidney doctor and children's hospital. Anthony was able to have his entire family around and this love helped him. He gained weight and started to look better. Within 5 days, he was able to go home.
This brown-haired, green-eyed cutie, who was "supposed" to die by age 2, is now 4 1/2 years old. He is 3 ft. tall and weighs 36lbs. He has shown my family and ,especially, me how to love unconditionally, and help a child grow, no matter what the barriers. He has helped me to hope for the best, believe in the future, and know the impossible is possible.
Tony, who will be in kindergarten this fall, will never be completely healthy. He has just one kidney, which only works up to 50% of it's full capacity. If he gets sick, his mom must pay extra special care to get him better fast, because illness can cause more damage to his kidney. He is more prone to urinary tract infections and must have ultrasounds and renal scans done once a year. Anthony must take his medication, Bicitra, twice daily to assist the kidney to work at its depleted capacity. And, of course, he will always have his "battle scars", as my dad calls them, from his surgery.
Despite all this, this young child has so much life in him. Although he will always be smaller than most children his age, he's healthy and strong. He's growing and learning. He looks better than anyone expected. He is almost the average height and weight for children his age. He has a chubby bell, but not too chubby. He's not extremely skinny like when he was a baby. Tony's face looks healthier because he's not jaundiced anymore and his eyes don't appear sunken-in or dark around them. He has had no more problems with his blood and no more surgeries.
This "sick" child has taught me some important life lessons in just a few short years. Yet, he, himself, has so much to learn. I hope that I have a chance to teach him some of these things.
Children are our future, and no matter how "sick" they are, we must always have hope and be strong for them, so they can grow and learn form us.
My nephew, Tony, who this was written about will be 13 this coming Wednesday. To date, he still has had no more surgeries. His nephrologist (kidney dr) took him off of his medicine well over a year ago and he's been stable without it. Around Halloween 2006, Tony was hospitalized for a fever. His dad (my sister's ex-husband, who Tony and his older brother, Christian have lived with for several years) could not get his fever to break and there was risk of dehydration so he had to go in for iv fluids. It would have been devastating to his kidney otherwise. Tony is now just over 5 ft tall and around 100lbs. He has had some difficulty in school and had to repeat kindergarten and I believe another grade, and was diagnosed with ADHD a few years ago. At this time, he is not medicated because the ADHD medicine was affecting his appetite to the point he was not gaining any weight. Tony has been going to a charter school and doing very well there. Now that my sister and her current husband along with their 3 children have moved back to Ohio, I have gotten to see all four of her sons (including Tony) and her daughter more times in the last 2 weeks than I had in almost 7 years!
