By: Anna Povegliano
Like most parents, we were thrilled with the arrival of our first child. After 42 weeks and an emergency C-section, Daniel was born on May 29, 1992. Immediately at birth we were told something was not right. Daniel was placed in isolation for fear of infection and was transferred to the Hospital for Children (Sick Kids) one day later. After numerous tests Daniel was diagnosed with a rare condition called Mastocytosis. This is a disorder caused by the production of too many mast cells gathering in the body’s tissues. Only an estimated 5 - 10 new cases are diagnosed for every million people in the USA. There are different severities of this condition and we were lucky as it appeared that only his skin was affected. Daniel would grow to be a normal child with a skin condition. We brought our son home for the first time in late June 1992. For the first few months Daniel was thriving. Then in October 1992, at the age of 5 months, Daniel stopped gaining weight. At a follow-up visit to Sick Kids in December he was admitted for failure to thrive. He spent another two weeks in hospital for testing while evaluating different nutritional supplements. Daniel was released two days before to his 1st Christmas. We found ourselves back at Sick Kids in January when it was determined that normal feeding was not enough to sustain Daniel and a feeding tube was inserted into his abdomen. With the tube inserted, training for us completed and a regular feeding schedule we took him home. Our stay at home was short lived, Daniel was rushed back as he was not able to keep anything down and was extremely dehydrated. He was admitted again. While in hospital Daniel had emergency surgery after his started bleeding rectually. We were told that it could go either way. If his insides had gone gangrene there would be nothing they could do. We waited and prayed. Later we were told that Daniel had a kink in his bowl and lesions were present in his stomach and intestine. After a few days of IV fluids Daniel would no longer eat, it was like he had forgotten how. The feeding tube was not working, he was not absorbing nutrients and everything that went in found a way back out. Daniel spent the next 10 months in hospital. Sick Kids became our home. During this time Daniel had many complications. He caught anything that was lingering in the hospital and it was always the worst possible case. His blood levels were never normal, they were either to low or too high. Every week there was something new. On May 29, 1993 we celebrated his 1st birthday at the hospital. We will never forget the wonderful nursing staff who brought him gifts, a cake and even decorated his room. They made it memorable for the entire family. It was also during this stay that it was decided Daniel would have to be fed intravenously. A central venous line (CVL) was inserted in the jugular vein on his neck and directly to his heart. We were trained on the proper care and maintenance of the CVL to avoid infection. This was extremely important because there are limited access points in the body and once an access point had been used it could not be used again. Daniel was placed on Total Parental Nutrition (TPN) and fed intravenously at home for the remainder of his short life. There is no cure for Mastocytosis and because of the severity of his condition, lack of information and constant pain the doctors were only able to treat Daniel’s symptoms. His schedule was regimented and we did whatever was needed to care for him. Although his body was receiving all the nutrients it required Daniel was still not thriving. He did not eat, drink, talk or walk. He was a child with numerous disabilities. The mass cells that originally were believed to have affected only his skin had infiltrated every major organ in his little body. Daniel had his first seizure on Mother’s Day May 9th, 1993, but now his seizures were getting worse. He sometimes had seizures that would last 45 minutes. After each seizure he was drained and would sleep for hours. In April of 1996 after one of his seizures Daniel was placed on life support in the NICU for 10 days. When he came off life support it was obvious that he had regressed. Later that summer it was decided that Daniel’s tonsils and adenoids had to be removed. This was a simple procedure and he was scheduled for day surgery on September 20th. After the surgery and numerous hours in recovery we took Daniel home, little did we know that this would be the last time. That evening he was struggling, his breathing was labored and we called 911. Daniel was taken to the nearest local hospital and then transferred immediately to Sick Kids. Five days later, on September 25th, 1996 Daniel died in my arms, surrounded by the love, affection, determination, and understanding he had always known. In just four short years Daniel had endured more pain and suffering than most people experience in a life time. He was surrounded by love each and every day of his life and we believe that was the only reason he managed to stay with us as long as he did. Daniel is a child of hope. He has taught us so many things and we are proud and blessed to have loved him. |