Hope Chelsea Pasemko was born on October 19, 1999 at 24 weeks gestation (4 months premature), weighing only 670 grams (1 pound, 8 ounces). She fit into the palm of our hand and our wedding bands fit on her arms like large bracelets. She survived those first critical hours and days, surprising even the doctors with her strength and determination.
At five weeks old, weighing less than 2 pounds, she underwent her first major surgery to remove 2/3 of her small bowel, which had necrotized (died) as a result of infection. She came out of this surgery like a true fighter, with a strong heart. As a result of this surgery, she could not tolerate regular feeding in enough quantity to sustain her, so was placed on IV nutrition to supplement her feeds. Two months later, she had her second major surgery to reconnect the bowel which had been resting, healing and growing. During this time, her daddy provided the blood she needed for transfusions, through a directed donor blood program available for neonates.
Hope finally came home for the first time when she was 5 months old. She was bright, happy, alert and GROWING!! Her portable feeding pump and the knapsack holding her IV nutrition the only indication of any medial problems. She was home with us for over 3 months when she suddenly became ill. We were out of town visiting friends in Drumheller, AB-our first family weekend away. Hope was taken by STARS air ambulance to Calgary (the nearest center). By the time we arrived in Calgary, Hope had deteriorated considerably. She was back on the ventilator, and being hooked up to numerous IV's. By the next day we knew that she had a serious bowel infection that most children don't survive. They told us to get our families together-that she would likely not survive the night. Hope rallied, with us at our side, and within a few days, we started seeing some signs of improvement. She was kept in a chemical coma so that the special ventilator could do it's job. She was finally put back on the conventional ventilator after 11 days and the next day was stable enough to medivac back to Edmonton.
Once back in Edmonton, Hope continued to improve. She suffered a small setback when she had a bleed from her stomach but responded to medication and was finally home with us again at the end of August. Hope was happy to be at home with us again and we enjoyed a couple of weeks with her back home, and even got her to full feeds and off of the IV nutrition. She was readmitted to hospital in mid-September with what we thought was another infection, but was in fact, end stage liver disease-a result of the long term IV nutrition. The only hope for her survival was a liver transplant, her best chance being a living related donor transplant. My mother, in Kingston, Ontario and Hope's father were both "worked up" for transplant. Allen was selected as the donor and Hope's "work-up" was completed. She returned home at the end of September, while we waited for a date for transplant.
Hope was home again for a month and most importantly home for her first birthday!! Transplant was scheduled for November 14, 2000. Hope was readmitted to hospital October 31, 2000, due to complications from the liver disease, she stabilized within a day and waited for transplant.
November 14th, Allen and I arrived at the hospital-anxious for transplant. After spending a few minutes with Hope, Allen went down to get prepped for surgery. They called for Hope when they had gotten to the point where they were ready to retrieve the lobe of Allen's liver that would go to Hope. It was a long day-Allen spent 10 1/2 hours in surgery. Hope's surgery was expected to take 12-14 hours due to the scar tissue from previous surgeries, in true Hope style, she was out of the OR in 6 hours, and the surgeons were very happy that the surgery couldn't have gone any better!!!
Allen's recovery went well, he was back to work after six weeks, as expected. Hope's recovery was fraught with setbacks-she had two more surgeries within a week and a half of the transplant-to fix details. The additional surgeries caused her stomach to remain very distended and kept her on the ventilator longer (4 weeks). We were still hoping to get Hope home for Christmas, even it was just for a day pass. More bowel infections plagued Hope-we spent Christmas in the hospital with her for the second year in a row. During this time since transplant, Hope had gone through numerous blood product transfusions and countless "procedures". She was a trooper through it all and kept smiling. In January, discharge planning was initiated and we were set to bring Hope home within a few days. Several hours after one of her "procedures", Hope went into respiratory arrest and had to be placed back in PICY and on the ventilator again. She recovered from this quickly and returned to the ward. We started discharge planning in mid February again, and just prior to discharge, Hope again suffered a setback and ended up back in PICU.
During this PICU stay, a tumour was discovered behind her left eye. Transplant patients are at higher risk for cancer due to the anti-rejection (immunosuppresion) drugs necessary to protect the transplanted organ. Hope was not strong enough to survive chemotherapy due to her complications since transplant. We made the difficult decision to enjoy whatever time was left with her and not to subject her to any other unnecessary procedures. Arrangements were made for us to bring Hope home with pallative care support on March 21. We spent the last night at the hospital with Hope, taking turns holding her all night.
Hope passed away peacefully in her fathers arms, embraced by her mother, early the next morning.
We know this is a long story for a relatively short life, but we hope it helps you understand Hope's journey, and that she can touch your lives the way she did all those around her. Hope had a special way of bringing people together, and brought many very special people into our lives.
