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Our Kids - Meet Isabella

Isabella was born at Mount Sinai hospital two months early, weighing only 5 pounds 2 ounces. Although her parents Daniela and Livio were concerned, they were initially pleased with her size and weight - their older daughter had also been born prematurely and weighed a little over two pounds.

Isabella, "Short gut" child

But within 24 hours, Isabella's haemoglobin levels started dropping at the same time her stomach was growing distended. Isabella was transferred to SickKids.

Isabella was bleeding internally. Tests revealed that her small intestine was not only twisted but also not properly developed. At three days old, Isabella underwent a surgical resection of her small intestine leaving her with only about 26 centimetres of small intestine, about 20 per cent of what a normal baby that age should have. Isabella became what is known as a "short gut" child.

For Isabella, this meant not being able to absorb all the nutrients necessary for survival as well as having diarrhea, weakness, and weight loss. Many children with short gut require prolonged admission to hospital and often do not survive more than a few years because of their dependency on Parenteral Nutrition (PN). PN is a mixture consisting of protein, fat, sugar, vitamins and minerals delivered directly into the bloodstream through the use of a central venous catheter. PN is a 'double-edged sword' as it permits children to survive and gain weight, but long-term use can lead to liver failure, as the newborn liver is immature and sensitive to the PN. Some patients will only survive if they receive a liver and/or intestinal transplant.

After seeing too many babies die from short gut syndrome, Dr. Paul Wales, a neonatal and paediatric surgeon coordinated the Group for the Improvement of Intestinal Function and Treatment (GIFT) at SickKids three years ago with Drs. Jae Kim (Neonatology/Gastroenterology), Aideen Moore (Neonatology) and Paul Pencharz (Gastroenterology). GIFT is a multidisciplinary team of specialized health care professionals including general surgery, gastroenterology, neonatology, transplantation, clinical nutrition, physiotherapy, social work and palliative care.

The only program of its kind in Canada, GIFT's mandate is to improve the clinical care of patients with intestinal failure and to contribute new knowledge to the field through clinical and basic science research. In children, the most common causes of short bowel syndrome are birth defects affecting intestinal development or bowel diseases that occur in the neonatal period, therefore, the majority of patients followed by the GIFT team are babies and infants under two years of age. As of 2006, there were 66 children involved in the GIFT program. Compared to 2003, prior to the GIFT program, there has been a 50 per cent reduction in the proportion of children who have died from liver failure.

Isabella's parents met with the GIFT team, in the Neonatal Intensive Care Unit (NICU), two days after her first operation to determine the best course of treatment. GIFT developed a comprehensive medical and surgical plan that permitted Isabella to improve. Eventually, with the help of GIFT's integrated teaching and home parenteral support program, Isabella was able to go home four months later.

Now, Isabella is stable and growing. She receives 70 per cent of her nutrition in her bowel, but she is still dependent on home PN for growth. Isabella's nutritional status and liver function are followed closely in the Short Bowel Clinic. It is possible Isabella may still ultimately require a liver transplant (her mother has already been identified as a match for a living related transplant) and possibly further bowel surgery in the future. For the time being, although Isabella is small for her age, this affectionate toddler is reaching her developmental milestones.

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