Intestinal Failure Programme at Mediclinic Midstream
Posted on 17 March 2021
A multi-disciplinary team of specialists based at Mediclinic Midstream has recently established an Intestinal Failure Programme – focusing primarily on paediatric patients.
Paediatric gastroenterologist Dr Celeste Kock explains, “The most common patient group presenting with intestinal failure is premature infants who have experienced necrotizing enterocolitis and required extensive surgery. The loss of bowel prohibits growth and development in many of these patients. Other causes for intestinal failure may include congenital intestinal abnormalities, trauma, inflammatory bowel disease and intestinal dysmotility disorders.”
From left to right (back row): Marenel Pansegrouw, Dr Anell Meyer, Dr Paul Stevens, Dr Celeste Kock, Elize Craucamp (front row): Dr Lara Jones, Dr Faye Morar [photo taken pre-COVID]
To prevent long-term health impact, the team of specialists at Mediclinic Midstream established the programme. “Complications for these patients include severe failure to thrive, vitamin- and micronutrient deficiencies, parenteral nutrition induced cholestasis (and often liver failure), dehydration and electrolyte abnormalities, line related sepsis and limited vascular access. Early referral to a specialised intestinal failure unit has been proven to prevent complications and optimise care,” Dr Kock explains. “We decided to establish the unit to offer our patients multidisciplinary care resulting in a better quality of life.”
Intestinal failure is a complex condition requiring specialised care. The goal of care within this multi-disciplinary team is holistic in nature and includes medical- and surgical care, growth and nutrition. Medical management is provided by Paediatric Gastroenterologists, Dr Celeste Kock and Dr Anell Meyer, and encompasses the rehabilitation of the intestine. These patients often require intensive/ high care, which is provided by Dr Faye Morar and Dr Lara Jones.
Paediatric surgeon, Dr Paul Stevens is skilled in bowel surgery and is responsible for the placement of central venous catheters. These lines allow the team to administer intravenous feeds while rehabilitating the intestine. Experienced dietitians, Elize Craucamp and Marenel Pansegrouw, closely monitor growth and nutritional needs of each patient.
“Oral aversion and feeding difficulties are common in these patients, and Martelize Gropp, a speech therapist, provides comprehensive feeding therapy to assist with these matters,” explains Dr Kock.
According to Dr Kock, any patient with short bowel syndrome regardless of the cause (NEC, gastroschises, intestinal atresia, volvulus) should be referred for specialised care. Other reasons for referral can include suspected intestinal dysmotility or pseudo-obstruction syndrome necessitating intravenous nutrition or suspected congenital enteropathy or diarrheal syndrome.
She believes that any child requiring intravenous nutrition for more than 20 days (excluding preterm neonates), patients on parenteral nutrition with raised bilirubin levels and patients with recurrent small intestinal bacterial overgrowth are strong candidates to be referred to the multi-disciplinary team.
Dr Kock explains the importance of early referral, “Prevention of complications in these patients is key in their long-term management. Patients referred late present with growth failure, developmental delays, intestinal failure associated liver dysfunction and limited vascular access. Research has proven that optimal intestinal adaptation is minimal after the first two years of life.”
She explains further, “Short bowel syndrome is managed in 3 phases: acute, adaptation and maintenance phase. Standard acute care is provided by the paediatric surgeon and his team to stabilise the patient. This phase starts directly after resection and in general lasts less than 4 weeks. The adaptation phase starts once the patient has passed stool or has a functional stoma and enteral feeding can be started. This is the time that maximal absorption capacity needs to be achieved and can last from 1-2 years.”
In referencing the importance of timeous referral, Dr Kock explains that knowledge of the acute phase management is key for optimal care. “Knowing the indications for referral to a unit or team equipped in managing such patients and referring timeously is key. Keeping in mind that the first 2 years are crucial for intestinal adaptation and growth, and late referrals will have a huge impact on outcome,” she concludes.
Dr Kock highlights the role of the multi-disciplinary team, with a recent patient case, “We recently treated a patient, Ane Pretorius, who was delivered at 26 weeks weighing only 980g. She developed necrotizing enterocolitis at 5 days of age. After 2 laparotomies her colon, ileocecal valve and terminal ileum were removed. Being a microprem, she had to overcome multiple other challenges including infections, premature lung disease and multiple intracranial haemorrhages.”
Ane was referred to our unit at the age of one year weighing a mere 5.7kg. She was fed with a nasogastric tube and had a high output stoma with large volume losses. She presented not only with growth failure and neurodevelopmental delay but also sensory problems making oral feeding impossible.
Aggressive rehabilitation was initiated. This included medication and a change to elemental formula, initially given via nasogastric tube. She also required additional intravenous maintenance fluid due to huge losses from her stoma. She received neurophysio- as well as speech therapy. Three months after her admission to Mediclinic Midstream’s paediatric unit, Ane weighed 9.5kg. Due to her inability to feed orally, the decision was made to insert a gastrostomy feeding tube.
Unfortunately, the young patient subsequently developed gastroparesis with vomiting after the gastrostomy feeding tube was inserted. The decision was then made to switch to a gastrojejunal feeding tube.
After an initial period where she was doing well, Ane was diagnosed with intestinal failure. Due to refractory and recurrent small bowel bacterial overgrowth episodes she was developing liver cirrhosis and required multiple courses of antibiotics. She could not sustain growth with enteral feeds, so she was initiated on total parenteral nutrition (TPN). The mother was already trained in managing her intravenous maintenance therapy at home, so the addition of home TPN was an easy addition.
“Since her discharge in December 2020, Ane has made great strides in terms of growth (current weight of 15kg) and development. She has recently joined a school and she loves the interaction with friends,” Dr Kock explains with pride. A true team effort to achieve a positive clinical outcome.