Taylor Harrington, NICU Nurse.
This case study follows Isabella, a complex premature infant whose Neonatal Intensive Care stay was further complicated by a spontaneous perforation, requiring a laparotomy and bowel resection resulting in faltering growth.
Isabella was born at 30 weeks + 3 days gestation, weighing 1425 grams. Antenatal scans had identified suspected congenital abnormalities, including a two-vessel umbilical cord, right multicystic dysplastic kidney, bilateral SVC, and an aberrant right subclavian artery. Additionally, there was significant polyhydramnios (excess amniotic fluid), raising suspicion of duodenal atresia. An amniocentesis was performed, and her microarray and FISH results were normal. Despite her early arrival, Isabella was born in good condition and breathing on her own. She required brief stabilisation with mask CPAP and oxygen during her transition to extrauterine life but was weaned off and quickly and transported to NICU self-ventilating in room air. Her weight was around the 66th centile for her gestation. During her birth examination, an anorectal malformation was also noted. Given this finding, along with her other congenital anomalies, it became evident that Isabella likely had VACTERL association—a complex condition defined by a group of congenital defects that tend to occur together, however each case in unique.
Isabella was admitted to the NICU for further investigations and management of her prematurity after developing mild respiratory distress. Under normal circumstances, she would have been placed on CPAP. However, due to her anorectal malformation and suspected duodenal atresia, the NICU and surgical teams agreed that elective intubation was the preferred approach. This decision aimed to prevent unnecessary air entry into her gastrointestinal system from CPAP’s positive pressure, which could lead to aerophagia, exacerbating her condition and causing significant discomfort. She was electively intubated and received a dose of surfactant to support her lung function. A chest X-ray confirmed appropriate endotracheal tube (ETT) placement and revealed the classic ‘double bubble’ sign of duodenal atresia, along with clefting of the thoracic vertebrae. Plans were promptly made for surgery, including a duodenoduodenostomy and colostomy formation.
On day of life (DOL) 1, Isabella underwent a laparotomy to repair her duodenum and form a colostomy. During the operation, the surgical team found a grossly dilated proximal duodenal bulb with distal collapse of the small bowel. The duodenal atresia was confirmed and resected, with no other atresia noted along the bowel.
A colostomy was formed just distal to the peritoneal reflection of the left colon, along with a distal mucous fistula for later contrast studies. The surgeons also noted that the colon wall was very fragile. After surgery, Isabella was transferred back to NICU, where she received 48 hours of antibiotics for gut and surgical cover.
She recovered well postoperatively and remained ventilated for eight days before being extubated to high-flow (HF) support. Trophic feeds were started on DOL 4 and were gradually increased to full enteral feeds of 180 mL/kg/day of fortified expressed breast milk (FEBM) by DOL 17.
On DOL 28, corrected gestational age (CGA) 34+3, Isabella clinically deteriorated, developing a firm, distended abdomen with significant mottling and metabolic acidosis. She was made NBM, an IV cannula was placed, and blood work was obtained. An X-ray showed a large amount of free air in the abdomen, indicating a bowel perforation. Isabella, weighing only 1965 grams, was immediately prepared for theatre once again.
Isabella returned to theatre for her second laparotomy. Her previous wound was reopened and extended. Upon exploring her abdomen, the surgical team encountered dense fibrous adhesions involving the liver capsule and abdominal wall, likely from her prior duodenoduodenostomy. Superiorly, the liver was difficult to release, and some capsular ooze was noted but controlled using a haemostatic agent.
Several soft adhesions were found throughout the bowel, along with a perforation in the mid-distal ileum—approximately 100 cm distal to the D-J flexure and 30 cm proximal to the ileocecal valve. The perforation appeared to be related to an area of adhesional obstruction, however the mesentery also appeared to be kinked and swollen with chyme, potentially contributing. Additionally, Isabella had a large mesenteric defect at the terminal ileum.
A full adhesiolysis was performed to allow visualization of the entire small bowel and correct the mesenteric twist. The perforated section was resected, and a double-barrel stoma was formed. The proximal ileostomy was positioned approximately 100 cm from the D-J flexure, while the distal ileal-mucous fistula was located 30 cm from the ileocecal valve. The exact length of the resected bowel was unclear.
Following the procedure, Isabella was closed and transferred back to NICU, where her parents received the difficult news that her tiny abdomen now had two double-barrel stomas.
Given Isabella’s sudden and significant deterioration preoperatively, her postoperative course was relatively stable. She required a brief period of high-frequency oscillatory ventilation (HFOV) due to a left upper lobe lung collapse but was extubated back to HF postoperative day (POD) 4 and to self-ventilation in room air (SVRA) by POD 9. By this time, her pain was well managed, and she was weaned off her morphine infusion, remaining comfortable on paracetamol.
Following a short period of gut rest, during which she received full total parenteral nutrition (TPN), Isabella was gradually graded back to full enteral feeds of FEBM by POD 5 (DOL 33). Her femoral line that was placed during her laparotomy was removed at this time as it was noted to be leaking with pus surrounding the site. Isabella completed a course of antibiotics for this in consultation with the infectious disease team. Her bloods at this time were not indicative of an infection, but based on her surgical history antibiotic therapy was recommend.
After recovering from her laparotomy and resuming full feeds, Isabella began struggling with weight gain. Once weaned off TPN, she experienced a week of static weight gain despite her ileostomy output being within a normal range (23–28 mL/kg/day). This faltering growth was unexpected, prompting the neonatal team, in collaboration with the dietitian, to consider chyme reinfusion therapy as a plausible treatment option for Isabella.
At 36+2 weeks CGA (DOL 41), Isabella was started on chyme reinfusion therapy (CRT) using The Insides® Neo. She was POD 13 and weighed 2250 grams.
Isabella had already been using Hollister Pouchkins bags, one on each side of her small abdomen for her double-barrel stomas. Due to her limited surface area, the bags overlapped, initially leading to frequent leaks until she grew a little bigger. At her next stoma bag change, her ileostomy bag was fitted with the device. The bedside nurses were able to easily cannulate her ileal mucous fistula using a size 6Fr gastric tube, which was secured at the 5 cm marking with the clip.
Chyme was withdrawn from her ileostomy bag every six hours and reinfused over the following six hours. It wasn’t long before her colostomy started producing stool, and soon, her colostomy bag needed emptying too, an exciting milestone in Isabella’s refeeding journey!
Throughout her CRT, Isabella’s ileostomy output remained within an acceptable range, but more importantly, she began to show a positive growth pattern and consistent, semi-formed colostomy output. She remained on full enteral feeds of 200 mL/kg/day and was even able to start breastfeeding. After just one week, she had gained 190 grams. Everyone, especially her parents, beathed a sigh of relief as she was finally growing again!
Isabella continued her refeeding journey for 32 days. During this time, she kept gaining weight and making progress in areas related to her prematurity. Eventually, she reached a point where she no longer required NICU care and was transferred to the surgical paediatric ward, where she continued CRT while awaiting an anastomosis date.
On Day of life 73, 40 weeks + 6 days corrected, weighing 2800 grams, Isabella had her reanastomosis. This was an exciting day for Isabella’s parents, as they were one step closer to going home!
She underwent her third and final laparotomy of this hospital stay, during which her ileostomy was reversed. Her surgery went smoothly, and the surgical team also revised her colostomy after discovering adhesions tethering the stomal end to her abdominal wall. Once the colostomy was released and mobilized, it was resutured in place, and Isabella was on her way to recovery.
She required 24 hours of HF support postoperatively and was restarted on small trophic feeds during this time.
In reference to Figure 1, Isabella was born just above the 25th centile for a female preterm infant. After her first laparotomy, during which her duodenal atresia was repaired and a colostomy was formed, her growth began to slow from approximately 32–34 weeks CGA, nearly crossing the 25th centile line before her second laparotomy.
Following her second laparotomy at 34+2 weeks CGA, Isabella initially demonstrated adequate weight gain, likely due to postoperative TPN support. However, TPN was weaned by POD 5, approximately 35+0 weeks CGA. At this time she was back on full enteral feeds. This correlated with a one-week period of relatively static growth before she commenced CRT at 36+2 weeks CGA.
CRT contributed to Isabella’s postoperative growth trends, though it is evident that she continued to struggle with adequate weight gain as she began to cross the 10th centile and approached the 3rd. This happened despite being on feed volumes of 200 ml/kg/day which is the upper limit for neonates with complex cardiac and renal conditions. It could be hypothesized that Isabella’s faltering growth was more closely related to her VACTERL association and other complex medical conditions rather than a direct reflection of bowel function.
Isabella spent a total of 32 days on chyme reinfusion therapy via The Insides® Neo. Her weight gain trends were as follows：
• From birth to her second laparotomy, she gained approximately 19 g/day.
• Following her second laparotomy, she experienced a rapid increase in weight gain over a 7-day period to 38 g/day.
• Once TPN was discontinued, her weight gain significantly slowed to an average of 2 g/day over the next 7 days.
• After initiating CRT, her weight gain stabilized at 26 g/day—slightly better than her pre-deterioration daily average and a marked improvement from her period of static growth.
After Isabella’s reanastomosis and recovery, she spent 12 more days in the hospital. During this time, she was gradually transitioned back to full enteral feeds while also working on taking all her feeds via breast and bottle, eventually weaning off her nasogastric tube. Several specialty teams, including neurosurgery, cardiology, and renal, assessed Isabella during this period, cleared her for discharge, and arranged outpatient follow-ups.
On DOL 85, CGA 43+1, Isabella’s parents were beyond excited to finally take her home and return to a semi-normal life with their family.
Isabella’s mum, Danielle, and dad, Andy spent three months in the hospital at Isabella’s bedside, far from their home and support network, which was three and a half hours away. Eventually, Andy had to return to work and was only able to stay on weekends. Meanwhile, Danielle and Andy also had a two-year-old daughter, Olivia, who was adjusting to being away from her parents and grandparents—though she loved spending time with her cousins! She would visit on weekends and was completely entranced by her baby sister, though the NICU environment wasn’t the most exciting place for a toddler.
Danielle and Andy demonstrated incredible resilience throughout Isabella’s journey. After receiving the difficult news antenatally that their daughter could have congenital birth defects, later confirmed as VACTERL association following her preterm delivery, they had to watch their fragile, premature baby undergo her first surgery at just one day old. Just as they were coming to grips with caring for a medically complex child with a stoma, one they thought she would have for at least a year, Isabella surprised them with a second surgery and yet another double-barrel stoma.
Despite these challenges, Danielle and Andy took everything in their stride, remaining strong advocates for their daughter. Now, as Isabella approaches her first birthday, she continues to face the struggles of a medically complex child, particularly with weight gain, remaining below the second centile. However, she has thrived at home, her development flourishing thanks to the love and support of her big sister. Danielle and Andy continue to be fierce advocates for Isabella, and their story is nothing short of inspiring.
In conclusion, Isabella, a medically complex baby, spent a total of 32 days using The Insides® Neo after undergoing two laparotomies. She experienced a period of static growth prior to starting chyme reinfusion therapy but began gaining weight again once The Insides® Neo was introduced. After a long, three-month hospital stay, she was discharged home to be with her family, where she continues her complex medical journey. With the unwavering support of her family, Isabella is thriving.
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This case study follows Adrienne, a premature infant whose Neonatal Intensive Care stay was complicated by bowel perforations, significant faecal peritonitis and large volume turbid ascites, secondary to a milk curd obstruction. She required a beside laparotomy in the Neonatal Intensive Care Unit (NICU) and her postoperative journey was very difficult, complicated by hypovolemic shock, an aortic clot, a wound dehiscence with a fistula formation, and a further deterioration with septic shock leading to reduced blood flow to her small bowel.
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