When dealing with GI symptoms, one of the most crucial decisions about the nutritional management of children is whether a non-oral feeding method is suitable to achieve an adequate intake. Often a gastrostomy is indicated not only in cases of dysphagia but also in cases of malnutrition due to other transient or permanent conditions. Most of these patients experience some degree of NI that can significantly worsen symptoms. The management is made even more difficult by the lack of clear indications regarding the diagnostic process, the timing and type of treatment and the management of complications and re-interventions [1, 2].

In the following paragraphs, we present existing knowledge on gastrointestinal issues causing nutritional problems, surgical management, persistence of symptoms, need for reoperation, and associated morbidity. We correlate our findings with established knowledge. Based on our findings and focusing on known information, the multidisciplinary team responsible for the management of these patients in our hospital developed a treatment protocol. This protocol aims to assist in selecting the most suitable surgical option for a specific type of patient, thereby minimizing the need for an excessive number of invasive procedures and reducing potential patient discomfort.

Dysphagia is the most frequent GI symptom complained, with its prevalence ranging from 0.9% in the general pediatric population up to 94% when considering NI children with comorbidities, as in our series [9].

Similarly, typical and atypical GER symptoms are frequently reported by patients and caregivers, leading to GER disease (GERD) in 7–20% of children [10,11,12,13]. The prevalence of GER symptoms was 57.1% in our population, obviously it was higher because it represented a sample of patients undergoing NS.

In the absence of warning signs of GER, history and physical examination are usually sufficient [1, 14] However, when symptoms become troublesome or lead to dangerous or long-term complications, ESPGHAN guidelines recommend objective measures such as esophageal pH or pH/MII and/or upper GI endoscopy. In our 5 year experience, 83.8% of patients underwent some diagnostic investigation before the first NS procedure and 88.5% before the second. Most children treated at our Centre were clinically fragile, with complex clinical conditions and multiple comorbidities, therefore if they presented highly suggestive clinical features, symptoms refractory to medical treatment and/or complications of GERD and/or there was another diagnostic test that showed the presence of RGE, after multidisciplinary discussion it may had been indicated to perform reflux surgery even in the absence of a previous GI endoscopy. Considering the entire population, 44 children older than 1 year underwent antireflux surgery isolated or associated with gastrostomy as the first NS procedure, 8/44 patients had had GI endoscopy before surgery (18.2%). Additionally, patients with GERD may exhibit DGE, and the surgical approach may require additional intervention to decrease the risk of fundoplication failure, such as pyloroplasty or gastro-jejunal diversion. Many children had gastrointestinal contrast examination during the study period, we would like to underline that the patients underwent this diagnostic tool to evaluate any anatomical anomalies and not to diagnose GER or DGE.

Multiple studies have shown that patients with nutritional issues often undergo numerous surgical procedures [1, 15,16,17].ESPGHAN recommends the use of gastrostomy as the preferred method of providing intragastric access for long-term tube feeding in children with NI. The group also advises against performing routine anti-reflux surgery when placing gastrostomy as it may cause significant morbidity [1]. In line with the most recent guidelines, all patients in subgroup A in our study underwent an isolated open gastrostomy or PEG as the first procedure. Guidelines suggest that investigations for GER before PEG placement are not necessary in the case of children without GER symptoms [15]. The correlation between PEG and GERD remains debatable. While some studies concluded that PEG does not exacerbate GERD [16, 17], other authors have proved otherwise [18]. In previous studies, the frequency of additional surgeries for GERD after PEG ranged from 9 to 17% [1, 2, 19, 20],which is similar to the results observed for subgroup A (17.4%).

When a patient presents with GERD Guidelines suggest that anti-reflux surgery should only be considered when other conditions have been ruled out, when symptoms are not resolved by lifestyle changes and medication, and when the patient is at serious risk for a complication [1, 14, 21, 22].Other authors propose that fundoplication to patients with reflux-associated aspiration or moderate to severe esophagitis [2]. In our study, some patients with GER symptoms did not receive anti-reflux surgery as their first operation because they did not meet the above indications. However, some of these patients required a fundoplication as a second procedure, which can be performed around an existing gastrostomy, as demonstrated by Ponsky et al. [19].

The incidence of DGE in pediatric patients with symptomatic GER in the absence of mechanical obstruction is about 50% [23]. Many studies demonstrated that DGE increases the risk of wrap failure after NF in NI children [18]. In subgroup C, pyloroplasty or pyloromyotomy was the most common type of surgery for DGE. Some authors recommend performing pyloroplasty at the same time as fundoplication in patients with DGE. This procedure has been shown to have no effect on morbidity or mortality rates [24]. Gastrojejunal diversion, when combined with fundoplication, may reduce the risk of wrap disruption or herniation by lowering intragastric pressures [25].

Indications for primary TEGD include severe neurodisability (GMFCS-E&R grade V) [26], unsafe swallow, severe GERD unresponsive to medical treatment, recurrent aspiration pneumonia, poor growth, and poor quality of life for both patients and caregivers [27]. Two systematic reviews discuss TEGD in children, with Peters and colleagues [28] collecting 181 cases (157 with NI) and Tanaka et al.[29] including 175 children (147 with NI). Considering both studies TEGD was performed as the primary operation in 60–65% of cases and as a rescue procedure in 35–40%. Recent studies focusing on parents’ perspective report significant improvements in weight gain, reduction in vomiting and regurgitation, airways infections, and hospitalizations for pneumonia. Caregivers also reported feeling more confident and requiring less time in administering food [30, 31]. In our series, patients who underwent either primary or rescue TEGD did not require further NS procedures in 12 out of 13 cases (92.3%).

Various nutritional data are available in the literature to evaluate malnutrition: feeding time, weight percentile, thickness of the triceps skin fold, medium-upper arm circumference, or muscle area [1]. During data collection for our study, only the weight percentile before and after the last NS procedure was available. In one in three patients in our population the weight percentile increased at the last follow-up.

Clavien Dindo grade ≥ 3 complications were collected and analysed. All included patients underwent clinical follow-up at our centre. There may be potential bias in the reporting of postoperative complications. Apparently, no patients underwent surgery for complications in local hospitals.

The complication rates associated with gastrostomy fashioning have been reported to range from 16 to 70%[32] depending on the placement technique [33]. In our study, 75 patients underwent an isolated open gastrostomy or PEG as their first NS, with a morbidity rate of 9.3%.

NF most common complication is dysphagia, [21, 22, 34, 35] other common complications are gas-bloat, early satiety/pain, retching, dumping syndrome, affecting nearly 50% of patients.[36]Other complications are worsening aspiration risk from oesophageal stasis, and wrap slipping/unwrapping [1]. In our population, 14 patients underwent an NF alone as the first surgery while 73 patients to an NF associated with other procedure, and the morbidity after these procedures was 14.3% and 11%, respectively.

Early complication rate for TEGD is 16%, with 7–8% of cases requiring surgical intervention, while late complications occur in 15–19% of cases. The re-operation rate is comparable to and even lower than re-operation rates following fundoplication. The overall mortality rate associated with complications of TEGD is reported to be between 1.5 and 3.3% [27,28,29].However, it is important to underline that in our series as in the literature, the mortality rate reflects the natural progression of the underlying conditions.

After their last NS procedure, 14.3% of patients in our study reported the persistence of the same GI symptoms or the development of new ones. In larger published studies, recurrence rates following fundoplication range from 10 to 25% in NI children, compared to 2% to 10% in children with normal neurological development [18, 37].

As previously described, children with NI affected by seizures represent significant risk factors for redo Nissen [38].

In our sample, epilepsy was significantly more frequent in the NI group and the presence of epilepsy was correlated with a greater incidence of morbidity and persistence/appearance of new gastrointestinal problems. Studies have reported failure rates ranging from 6.8 to 52% for redo NF [25, 36, 39,40,41,42].

In our patient series, only 16.9% of patients required more than one NS procedure. Comparing the two groups, we observed a higher re-intervention rate in Group 2 (19.6% vs 14.4%, p = 0.142), although this result may be influenced by the fact that this group is smaller. The literature typically reports re-intervention rates for specific types of NS.

While NF after PEG is reported in 9–17% of patients in the literature [1, 2, 19, 20], there are no published reports on the rate of other types of NS following isolated PEG/gastrostomy procedures.

In a comparison of NF and PEG-J, children who underwent PEG-J had a higher incidence rate of redo interventions than those who underwent fundoplication [43]. The possibility of establishing post-pyloric nutrition (PEG-J or jejunostomy) could overcome the problem of DGE, but the incidence of complications from these procedures is not negligible [44].