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Afr J Paediatr Surg
Afr J Paediatr Surg
AJPS
Afr J Paediatr Surg
African Journal of Paediatric Surgery: AJPS
0189-6725
0974-5998
Wolters Kluwer - Medknow India

38770839
AJPS-21-178
10.4103/ajps.ajps_140_22
Original Article
A Comparative Analysis of Quality of Life in Children Managed for Omphalocele and Gastroschisis
Kapapa Melanie
Rieg Teresa 1
Serra Alexandre
Department of Surgery, Division of Pediatric Surgery, University Medical Centre Ulm, Ulm, Germany
1 Department of Gynaecology and Obstetrics, Hospital Heidenheim, Heidenheim an der Brenz, Germany
Address for correspondence: Dr. Melanie Kapapa, Department of Surgery, Division of Pediatric Surgery, University Medical Centre Ulm, Eythstrasse 24, 89075 Ulm, Germany. E-mail: melanie.kapapa@uniklinik-ulm.de
Jul-Sep 2024
16 5 2024
21 3 178183
20 10 2022
12 4 2023
24 7 2023
Copyright: © 2024 African Journal of Paediatric Surgery
2024
https://creativecommons.org/licenses/by-nc-sa/4.0/ This is an open access journal, and articles are distributed under the terms of the Creative Commons Attribution-NonCommercial-ShareAlike 4.0 License, which allows others to remix, tweak, and build upon the work non-commercially, as long as appropriate credit is given and the new creations are licensed under the identical terms.
Background:

Evaluation of quality of life (QoL) in paediatric surgical patients has not always received enough attention in the past. Our aim was to follow up patients with abdominal wall defects for a decade and (1) to analyse children’s view on QoL and to analyse parent’s view on QoL, (2) to evaluate satisfaction and psychological problems, (3) to assess present complaints including subjective aspects such as food intake, reduced appetite, pain in scar area and general abdominal pain and (4) verifiable clinical symptoms assessed through a physical examination and ultrasound. It was hypothesised that QoL would differ from gastroschisis (GS) and omphalocele (OC) children depending on the type of abdominal wall defect.

Materials and Methods:

A retrospective case–control design was used to compare children with GS (n = 36) and OC (n = 18). A clinical examination, including abdominal inspection, palpation and auscultation of bowel sounds with abdominal ultrasound, was offered, combined with a structured interview and specific QoL questionnaire (KINDL®). The focus was on QoL, child development, present complaints and satisfaction with the cosmetic outcome.

Results:

During clinical examinations with ultrasound, GS children were significantly more likely to have bowel loops stuck at the scar area (P = 0.008) with bowel malrotation and abnormal appendix position, compared to OC children (P = 0.037). They were significantly more likely to report irregular stools (P = 0.02) but were satisfied with the cosmetic outcome of the abdominal skin scar in 81% of cases. The KINDL® evaluation showed in the dimensions of QoL, namely ‘body awareness’, ‘mental health’, ‘self-esteem’, ‘family’, ‘friends’ and ‘school’, that there were no significant differences to healthy children. OC/GS parents were satisfied with their children’s physical development and QoL, noting no limitations in normal daily activities. Parents of OC children reported suffering from OC/GS-associated problems (P = 0.028) at the time point of interview.

Conclusion:

Subjective QoL did not differ significantly between OC and GS children. The satisfaction with the cosmetic outcome of the abdominal skin scar was good. On ultrasound examination, adherent bowel loops and bowel malrotation with resulting stool irregularities affect GS children. OC children’s parents reported suffering from OC/OS-associated problems, and all parents need to be educated about the symptoms of recurrent sub-ileus events or atypical appendicitis.

Abdominal wall defect
children
gastroschisis
omphalocele
outcome
parents
quality of life
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pmcINTRODUCTION

In recent decades, health-related quality of life (QoL) has become increasingly important in medicine.[1] In paediatrics, it is considered an important and sensitive outcome measure for the evaluation of medical interventions.[23] The birth of an omphalocele (OC)/gastroschisis (GS) child poses significant challenges to parents because multiple surgeries may often be required until the abdominal wall defect is closed.[4] Since a wide range of health problems exists, ranging from mild recurrent abdominal pain to significant limitations due to sub-ileus events, and we wanted to capture not only the physical symptoms but also individual psychological components such as ‘teasing at school’ and the fact of living without a ‘real’ belly button, we conducted a comprehensive data acquisition. There are a variety of different measurement tools to assess QoL in children and adolescents because QoL is considered an important and sensitive outcome measure for the evaluation of medical interventions, especially in paediatrics.[5] Therefore, it was important to map the assessment of QoL from the parents’ perspective as well.[67] To address all these approaches, we decided to use a combination of revised KINDL® questionnaires,[8] physical follow-up in combination with abdominal ultrasound and a survey on current satisfaction and complaints, which had never been collected in this setting in such a cohort. We hypothesise that results would differ depending on the type of abdominal wall defect.

MATERIALS AND METHODS

Design

Our study was designed as an observational study, and because of the small number of cases, an age-matched case–control design was used. Children with OC or GS and their parents during the study period 01/01/2000–07/30/2011 were included. The local Ethics Committee (No. 29/11) approved this study.

Inclusion criteria

Patients who during their newborn period were treated surgically for OC/GS during the study period at the University Hospital, Division of Pediatric Surgery, were included.

Exclusion criteria

We excluded newborns with syndromic anomalies such as multiple midline anomalies (e.g. Cantrell’s pentalogy), body wall–limp defect complexes and those who died (n = 4; OC patients).

Patients and surveyed subjects

The diagnostic code Q79.3 for GS and Q79.2 for OC of the International Classification of Diseases (ICD-9 and ICD-10) was used to identify the newborns. During the study period, 27.438 deliveries occurred, therefrom 36 GS and OC newborns. Forty-one families of 50 survivors joined, 72% of GS (n = 28) and 79% of OC (n = 13) children.

Data collection

All families were first contacted by telephone and informed about the study. After receiving written informed consent, quality of life data were collected using the KINDLR questionnaires (“Kiddy” version for children aged 4-7 years, “Kid” version for 8-11 year old patients, “Parents” version; Supplementary files 1–3). The ‘Kiddy’ version is suitably age adjusted, including only 12 items in six aspects of QoL. There are only three possible answers: ‘never’, ‘sometimes’ and ‘very often’. The KINDL® questionnaires for parents and the ‘Kid’ version consist of 24 items, recorded in the six aspects assessing the QoL: ‘body awareness’, ‘mental health’, ‘self-esteem’, ‘family’, ‘friends’ and ‘school’. In each question, the possible answers were ‘never’, ‘rarely’, ‘sometimes’, ‘often’ and ‘always’. This project has been registered under the ID number 1031 for the standardised Kiddy-KINDL® questionnaire within the KIDSCREEN Group Europe.[89] The results of our survey accepted a significance level of 95%. The families were invited for a structured interview, which questions included the field of satisfaction and present complaints. The structured interview comprised a total of 21 different sections with questions or data entries, most of which had to be answered with yes or no, or age appropriate or not age appropriate. The subjective impression was recorded by means of grades (1 – very good to 6 – insufficient), e.g. for the cosmetic result of the scar.

OC/GS children were additionally offered a clinical follow-up with assessing bowel motility, adherent bowel loops, non- or malrotation and location of the appendix via an abdominal ultrasound examination done by a senior paediatric surgeon with trained skills in ultrasound [Figure 1].

Figure 1 Type of information acquisition of omphalocele/gastroschisis patients

Statistics

The recorded data were initially analysed with descriptive methods and clearly outlined. The mean and standard deviation were reported for quantitative parameters. Exploratory tests between interesting subsets were selected based on the underlying parameters. Given the size of the subsets, the t-test and non-parametric tests, such as Wilcoxon, were performed in addition to ANOVA. Significance was established as P ≤ 0.05. All statistical tests were analysed using the IBM SPSS software, version 26 (IBM, Chicago, IL, USA).

RESULTS

Sex ratio

During the study period, newborns with a GS were in 64% of males and 36% of females, whereas with an OC, 56% were males and 44% females.

KINDL® questionnaires

Forty-two per cent of GS (42%) and 50% of OC children and parents completed the KINDL® questionnaires so that they could be evaluated in the six aspects assessing QoL, such as ‘body awareness’, ‘mental health’, ‘self-esteem’, ‘family’, ‘friends’ and ‘school’. The apparent number of participants is explained by the average age of the patients, which was 5.6 years for OC and 4.5 years for GS. The KINDL® questionnaires are suitable for the age of 4 years, and in our cohort, the overall age was still low. The overall result was ‘good’, especially for body perception and emotional well-being. The assessment by parents in the 8–11-year group showed in all six dimensions no significant differences between OC and GS children. The aspect ‘school’ scored worse in GS parents and children but without significance. In the self-assessment ‘Kid’ questionnaire (8–11 years), it was notable that the GS scored worse compared to OC in almost all areas, especially in ‘school’, yet the difference was not significant [Table 1].

Table 1 KINDL® questionnaires: Parent’s and children’s view

KINDL® questionnaires	Parent’s view (8–11 years)	Children’s view (8–11 years)	
		
GS (%; mean; SD) (n=6)	OC (%; mean; SD) (n=4)	P (GS versus OC)	GS (%; mean; SD) (n=6)	OC (%; mean; SD) (n=4)	P (GS versus OC)	
Overall QoL	74; 74.3; 11.33	78; 78.9; 1.78	0.364	75; 75.3; 9.76	81; 80.5; 7.72	0.399	
Body perception	76; 77.1; 13.5	86; 85.9; 9.38	0.293	78; 78.1; 16.18	91; 90.6; 11.97	0.225	
Emotional well-being	82; 82.3; 12.13	83; 82.8; 7.86	0.944	79; 79.2; 15.14	83; 82.8; 9.38	0.685	
Self-esteem	66; 65.6; 14.11	70; 70.3; 7.86	0.566	69; 68.8; 19.76	64; 64.1; 10.67	0.679	
Family	78; 79.2; 19.23	76; 76.6; 11.83	0.817	76; 77.1; 8.54	86; 85.9; 10.67	0.185	
Friends	77; 77.1; 15.14	75; 75.0; 10.21	0.816	83; 83.3; 10.21	78; 78.1; 11.97	0.481	
School	64; 64.6; 18.82	83; 82.8; 10.67	0.121	66; 65.6; 11.69	81; 81.2; 19.76	0.151	
QoL: Quality of life, GS: Gastroschisis, OC: Omphalocele

Personal interview followed by physical examination and ultrasound

Satisfaction and problems

Almost all OC/GS parents were very satisfied with their children’s physical development, with 96% of GS parents and 100% of OC parents reporting subjective satisfaction with it. The length of the initial hospital stays or the number of operations until final abdominal closure was irrelevant. However, at the same time, almost twice as many OC parents (82%) than GS parents (42%) reported that their children were still suffering from the consequences of their disease with a negative influence on everyday life (P = 0.028). With the cosmetic outcome of the abdominal scar, 81% of GS and 91% of OC parents were satisfied. Psychological problems were reported by 4% of GS and 9% of OC parents, with 11% of GS and 18% of OC children being teased at school. A reconstructed belly button was missing in 23% of GS and 36% of OC children [Table 2].

Table 2 Individual interview, examination and abdominal ultrasound

Type of information acquisition	Patients (n=37)	P (GS versus OC)	
	
GS	OC	
Satisfaction and daily life problems	n=26	n=11		
 Physical development satisfaction	96	100	0.515	
 Cosmetic scar result satisfaction	81	91	0.451	
 No existing navel	23	36	0.138	
 Suffering of disease	42	82	0.028	
 Psychological problems	4	9	0.884	
 Teased in school	11	18	0.594	
Present complaints	n=11	n=9		
 Reduced appetite	18	0	0.189	
 Vomiting	9	33	0.189	
 Food intake problems	18	11	0.668	
 Toleration of only small portions	18	22	0.827	
 Diarrhoea	18	11	0.668	
 Abdominal pain	54	33	0.355	
 Pain scar area	18	0	0.189	
 Irregular stool (diarrhoea and constipation)	63	11	0.020	
 Headache	0	22	0.108	
Clinical examination				
 Weight/height				
  Hypotrophy	15	9	0.594	
  Eutrophic	77	82	0.614	
  Hypertrophy	8	9	0.710	
 Scar hernia	19	27	0.557	
 Navel hernia	15	9	0.710	
Ultrasound results	n=26	n=11		
 Mal- or non-rotation of bowels	58	54	0.626	
 Normal bowel movement	81	64	0.223	
 Adherent bowel loop in scar area	77	27	0.008	
 Appendix in malposition	50	18	0.037	
 Diastasis of the rectus muscle	73	82	0.576	
GS: Gastroschisis, OC: Omphalocele

Present complaints

GS children reported more problems than OC children with food intake, reduced appetite, pain in scar area and general abdominal pain, but just the sub-aspect about irregular stool (constipation or diarrhoea) showed significance [P = 0.020, Table 2].

Clinical examination

Physical development measured by weight and height yielded hypotrophy in 15% of GS and 9% of OC children; overall, 77% of GS and 82% of OC children were eutrophic. On physical examination, 19% of the GS group had a scar hernia located in the abdominal incision line, but not in the umbilicus area, compared with 27% of the OC group. Umbilical hernia, located only directly in the umbilicus area, was present in 15% of GS children and 9% of OC children [Table 2].

Ultrasound results

Ultrasound examinations were offered to children with GS and OC. Through ultrasound examination, an intestine mal- or non-rotation was present in more than half of OC/GS children (58% GS vs. 54% OC). In 50% of GS children, the appendix could not be detected in the ‘loco typico’ position but elsewhere (P = 0.037). Normal bowel movements were detected in 81% of GS and 64% of OC children and adherent bowel loops at scar area were observed significantly more often in GS (77%) than in OC children (27%; P = 0.008). A diastasis of the rectus muscle was found in 73% of GS and 82% of OC children [Table 2].

DISCUSSION

Our findings were different from Koivusalo et al., which conducted a survey amongst OC/GS adults (18–48 years) and found no difference in the QoL in comparison to the general population[10] like Kaiser et al.,[11] who found comparable results with parents’ evaluation or Halsband and von Schwabe,[12] who studied OC/GS children with an average follow-up of 7.4 years and found no physical and psychological impairments or restrictions in daily life.[1112] However, with a closer look at our results, it was clear that the individual pillars of the QoL were rated differently, either well or poorly. Thus, GS parents rated them lower in ‘overall QoL’, ‘body perception’, ‘self-esteem’ and ‘school’ (19% worse) than OC parents for their children did. While, on the positive side, OC parents rated their children in ‘body perception’ with 86% of 100%, which was a very good result. These results suggest that the specificity of the questionnaire is crucial for the quality of the statements made. In other words, if you do not ask the right questions, you cannot expect the answers to be sufficient and comprehensive with respect to the problem you are trying to address. With a questionnaire that is too superficial, the subtleties of the different pillars cannot be captured and in the worst case lead to misjudgements or interpretations of the QoL.[13]

Seventy-four per cent of OC/GS children under care participated in clinical follow-up, including a personal interview and ultrasound. This was a representative sample including children with a mean age of 4.5 years (GS) and 5.6 years (OC), indicating a balance in both age and frequency of participation.[28]

The fact that the OC/GS parents reported both physical development and cosmetic outcome of abdominal skin scar between 81% and 100% (range: 0%–100%) shows that they are aware of the severity of the disease and potential complications and can reflect on the situation appropriately.[14] This does not contradict the finding that almost twice as many OC parents (82%) than GS parents (42%) reported that their children were still suffering from the consequences of disease. Since the physical complaints of the OC children were significantly lower than those of the GS children, we were able to find out on inquiry that in the overwhelming majority of cases, this meant the consequences of the accompanying medical conditions like congenital heart defects.[15] Sometimes, it is surgically not possible to reconstruct an umbilicus due to skin tension, and then, it is not done because the threat of wound healing disorder outweighs the cosmetic reconstruction of the navel. Therefore, a reconstructed belly button was missing in 23% (GS) and 36% (OC) and those children reported teasing and bullying from other children, often because of the abdominal scar. In our cohort, parents reported psychological problems in 4% of GS and 9% of OC children, but none of them received psychological support. The most important recommendation for parents in these situations is that they raise their children to be self-confident people who accept their bodies and know that they do not have to hide their scars or be ashamed of them. Then, they can better cope with psychologically hurtful situations and conflicts at school amongst their peers.[1617] However, if parents have the impression that their children are suffering from their outward appearance and are becoming increasingly withdrawn, these warning signals should be taken seriously and they should be made an offer of individual psychological support for their children[18] or themselves.[131920]

In our cohort, GS children reported more problems than OC children amongst others with food intake, reduced appetite, pain in scar area and general abdominal pain, but just the sub-aspect about irregular stool (constipation or diarrhoea) showed significance. These findings were only partially confirmed by Fasching et al., who found more abdominal pain and gastro-oesophageal reflux, yet no constipation or diarrhoea in GS children, like we do.[21] The more frequent occurrence of the described complaints in GS can be well reconciled with the sonographic results and those of the physical examination. However, manifest ileus, which again required surgery, did not yet occur in our cohort, but early laxative measures were able to control all episodes of faecal irregularity. Possible explanations include an excessive awareness of children and parents in regard to symptoms affecting the gastrointestinal tract.[14] GS children are more prone to long-term intestinal problems than OC children, which may be a direct result of the pre-natal thickening of the intestinal walls with oedema and fibrin deposition on the intestinal wall.[22232425]

During clinical follow-up, we were able to confirm the results of Guida et al., who showed that the physical development of most children with OC/GS is the same as compared to healthy children, despite pre-maturity, low birth weight and post-natal problems.[14] The presence of a scar hernia was higher in OC children, while a navel hernia could be found more often in GS children; both findings had no immediate surgical consequence.

Diastasis of the rectus muscle was found in 73% of GS and 82% of OC children. In the scar area, 81% of the GS and 64% of the OC children had normal bowel movements, so that it is not necessarily possible to draw a conclusion about problems due to the surgery that took place. The abdominal pain and stool irregularity more frequently described by GS children can be well explained by our findings of adherent bowel loops at the scar area.[25] In addition, the evidence of intestinal mal- or non-rotation, often with accompanying ‘non-loco-typico’ location of the appendix, should be explained in detail to the parents so that they can react appropriately in case of appendicitis with atypical pain localisation.[26] Otherwise, a delayed diagnosis with severe consequences could occur.

The major strength of our study was the high participation rate of OC/GS children and their parents and the long-time observation period. However, our study is not without limitations, such as the small sample size of a single-centre study. Another limitation is the age of the children, and further examinations and additional questionnaires in a few years would help to complete the subjective QoL. Nonetheless, we believe that these limitations do not interfere with the overall conclusions, as mentioned above.

CONCLUSION

We conclude that the KINDL® questionnaire is suitable for assessing the QoL of children with GS or OC. Contrary to expectations, no differences were found depending on the type of abdominal wall defect. A combination of the KINDL® with physical examination, including abdominal ultrasound, optimises the follow-up of GS and OC children, as current problems can be discussed directly with the parents. In cases where a reconstructed belly button was missing, children reported being teased and bullied by other children, often because of the belly scar. As this can lead to psychological problems or have a lasting impact on self-esteem, early psychological care must be considered. Our recommendation is that serious abdominal problems in OC/GS children should be treated in centres with appropriate experience and that the recording of QoL should be firmly established in the follow-up of children with congenital malformation.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.

Supplementary File 1 Parents’ questionnaire

Supplementary File 2 Children’s questionnaire

Supplementary File 3 Follow-up questionnaire: Personal interview

Acknowledgements

We would like to thank the Collaboration Centre of Prof. Dr. Ulrike Ravens-Sieberer, Research Unit Child Public Health and Centre for Obstetrics and Pediatrics, Department of Psychosomatics in Children and Adolescents, University Medical Centre Hamburg-Eppendorf, Germany.
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