Long-term feeding issue and its impact on the daily life of congenital diaphragmatic hernia survivors: results of the first patient-led survey

Power, Beverley; Shibuya, Soichi; Lane, Brenda; Eaton, Simon; Coppi, Paolo De

doi:10.1007/s00383-019-04570-6

Cited by 19 publications

(10 citation statements)

References 24 publications

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“…In general, a higher prevalence of GER was detected after evaluation with impedance and pH metry [ 13 ]. In a patient-led survey by CDH UK, a registered charity for CDH patients governed by a volunteer committee, 62–92% of 151 participants reported GER symptoms [ 25 ]. Interestingly, “three fourths of the responders did not agree with the statement that feeding problems improved with time”.…”

Section: Discussionmentioning

confidence: 99%

Long-Term Evaluation of Gastroesophageal Reflux in Neonates with and without Preventive Anti-reflux Surgery at the Time of Congenital Diaphragmatic Hernia Repair

et al. 2022

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One potential comorbidity after congenital diaphragmatic hernia (CDH) is gastroesophageal reflux (GER), which can have a substantial effect on patients’ quality of life, thriving, and complications later in life. Efforts have been made to reduce gastroesophageal reflux with a preventive anti-reflux procedure at the time of CDH repair. In this follow-up study of neonates participating in a primary RCT study on preventive anti-reflux surgery, symptoms of GER were assessed longitudinally. Long-term data with a median follow-up time of ten years was available in 66 patients. Thirty-one neonates received an initial fundoplication. Secondary anti-reflux surgery was necessary in 18% and only in patients with large defects. It was required significantly more often in patients with intrathoracic herniation of liver (p = 0.015) and stomach (p = 0.019) and patch repair (p = 0.03). Liver herniation was the only independent risk factor identified in multivariate regression analysis. Primary fundopexy and hemifundoplication did not reveal a protective effect regarding the occurrence of GER symptoms, the need for secondary antireflux surgery or the gain of body weight regardless of defect size neither in the short nor in the long term. Symptoms of GER must be assessed carefully especially in children with large defects, as these are prone to require secondary anti-reflux surgery in the long-term. Routine evaluation of GER including endoscopy and impedance measurement should be recommended especially for high-risk patients.

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Section: Discussionmentioning

confidence: 99%

Long-Term Evaluation of Gastroesophageal Reflux in Neonates with and without Preventive Anti-reflux Surgery at the Time of Congenital Diaphragmatic Hernia Repair

et al. 2022

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“… Up to 75% of surviving CDH infants have feeding problems like gastro‐esophageal reflux disease, need for tube feeding, oral aversion 65 . Approximately one in five CDH newborns are discharged on partial tube feeding 66 (Figure 3).…”

Section: Childhood Morbiditymentioning

confidence: 99%

What should we tell parents? Congenital diaphragmatic hernia

et al. 2021

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Congenital diaphragmatic hernia (CDH) is characterized by a defect in the muscle dividing the thoracic and abdominal cavities. This leads to herniation of the abdominal organs into the thorax and a disturbance of lung development. Two‐thirds of cases are identified by prenatal ultrasound in the second trimester, which should prompt referral to a tertiary center for prognosis assessment and counseling by a multidisciplinary team familiar with this condition. In this review, we summarize evidence on prenatal diagnosis and postnatal management of CDH. There is a focus on information that should be provided to expecting parents during prenatal counseling.

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“…[5][6][7] However, the predictive value of these parameters for (co) morbidity in surviving CDH infants, for example, pulmonary hypertension (PH), gastrointestinal morbidities, or prediction of the actual (postnatal) defect size remains limited. 3,4,[8][9][10][11] Previous studies have explored the predictive value of the prenatal stomach position (SP) for the occurrence of postnatal morbidity, using the grading system proposed by Cordier et al [12][13][14][15] It was shown that the prenatal SP is a potential marker for postnatal survival, the need for postnatal patch repair, need for extracorporeal membrane oxygenation (ECMO), and need for prolonged respiratory support. 12,14 Moderate to almost perfect inter-and intraobserver agreement for the determination of prenatal SP has been shown by different groups, which might support its clinical applicability.…”

Section: Introductionmentioning

confidence: 99%

“…Currently the most validated predictive ultrasound (US) parameters for postnatal outcome in fetuses with left‐sided CDH include the observed‐to‐expected lung‐to‐head ratio (O/E LHR) and liver position (intra‐abdominal or intra thoracic) 5–7 . However, the predictive value of these parameters for (co)morbidity in surviving CDH infants, for example, pulmonary hypertension (PH), gastrointestinal morbidities, or prediction of the actual (postnatal) defect size remains limited 3,4,8–11 …”

Section: Introductionmentioning

confidence: 99%

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Prenatal stomach position and volume in relation to postnatal outcomes in left‐sided congenital diaphragmatic hernia

et al. 2021

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Objective: To examine the association between prenatal stomach position (SP) grade and stomach volume (SV) and the need for pulmonary hypertension (PH) treatment after birth in prenatally diagnosed left-sided congenital diaphragmatic hernia (CDH), live born >34 weeks. Methods:In retrospect, SP grade and SV were determined in fetuses with isolated left-sided CDH from 19 weeks gestational age (GA) onwards at three different time periods (≤24 weeks' GA: US1, 24-30 weeks' GA: US2; ≥30 weeks' GA: US3). Primary outcome was need for treatment of PH after birth. Secondary analyses included the predictive value of SP and SV for other respiratory outcomes and postnatal defect size.Results: A total of 101 fetuses were included. SP grade was significantly associated with need for treatment of PH (US1, US2, and US3: p < 0.02). Also, prenatal SP grade was positively associated with defect size and development of chronic lung disease (CLD) in survivors. No association was found between SV and respiratory morbidities or postnatal defect size. Conclusion:SP grade in left-sided CDH fetuses is associated with an increased need for PH treatment, a larger postnatal defect size and CLD in survivors. We consider SP determination a valuable contribution to the prenatal assessment of left-sided CDH. Key pointsWhat is already known about this topic? � Prenatal stomach position (SP) grade has been proposed as a predictive ultrasound parameter for postnatal survival, patch repair, need for extracorporeal membrane oxygenation and need for prolonged respiratory support in left-sided congenital diaphragmatic hernia (CDH).This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.

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Long-term feeding issue and its impact on the daily life of congenital diaphragmatic hernia survivors: results of the first patient-led survey

Cited by 19 publications

References 24 publications

Long-Term Evaluation of Gastroesophageal Reflux in Neonates with and without Preventive Anti-reflux Surgery at the Time of Congenital Diaphragmatic Hernia Repair

Long-Term Evaluation of Gastroesophageal Reflux in Neonates with and without Preventive Anti-reflux Surgery at the Time of Congenital Diaphragmatic Hernia Repair

What should we tell parents? Congenital diaphragmatic hernia

Prenatal stomach position and volume in relation to postnatal outcomes in left‐sided congenital diaphragmatic hernia

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