Sleep-related breathing disorders beyond infancy following open spina bifida repair

European Journal of Pediatrics (2026) 185:476 https://doi.org/10.1007/s00431-026-07141-9 RESEARCH Sleep‑related breathing disorders beyond infancy following open spina bifida repair Davin Lee1 · Danny Del Cid‑Linares2 · Alexander Van Speybroeck1,3 · Kathryn A. Smith1,3 · Ramen H. Chmait4 · Thomas G. Keens1,2 · Sally L. Davidson Ward1,2 · Iris A. Perez1,2 Received: 18 March 2026 / Revised: 15 May 2026 / Accepted: 31 May 2026 © The Author(s) 2026 Abstract In patients with repaired open spina bifida, there are limited data on respiratory outcomes beyond the first year of life. We hypothesize that after 1 year of age there is 1) resolution of sleep-related breathing disorders (SRBD), 2) improvement of oxygenation and 3) no difference in SRBD between prenatally vs. postnatally repaired groups. We reviewed 67 patients with repaired open spina bifida and polysomnography (PSG) after age 1 year seen at Children’s Hospital Los Angeles between 2015–2025. Demographics, neural tube defect location, surgery type, PSG results, and respiratory support data were collected. There were 34/67 subjects with PSG before and after 1 year of age. Before 1 year of age, 19/34 had central sleep apnea (CSA), 33/34 had obstructive sleep apnea (OSA) and 30/34 required supplemental oxygen. At age 12 to 35 months, the prevalence of OSA (p < .001) and supplemental oxygen requirement (p = .006) decreased, however CSA persisted. There were no differences in SRBD between those with prenatal repair and postnatal repair of open spina bifida. There were 33/67 subjects with PSG after age 1 year only. In children ages 3 to 17 years, up to 92% had OSA, 11% had CSA, and 44% required supplemental oxygen. Conclusion: In patients with repaired open spina bifida, OSA and supplemental oxygen requirement improved after 1 year of age, however, the majority still had SRBD without difference between those prenatally vs. postnatally repaired. Our findings highlight the importance of continued surveillance with PSG in this population. What is Known: • Infants with prenatally or postnatally repaired open spina bifida have sleep-related breathing disorders • Current guidelines do not require formal evaluation with polysomnography as standard of care What is New: • After age 1 year, obstructive sleep apnea prevalence decreased, but persisted in the majority of patients • Oxygen supplementation requirement prevalence decreased Keywords Spina bifida · Myelomeningocele · Sleep-disordered breathing · Prenatal repair · Postnatal repair · Polysomnography Communicated by Peter de Winter This study was performed at Children’s Hospital Los Angeles * Iris A. Perez 1 Keck School of Medicine of University of Southern California, Los Angeles, CA, USA 2 Division of Pediatric Pulmonology and Sleep Medicine, Children’s Hospital Los Angeles, 4650 Sunset Blvd. Mail Stop 83, Los Angeles, CA 90027, USA 3 Department of Pediatrics, Children’s Hospital Los Angeles, Los Angeles, CA, USA 4 Department of Obstetrics and Gynecology, Keck School of Medicine of University of Southern California, Los Angeles, CA, USA Vol.:(0123456789) 476 Page 2 of 7 Introduction Open spina bifida is a condition characterized by an open defect in the spinal canal due to incomplete closure of the neural tube during embryonic development, resulting in secondary changes in the brain including Chiari II malformation (CM-II) with hindbrain herniation [1]. Children with open spina bifida are at increased risk for developing sleep-related breathing disorders (SRBD) with previous studies suggesting a prevalence of up to 81% in children with myelomeningocele specifically [2, 3]. In the general pediatric population, SRBD may present with disrupted sleep architecture or poor gas exchange and have been associated with cognitive and cardiovascular problems if left untreated [4–6]. A growing number of studies have identified benefits of prenatal repair of open spina bifida [7]. Recently, Stark et al. found no significant difference in frequency or severity of SRBD in infants less than 1 year of age with prenatal repair compared to those with postnatal repair [8]. However, there are limited data on SRBD outcomes in children with prenatally or postnatally repaired open spina bifida as they age beyond 1 year. Thus, it is essential to understand the respiratory outcomes as these children grow older to guide decision-making for screening and management in the care of spina bifida patients. The main goal of this study is to explore the prevalence and presentation of SRBD at least 1 year after surgical repair of open spina bifida. Additional goals include exploring the relationship between respiratory outcomes and potential factors that may predispose to chronicity or severity of SRBD. We hypothesize that after 1 year of age there is 1) resolution of SRBD, 2) improvement of oxygenation and 3) no difference in SRBD between prenatally vs. postnatally repaired groups. European Journal of Pediatrics (2026) 185:476 2.6, 3.0) [9–11]. Obstructive apnea was defined as absence or decrease in air flow by ≥ 90% for at least 2 breaths associated with respiratory effort. Obstructive hypopnea was defined as decrease in flow by ≥ 30% with snoring, increased inspiratory flattening of the nasal pressure, or paradoxical breathing in association with ≥ 3% oxygen desaturation or arousal. Obstructive sleep apnea (OSA) was present if obstructive apnea–hypopnea index (OAHI) ≥ 1.5 events/h. Central apnea was defined as absence or decrease in flow by ≥ 90% for at least 20 s or breaths with absent respiratory effort and ≥ 3% oxygen desaturation, arousal, or heart rate < 50 beats per minute for 15 s. Central sleep apnea (CSA) was present if central apnea index (CAI) ≥ 5 events/h. Periodic breathing was defined as ≥ 3 central apneas with duration ≥ 3 s separated by ≤ 20 s of normal breathing. Severity of OSA was classified as mild (1.5–5 events/h), moderate (5–10 events/h), and severe (> 10 events/h) [12]. At our center, referring providers have the option to order a baseline, diagnostic polysomnogram in room air, or an oxygen titration with one of two protocols: 1. Begin oxygen supplementation for more than two desaturation episodes to an SpO2 of less than 89%, or 2. Begin oxygen supplementation for more than 5 min of sleep time with an SpO2 less than 89%. Subjects were determined to be overweight if weight for length (WFL) or body mass index (BMI) was ≥ 85th percentile for their age. Subjects were obese if WFL or BMI was ≥ 95th percentile for their age. Analysis was performed using Fisher’s exact, paired, and unpaired t-tests as appropriate to the type of data. This study was approved by the Institutional Review Board of Children’s Hospital Los Angeles. Results Methods This study is a chart review of 67 patients with spina bifida between ages 1 and 21 years seen at CHLA between January 2015 and December 2025. Patients were included if they have undergone prenatal or postnatal open spina bifida re (...truncated)