A Closer Look at Delayed Primary Cleft Surgery and Unrepaired Cleft Lip and/or Palate in 5 UK Cleft Centers

Abstract

Background: There may be many reasons for delays to primary cleft surgery. Our aim was to investigate the age of children undergoing primary cleft lip or primary cleft palate repair in 5 cleft centers within the United Kingdom. Identify the reasons for delayed primary cleft lip repair (beyond 6 months) and delayed primary palate repair (beyond 13 months). Identify children who had a cleft lip and/or palate (CL±P) that was intentionally unrepaired and the reasons for this. Methods: A retrospective, multicenter review of patients born with a CL±P between December 1, 2012, and December 31, 2016. Three regional cleft centers, comprising of 5 cleft administrative units in the United Kingdom participated. Results: In all, 1826 patients with CL±P were identified. Of them, 120 patients had delayed lip repair, outside the expected standard of 183 days. And, 178 patients in total had delayed palate repair, outside the expected standard of 396 days. Twenty (1%) patients had an unrepaired cleft palate. Conclusions: This large retrospective review highlights variations between centers regarding the timing of lip and palate surgery and details the reasons stated for delayed primary surgery. A small number of patients with an unrepaired cleft palate were identified. All had complex medical problems or comorbidities listed as a reason for the decision not to operate and 50% had a syndromic diagnosis. The number of patients receiving delayed surgery due to comorbidities, being underweight or prematurity, highlights the importance of the cleft specialist nurse and pediatrician within the cleft multidisciplinary team.

Speech-Language Pathology Provision During the COVID-19 Pandemic for Children Born With Cleft Palate in the United Kingdom—Parent/Caregiver Perspectives and Experiences

“…These restrictions therefore presented a significant challenge for speech-language pathology (Britton, 2021). It is worth noting that delays in the U.K. cleft treatment pathway are not unique to the pandemic and were present beforehand, most commonly when children had comorbidities (Butterworth et al, 2021). The magnitude of effect that the pandemic has had on U.K. cleft care delays is not yet fully known; however, delays to the multidisciplinary pathway are likely to be more numerous and widespread than prior to the pandemic.…”

Current Surgical Practice for Children Born with a Cleft lip and/or Palate in the United Kingdom

“…The timing of cleft lip reconstruction (IQR: 4 to 5 months) and soft palate reconstruction (IQR: 8 to 12 months) is similar to previous UK reports 10,38,39 and does not appear to have altered with centralization of care over the last 3 decades. Where primary reconstruction was delayed beyond the NHS threshold ages, the SSF data could not elucidate the reason, but has been reported elsewhere to occur more commonly in children with co-morbidities 40 . We would hope the baseline data from this study in conjunction with outcome data that is being collected will contribute to the debate around optimal timing for palatal surgery in relation to critical speech development 41 psychological and growth outcomes 42,43 .…”

Philtral Height Discrepancy in Patients with Complete and Incomplete Cleft Lips + /-Palate – Results from a Single Nation Consecutive Cohort

“…Repair is undertaken between the age of 3 and 6 months in line with accepted guidance in the United Kingdom. 7 All measurements in this study were undertaken by the three consultant specialist cleft surgeons working in the nationally commissioned cleft service for Scotland according to an agreed technique. Pre-study, the three senior authors technique was observed by the corresponding first author who confirmed that technique and points of reference were the same for all surgeons.…”