12. The Trusts issued a joint response to Mr A and upheld his complaint about the failure to identify during pregnancy the lack of development of Baby A’s kidney. The Trusts said their sonographers reported seeing two kidneys during numerous antenatal scans but an independent review of the scans carried out later found that two kidneys were not convincingly seen on all the scans, most notably during the scans of 30 May and 13 June 2022.
13. The Trusts have apologised to the family for this failing and shared the findings from the investigation and independent review with their sonography teams to improve their service and reaffirm the importance of ensuring all structures are accurately reviewed and identified during antenatal scans.
14. The complaint we have investigated is Mr A’s view that there were two significant impacts resulting from this failing. Mr A says the failure to identify the lack of development of the second kidney during pregnancy meant the family were unable to prepare for the impact of their child being born with only one kidney. Mr A says his child may not have died if the Trusts had identified the lack of development of the second kidney during pregnancy.
Missed opportunity to discuss the findings with the family
15. The SMFM guidance recommends that suspicion or diagnosis of unilateral renal agenesis should prompt counselling regarding the prognosis. In their response the Trusts say if the failings had not happened and the lack of development of a second kidney had been identified during pregnancy, this would not have led to discussions with the family to prepare them for the possibility their child may die shortly after being born as this would not have been the expected outcome. The Trusts said the outcomes for unilateral renal agenesis are generally very good and do not affect the quality of life or life span in the majority of cases.
16. Both our advisers said the Trusts’ view can be supported by information published by various appropriate societies. The SMFM guidance states the outcome for a baby identified with renal agenesis during pregnancy is ‘favourable’ and the Fetal Medicine Foundation information on fetal renal agenesis describes a ‘normal prognosis’ following such a diagnosis.
17. The International Society of Ultrasound in Obstetrics & Gynaecology’s information on unilateral renal agenesis says:
‘Many children with unilateral renal agenesis will not have long-term problems. The other kidney usually grows larger to help do the work of two kidneys. A small number of children may be at higher risk of problems later in life. These include vesicoureteric reflux (a condition in which urine flows backward from the bladder into the ureters and sometimes to the kidneys), hypertension (high blood pressure) and proteinuria (protein in the urine). Your baby will need a follow-up renal scan in the neonatal period to exclude any abnormality of the contralateral kidney. The baby should be able to do all the things other children their age do. He or she can go to nursery and school, play with other children and stay active.’
18. The British Association for Paediatric Nephrology’s information on unilateral renal agenesis says:
‘Most people have no long-term problems with unilateral renal agenesis, and some do not even know that they have only one kidney. Sometimes children with unilateral renal agenesis have an abnormality in the other kidney. This may include renal hypoplasia or renal dysplasia. Part or all of the kidney does not develop properly and is smaller than usual. The kidney can usually clean blood and make urine, but may not work as well as a kidney with no abnormality.
If the other kidney does not work normally, your child may have reduced kidney function. They may be at greater risk of progressing to later stages of chronic kidney disease (CKD) and will need more monitoring.’
19. We carefully considered Mr A’s view that the failure to identify the lack of development of the second kidney during pregnancy meant the family were unable to prepare for the impact of his child being born with only one kidney. We acknowledge Mr A’s account of how upsetting it was to find this out a few days after his child was born. We think identifying this sooner would have led to discussions between the Trusts and the family about the impact unilateral renal agenesis would have on Baby A’s care, treatment and prognosis and we partly uphold this point of complaint.
20. We partly uphold this point because we think discussions at this point would have been helpful for the family, however we are unable to say the discussions would have provided information to them which may have better prepared them for the deterioration Baby A suffered shortly after his birth or his death.
Missed opportunity for additional care and discussion
21. In their response DG Trust said an antenatal diagnosis of unilateral renal agenesis does not change the management of pregnancy or the immediate care provided after birth. DG Trust said the failure to identify the lack of development of a second kidney during pregnancy had no impact on the care it provided to Baby A before or after they were born and the treatment would not have been different if it had been identified during pregnancy.
22. DG Trust said if renal agenesis had been identified during pregnancy the only additional action that it would have planned would have been for a further ultrasound scan at six weeks of age to check the remaining kidney and its function.
23. The SMFM guidance recommends that suspicion or diagnosis of unilateral renal agenesis should prompt:
• A careful assessment of the urogenital system (other kidney and bladder), and other organ systems • Consideration of genetic testing if additional anomalies were identified • Referral to a specialist with expertise in neonatal renal disease to arrange further investigation after birth
24. Our obstetrician adviser said the records indicate the Trusts did undertake an assessment of Baby A’s other organ systems and no other anomalies were identified. Our obstetrician adviser said there is no suggestion in the records that Baby A had any additional congenital anomalies that would have led to consideration of additional genetic testing.
25. Our obstetrician adviser said, in line with the standards set out in the SMFM guidance, identifying renal agenesis during pregnancy should have prompted the Trusts to refer Baby A to a specialist with expertise in neonatal renal disease for further investigation after they were born. As the renal agenesis was not identified during pregnancy the Trust missed the opportunity to make this referral, however Baby A’s condition deteriorated in the days following birth before such investigations would have been carried out.
26. Our nephrologist adviser said there is no national guidance in place for managing congenital single kidney however the NHS renal anomalies guidance supports the Trusts’ response, and our obstetrician’s advice, about the impact this failing had on Baby A’s neonatal care. The NHS renal anomalies guidance confirms that even if a single absent kidney was identified on the antenatal scans, that finding alone would not have necessitated additional specialist care during the delivery and the only additional action that would have been taken would be for additional ultrasound scans at around 4-6 weeks of life.
27. Although we agree with DG Trust’s view that antenatal diagnosis of unilateral renal agenesis does not change the management of pregnancy or the immediate care provided after birth, DG Trust also said if after they are born a baby who is suspected of or diagnosed with renal agenesis displays difficulty passing urine or feeding issues, urea and electrolytes (U&E) blood tests would be performed after 24 hours of age to check their renal function. As Baby A’s renal agenesis was not identified until after he was born these tests were not performed at this point in Baby A’s case.
28. The records indicate Baby A experienced difficulty feeding following his birth and our nephrologist adviser said while the feeding issues may have been attributed to being a twin, or low birth weight, if DG Trust had identified Baby A only had one kidney on the antenatal scans, the subsequent feeding issues would have led to additional U&E blood tests to check the function of the remaining kidney at 24 hours of life. We partly uphold this point of complaint.
29. We partly uphold this point because our nephrologist adviser said there is no evidence in the records to indicate U&E blood tests at 24 hours of life would have had any impact on Baby A’s outcome or that they would have led to additional treatment that may have prevented their death. However such tests may have alerted the clinical team to the failure of the remaining kidney earlier and discussions may then have been held with the family about the implications, prognosis and treatment options sooner.
30. We acknowledge the impact the failure to identify the lack of kidney development on the antenatal scans had on Mr A and his family with regards to their knowledge of Baby A’s condition and the missed opportunities that resulted from these failings to discuss this at significant points during this incident.
31. It is clear from the evidence we have seen that Baby A was born with a single kidney and shortly after birth this kidney started to fail. Our nephrologist adviser said even if the kidney problems had been identified sooner there would not have been any intervention or treatment which could have improved Baby A’s condition or prevented their death.
32. The records indicate once the poor function of the remaining kidney was identified DG Trust referred Baby A to the paediatric nephrology team at Birmingham Children’s Hospital who discussed dialysis with the family. Our nephrologist adviser said dialysis in very small infants like Baby A is technically very challenging and has a significant morbidity and mortality risk in itself. Our nephrology adviser said it was therefore appropriate for the paediatric nephrology team to discuss this with the family and for a joint decision of palliative care to be taken.
33. We found no evidence to indicate antenatal detection of the poor development of Baby A’s kidney during pregnancy would have prevented his death.