East Sussex Healthcare NHS Trust

6. Mrs T complains the Trust did not offer her steroids prior to her c-section on 2 April 2024 to help with her twins’ lungs. She also complains the Trust did not act promptly when C’s oxygen levels were low and discharged C even though he failed the car seat test. Mrs T also complains the Trust were reluctant to provide an ambulance for C to be taken to another hospital (Hospital B) as an outpatient for a procedure on his heart.

7. Mrs T tells us the impact of steroids not being offered meant her c-section was delayed and she ended up going into labour naturally. Unfortunately, Mrs T had a category one emergency c-section which meant her husband was not able to be present for the birth and she could not meet her sons until four hours later. She tells us this caused a lot of distress for her.

8. She tells us how she struggled to recover physically as she had to recover from her c-section whilst also caring for one of her twins at home and visiting the other daily in hospital.

9. Mrs T also tells us she experienced heightened distress and anxiety when her son was discharged because she did not feel reassured that he was safe to travel in his car seat home and to Hospital B after he failed the car seat test.

10. By bringing her complaint to us, Mrs T is seeking acknowledgement of what she and her son went through and a financial remedy.

11. What follows is a brief summary of events to provide context to the complaint.

12. Mrs T had Twin To Twin Transfusion Syndrome (TTTS) and so her consultant had planned a pre-term C-section birthing procedure for her when her twins were at 36 weeks’ gestation.

13. Mrs T arrived early in the morning on 2 April 2024 having fasted, was gowned up and when they asked her if she decided against the steroids she said she had no idea about steroids. She was told to go home and come back tomorrow.

14. The following day she returned but had still not been spoken to about the steroids however had researched them herself at home and decided it was something she wanted. She then had the steroids at 11am and was scheduled for the C-section the following day on 4 April however she stayed in.

15. Mrs T went into labour naturally that night and had to have a category one (emergency) C-section where she was not awake for the birth and her husband could not be present.

16. During discharge preparation her husband noticed a problem with A’s breathing. They raised it to the attention of the Trust staff and A was sent for an echo the next day (5 April). Following this, they were told A had pulmonary stenosis and ASD, which would require surgery. He was also then treated with oxygen.

17. On 13 April A was discharged, though Mrs T expressed concern to staff about this as she was concerned about A being discharged given his heart problem. They did a car seat test to see if he could cope in the car seat for an hour. Mrs T says A failed the car seat challenge as his oxygen dropped towards the end. She says she was told he was fine to go home as they only lived a 25-minute drive away.

18. When A’s surgery date came through for 23 April, Mrs T requested an ambulance to take them as the journey was about one hour and 45 minutes from their home. San ambulance was declined.

19. Mrs T says that after repeatedly asking the Trust to consider what it was asking her to do and how it was not appropriate for her son to be in a car seat that long, it agreed to send an ambulance to transport him to the hospital for surgery.

23. When we look at a complaint we first consider what are the relevant standards or guidelines to inform what should happen. Next, we go onto consider the version of events from all parties. We do so to identify if care fell so far below a standard to be considered a failing (often referred to as ‘maladministration’). If we identify a failing, we consider the impact and injustice on the aggrieved and if we can link this to the failing.

24. Following this we then look to establish what the organisation has done to put matters right for the failing (the ‘remedy’). We also note that not every failing will be maladministration. On occasions this could be a shortcoming. Where we identify so we will make this distinction.

25. If we consider more could be done, we may make a range of recommendations. Though we consider the individual circumstances of each complaint, it is for the Ombudsman to determine remedy that is fair, proportionate and reasonable.

The Trust did not offer Mrs T steroids to help with her babies’ lungs for her planned C-section on 2 April 2024

26. Mrs T says she had a planned C-section on 2 April 2024. She says when she arrived at the hospital that morning, having fasted and changed into her gown and was asked if she decided against the steroids. Mrs T tells us she told the Trust she had no idea about steroids at this point.

27. She was told to go home and come back the day after. She says she then went into natural labour on 3 April 2024 and ended up needing a category one general emergency c-section and did not get to meet her sons until four hours later. Mrs T says this would not have happened if she had been informed about the steroids prior to her planned c-section and had her c-section on 2 April 2024.

28. The following day she returned but had still not been spoken to about the steroids however had researched them herself at home and decided it was something she wanted. She says her consultant came in and apologised steroids had not been discussed with her. She then had the steroids at 11am and would have her C-section the following day on 4 April however she stayed in hospital that night.

29. Mrs T says she went into labour naturally that night and had to have a category one emergency C-section where she was not awake for the birth and her husband could not be present. We appreciate this must have been frightening for Mrs T and not the experience of birth she wanted.

30. In its response, the Trust says steroids should have been offered prior to her preterm caesarean section and sincerely apologises this did not happen. The doctor who Mrs T saw frequently during her pregnancy apologises for this omission. The Trust explains the doctor on the ward on 2 April 2024 recognised this oversight and ensured the steroids were given ahead of her caesarean. It apologises for the added distress this caused Mrs T and her husband. We take this as an indication of failing.

31. We asked our adviser what the impact of the Trust not arranging the steroids prior to Mrs T’s planned section on 2 April 2024. Our adviser says the omission was unfortunate however it does not indicate a failing of maladministration. They explain the use of steroids have clear benefits prior to 36 weeks but not between 36 and 37 weeks.

32. Mrs T was at 36+1 weeks at the time of events.

33. The NICE multiple pregnancy guideline does not specifically recommend a routine course of antenatal steroids for planned delivery at 36 + 0 weeks in MCDA twins (twins who share one outer membrane surrounding the embryo and have a single placenta and has the highest risk of TTTS). It states antenatal steroids should be offered as part of anticipation of preterm or early birth, rather than as a standard routine intervention at that late gestation.

34. NICE’s guidance is driven by evidence that untargeted steroid use beyond the usual preterm period does not improve outcomes and may expose infants to unnecessary risks when birth is at later gestations.

35. RCOG (guideline 74) does not recommend routine use of antenatal corticosteroids between 35+0 and 36+6 weeks’ gestation. It may be considered if there are specific clinical reasons to think the babies would benefit, such as respiratory concerns. This was not the case for Mrs T’s pregnancy.

36. Having reviewed the guidance above, it appears to show the twins would not have benefitted from the steroids for the planned c-section at 36 weeks’ gestation. We understand being informed about the steroids during her pregnancy is important to Mrs T and we do not wish to take this away. It is our view this was a shortcoming in the care provided and likely an indication of human error.

37. We can see the Trust has apologised for its omission. Our NHS complaint standards state organisations should give sincere apologies when things go wrong and provide explanations. These guidelines also encourage staff to be accountable for their actions. We are satisfied the Trust has acted in line with this guidance.

38. Our approach is to look at if there is a failing based on guidelines. Had the Trust and Mrs T had a discussion about the use of the steroids, it is unlikely, from the clinical advice we have obtained, that the outcome would have been the use of steroids. As an organisation independent to all parties, we seek to reassure Mrs T that the course of events would unlikely have been different owing to her being at 36+1 weeks. The injustice this leaves is Mrs T’s distress and worry.

39. We appreciate Mrs T experienced distress and recognise her concerns were both valid and understandable. We would not be able to link any physiological matter. This then leaves the emotional impact for us to consider.

40. We have identified Mrs T was left for 24 hours without knowing whether to agree to the steroids or not. We consider this injustice and impact flows from the failing identified.

41. To help determine severity we rely on a range of methods. Firstly, we refer to the Ombudsman’s severity scale (Severity of Injustice, SOIS). This is an open published scale that explains how we approach severity and remedy and is made up of six bands ranging upwards in impact. The scale starts at level one where we may see mild to moderate failing that is relatively short lived, often one-off occurrences lasting no more than (up to) two weeks. At the top end of the scale (level six) we may see avoidable death, profound life changing events and where the aggrieved may have their normal day to day life significantly compromised.

42. We have listened and engaged with Mrs T to better understand her lived through experience. It is our view this sits at the level one on the severity scale. We understand the uncertainty, worry, upset and distress Mrs T faced was for a relatively short duration, certainly not going beyond a couple of weeks. The distress and worry Mrs T had about the use of the steroids from 2 April to 4 April falls into this level. We consider the apology from the Trust an appropriate remedy.

43. We then conduct precedent checks and use our own typology of injustice to look at similar complaints we have upheld and the type of recommendations we have made. Precedent checks also allow us to consider if the complaint is indicative of wider failings that could suggest systemic issues.

44. Having done so, we have not identified wider matters. We consider this shows a shortcoming that likely may have occurred though human error, an omission and for this level of failing an apology is enough and against the NHS Complaint Standards we consider the Trust has taken ownership accepted failing and offered a fair, proportionate and reasonable apology. We therefore feel the Trust has done enough to put right its error in not discussing the steroids with Mrs T and will not be taking this part of the complaint further.

The Trust failed to promptly act on C’s low oxygen levels.

45. Mrs T tells us she thinks the Trust failed to notice C was struggling with his breathing in a timely manner. She tells us it was her husband who noticed. Mrs T explained in her birth debrief on 11 December 2024, she found out that on the birth checks, staff did notice his oxygen levels were lower however in SCBU no action was taken.

46. She says because the twins had Twin To Twin Transfusion Syndrome (TTTS), she wanted the boys to have a thorough check and did not feel this happened. C had an echo and was found to have a heart problem.

47. Mrs T says she experienced a lot of distress at this time. She was not able to recover from her c-section and visit her son daily in the hospital, whilst caring for the other twin at home.

48. We investigated the clinical records taken contemporaneously (at the time of the events) to better understand the emerging clinical picture. The records show staff admitted C to Special Care Baby Unit (SCBU) for grunting and respiratory distress around eight hours of age, after he was reviewed in the postnatal ward. The records state C had low blood sugar levels and this was treated with dextrogel, feeds and antibiotics. He was discharged back to Mrs T’s care. He was seen again around 20:00 on 4 April for a possible choking episode. Trust’s staff noted C had ongoing low blood sugar levels. He was also noted to have a loud murmur and so he was admitted back to SCBU.

49. We asked our adviser what should have happened post birth for C. Our adviser says the Trust risk assessed C and appropriately identified as a high risk for prematurity and hypoglycaemia (low blood sugar) and was put under the Bobble Hat pathway for monitoring in line with Trust guidelines. Bobble Hat pathway is a system used to monitor babies at risk of clinical deterioration following birth and provide a standardised observation for monitoring clinical progress and feeding support.

50. Our adviser also explained TTTS following laser ablation (a minimally invasive surgical procedure used to treat TTTS) does not increase the risk of the babies having low oxygen levels and as such do not need additional monitoring for this.

51. We appreciate Mrs T was apprehensive following the birth of her twins having gone through a worrying pregnancy and can understand she felt additional monitoring should have been given to her twins considering the TTTS.

52. Our adviser has explained the records indicate that the Trust closely monitored C’s observations and saturation levels when he was in SCBU. C had a heart scan (ECHO) performed for the loud murmur and following the diagnosis of cardiac problem, the team liaised with specialist cardiac team and had a clear plan of monitoring C’s saturations and actions to start prostaglandin infusion if his saturations were lower than 90%. All the actions undertaken by the team while he was an in-patient in SCBU was in line with advice provided by the cardiac team.

53. GMC guidance guides medical staff to provide a good standard of practice and care. It states how colleagues should consult and seek advice from suitably qualified practitioners.

54. The Trust had sought advice from the cardiac team and followed this advice. The Trust has done what we would have expected them to do.

55. We appreciate Mr T identifying C’s breathing issues caused Mrs T to feel the Trust were not acting promptly in providing him with the right care and treatment.

56. From the evidence available, we can see the Trust has followed the correct relevant clinical practice in its care and treatment for C regarding his low oxygen levels. We can also see the Trust has acted in line with GMC guidance by seeking and following advice provided by the cardiac specialist team at Hospital B.

57. As we have not identified a failing we would take no further action on this complaint part.

The Trust discharged C even though he failed his car seat test.

58. Mrs T says C failed his car seat test the morning before he was discharged. She tells us how this caused her, as a new mother, heightened anxiety. She says she did not feel reassured her son would be safe in the car journey home.

59. Mrs T says C failed the car seat test because his oxygen was too low. She says due to space the Trust needed C to be discharged. Mrs T tells us she pleaded with staff to let C stay until he had his appointment at Hospital B in a week’s time.

60. During our investigation we understand the Trust indicated that C’s oxygen saturations remained at an acceptable level for the first 45 minutes of the car seat challenge. It states C’s saturations dropped below 90% during the final five minutes. The records also indicate C passed the car seat challenge. Once C was removed from the car seat, his oxygen saturations returned to within normal limit. Trust staff made the decision that given Mrs T’s home was 30 minutes away, it was safe for C to travel this distance in his car seat.

61. The Trust also explains the car seat challenge is not a definitive test of safety but rather a teaching aid to help parents understand safe positioning of their baby’s airway and safe sleep practices. It advised that a parent should sit next to the baby while traveling, monitoring their breathing and colour, and stop if any concerns arise. It apologises if staff did not provide her with adequate reassurance.

62. From speaking to our independent adviser, we recognise there is not a universal standard to consider ‘what should happen’ here regarding observations and tests when clinically considering the safe discharge of preterm infants.

63. In the absence of this standard, our adviser notes in their professional reasoning the car seat test showed no clinical concerns about C’s journey home.

64. We appreciate doing this car seat challenge can cause undue parental anxiety about the safety of transporting infants in a car seat.

65. We are reassured to note the Trust apologised for the quality of their communication regarding this matter (but must note communication specifically is not a part of our investigation). We recognise this would undoubtedly have been a time of anxiety and worry. We have not seen an indication that a specific national standard test was performed and failed and we will therefore not be considering this part of the complaint further.

66. What we do recognise is that the Trust engaged with Mrs T in a test to support discharge and provided some basic safety netting concerns what to do if the condition of child declined during the journey.

The Trust were reluctant to provide an ambulance for C to be taken to another hospital.

67. Mrs T says C had to travel to Hospital B for a procedure following his discharge. She tells us she asked the Trust to provide an ambulance, but it was reluctant to do so.

68. Late on in our consideration of the complaint, we noticed Mrs T had not yet raised this part of her complaint with the Trust. We wrote to the Trust to explain this part was in Mrs T’s complaint. The Trust agreed we could include it in our consideration of Mrs T’s case without it responding to the complaint.

69. We asked our adviser what should have happened in C’s situation. They explained guidance for the transfer of babies with cardiac problems to specialist centres depends on the underlying condition. It is decided on a case-by-case basis following discussion and review of scans.

70. Our adviser says the records indicate on 11 April the cardiology team advised, following discussion with the interventional Radiology team, C’s pulmonary stenosis was not critical. It states the team were happy for C to be discharged home with parents on 13 April and attend Hospital B as an outpatient for the procedure on 22 April.

71. As previously mentioned, GMC guidance states doctors should seek the advice of specialists.

72. In the absence of national guidelines and based on the evidence available to us, we feel the Trust have acted in line with GMC guidelines. We feel it was acceptable for the Trust not to provide an ambulance to be transported as an outpatient and will therefore not be taking this part of the complaint further,

73. Mrs T tells us she pleaded with the Trust to provide an ambulance to transport C to Hospital B. We are sorry Mrs T experienced heightened stress and anxiety and appreciate she felt as though her son was not safe.

74. We want to thank Mrs T for her time and effort in bringing her complaint to us. We wish her, her husband and her twins well.

1. We have carefully considered Mrs T’s complaint about East Sussex Healthcare NHS Trust (the Trust). We are sorry to hear of the difficult and distressing time Mrs T had at the end of her pregnancy and postnatally with one of her sons.

2. Based on the evidence we have considered about the Trust not offering steroids prior to her planned caesarean (c-section), we feel the Trust have done enough to put right this part of Mrs T’s complaint. We have explained our reasoning below.

3. We have considered the evidence about C’s care and treatment following his birth and have seen the Trust has acted within guidance when providing C with the appropriate care and treatment.

4. Regarding the provision of an ambulance, we have found the trust gave individual case-by-case consideration to transportation between hospitals and have not identified a failing.

5. We recognise how important this complaint is to Mrs T, and we would like to take this opportunity to thank her for bringing her complaint to our attention. We hope our explanations below show how we have considered this complaint and provides reassurance that the Trust followed relevant guidelines.