‘Becky’, 27

‘Becky’s son ‘Arnie’ was born with a serious condition that made him critically unwell and caused his tragic death at two months old. The condition should have been picked up during Becky’s pregnancy, providing her with the option to end it humanely and spare ‘Arnie’s’ suffering together with her trauma of giving birth and witnessing her son’s pain and tragic death. 

Becky and her partner ‘Paul’ asked the specialist medical negligence team at JMW for advice and their case was taken on by solicitor Lucy Mellor. With Lucy’s help, Becky and Paul were able to challenge the hospital’s failings, resulting in them receiving an official apology and £26,500 in compensation. 

What went wrong? 

Becky and Paul were happy to discover that they were expecting their first child. However, sadly, some abnormalities were found when Becky had a scan during the 13th week of her pregnancy. The sonographer (the person carrying out the scan) noticed there was an abnormally high amount of fluid around Arnie’s neck, chest and abdomen. Becky was told that this could be a sign that Arnie would be born with Down’s Syndrome and some of Becky’s blood was taken for testing. The news came as a huge shock to Becky and Paul, and although they were initially very distressed, they both agreed that they would still go ahead with the pregnancy. Both partners had friends with Down’s Syndrome who led fulfilling lives and so they were confident that they would cope. Becky and Paul did not discuss what they would do if their baby was diagnosed with a condition other than Down’s Syndrome. 

A couple of days after the scan Becky received a phone call from someone at the hospital. She was told that there was a high chance her baby would be born with Down’s Syndrome. Becky was also told that her blood test had not shown anything to suggest that there was a risk that Arnie would be born with any other conditions. The same week, Becky had another scan, this time with a senior doctor specialising in pregnancy and birth (consultant obstetrician). The doctor said that the fluid around Arnie’s neck and abdomen had gone down a bit but still remained high and so a further test for Down’s Syndrome could be carried. This test is called amniocentesis. An amniocentesis is where a needle is inserted into the womb to obtain a sample of the fluid surrounding the baby, which is then tested. Amniocentesis gives a good indication of whether a baby has Down’s Syndrome but is not 100 per cent accurate and also carries a one per cent risk of causing a miscarriage. This was a risk that Becky was not prepared to take, and as she and Paul had agreed that they would go ahead with the pregnancy if their baby had Down’s Syndrome, amniocentesis seemed pointless. 

Becky went back to hospital for a third scan a week later and was told that whilst the fluid that was giving cause for concern had reduced further, it was still abnormal. Becky was told that Arnie’s heart was too small to be assessed and that this would need to be checked again with another scan at a later date. The amniocentesis test was once again mentioned, and Becky repeated that she was not interested in this. 

A month later, Becky had her fourth scan. This time Becky was told that all of Arnie’s organs were visible, but the sonographer was unable to see his spine. Becky was not made to feel that this was a particular issue and she felt more relaxed overall about her pregnancy. The next scan Becky had was a growth scan when she was told that everything looked normal. 

Baby born with serious condition 

Not long after the growth scan, Becky had her sixth scan with the consultant who had overall responsibility for her and Arnie’s care and with whom Becky had attended scans previously. During the scan there was a part of Arnie’s heart that could not be seen. However, Becky was told not to worry and that she would be given another scan in two weeks’ time.

A week after this scan, Becky developed abdominal pain and went to the hospital to have it checked out. Hospital staff believed Becky to be at risk of premature labour and she was admitted for monitoring and given steroid injections. Another scan the following day revealed that there was still an abnormally large amount of fluid around Arnie (polyhydramnios), but Becky was not told about this at the time. 

Three days later Becky was discharged, but the abdominal pain returned five days later, and she was readmitted. Three days later Becky’s waters broke, and she gave birth to Arnie not long after. Arnie was taken to the special care baby unit and the next day was transferred to a more specialist hospital for unwell babies. Becky and Paul were given the news that Arnie required surgery because he had a bilateral diaphragmatic hernia (a large hole in the muscle which allows you to breathe). They were told that the condition was life-threatening, impacting Arnie’s ability to breathe normally. The hole also meant that many of his organs were in the wrong place. Despite the operation, Arnie tragically did not make it and he died two months later. Becky found the whole experience of watching Arnie undergo major surgery, suffer, and die extremely traumatising. She could not understand how something so catastrophic could have been missed due to all of the scans she had throughout her pregnancy.   

JMW’s investigation 

After assessing everything that had happened, our specialist medical negligence solicitor Lucy Mellor agreed with Becky and Paul’s concerns that the signs of Arnie’s hernia should have been picked up earlier. After consulting independent medical experts specialising in the care of babies both in the womb and post-birth it became clear that, although there was no treatment that could have been offered to Arnie over and above what had been given after his birth, there were clear failures in the screening process during Becky’s pregnancy.

The experts Lucy instructed analysed the scans taken during Becky’s pregnancy and found that the images taken during one of the later scans showed several abnormalities consistent with a diagnosis of bilateral diaphragmatic hernia. The consultant who carried out the scan should have picked this up. Furthermore, at Becky’s last scan prior to Arnie’s birth when the ongoing presence of a large amount of fluid was noted, this was not acted on, and guidelines regarding the management of such a significant screening finding were not followed. 

As a result of these failings, Becky was not made aware that her baby had a life-threatening and life-limiting condition, and she was not informed about the options and support available to her. Her choice about whether to give birth to Arnie, knowing that he would be seriously ill and would likely suffer, was taken away from her due to the hospital not following the relevant guidelines. This type of case is known as a ‘wrongful birth’ case because Becky may have opted to spare Arnie’s suffering with a painless termination. There are support services that exist to help families affected by this issue, and access to their services and the appropriate care, would also have reduced Becky’s psychological suffering.