How could our doctor call my baby ‘retarded’ ... and ask if we wanted to abort her at 37 weeks?
NHS made us feel Iris was a nuisance for having Down’s syndrome, say grieving parents
THE grief of Hannah and Ben Day when their baby daughter Iris died at five months old was incalculable. To their heartbreak was added the agonising question of whether her life could have been saved if a vital heart operation had not been delayed three times, as an inquest heard last month.
Still, as they look back now, the parents cherish the memories from every day of Iris’s short life.
But it is a life that would never have begun if they had followed the shocking proposition by NHS staff to abort their baby 37 weeks into the pregnancy because she had Down’s syndrome.
Now Hannah and Ben have spoken to The Mail on Sunday of their horror at being asked to consider ending Iris’s life just three-and-a-half weeks before she was born – and of their disgust when one doctor used the repugnant term ‘mentally retarded’ to describe a child with Down’s.
Last night the Days, a professional couple who met while working in the City, said they felt like they were treated like ‘an annoyance to the NHS’ from the moment Iris was diagnosed with the genetic condition in the 36th week of pregnancy.
Ben, 41, an insurance broker at Lloyds of London, said: ‘From the outset, we felt like we were steered towards an abortion.’
Hannah, 29, added: ‘I just don’t agree with this notion that, if the baby’s not perfect, it shouldn’t be brought into the world. Because Iris was an IVF baby, for us she was our little miracle. She was so wanted – and every day with her was precious.’
The case raises unsettling questions about attitudes towards Down’s syndrome in the NHS, amid concerns that a new, highly accurate pre-natal test for the condition, set to be rolled out next year, could lead to more babies being aborted.
For the couple, the diagnosis came as a bolt from the blue.
Like one in six couples, they had trouble conceiving naturally so turned to IVF, which they paid for due to NHS funding restrictions.
Hannah became pregnant at the first attempt and, as the months passed, all seemed well: scans at 12, 20 and 22 weeks at Southend Hospital in Essex showed nothing untoward.
Then a scan at 36 weeks picked up a problem with Iris’s heart called Atrioventricular septal defect, or AVSD, where there are numerous holes in the heart’s internal walls. The condition is common in babies with Down’s syndrome, so Hannah was offered an amniocentesis test where a sample of amniotic fluid is taken.
Beforehand, they met foetal maternal medicine consultant Mandeep Singh. Hannah recalled: ‘He said to us, “Can I ask what you will do if it’s confirmed that your baby has Down’s syndrome?” ’
Confused, they asked him to explain, and he said: ‘Will you continue with the pregnancy?’
Ben recalled: ‘We were both taken aback. We didn’t even know abortion was an option. It was awful.’
They said Mr Singh did not explicitly mention an abortion–but believed his meaning was clear.
‘ What else could he have been suggesting, really?’ said Hannah.
Ben added: ‘ We were offered a termination at 36 weeks, which is disgusting.’
They made it clear they would ‘ absolutely not’ consider an abortion, a process that would take up to a week. Three days later, a nurse called with the news that their baby had Down’s. They then had another meeting with Mr Singh.
Hannah said: ‘It was in this meeting that he said, “Your child will be mentally retarded.” ’
Ben added: ‘ The way the news was delivered was diabolical. I don’t know anyone who uses that word any more.’
They were then handed a three-page leaflet about Down’s syndrome, which Ben described as ‘abhorrent’. He said: ‘It was a list as long as your arm saying, “These are the things that could be wrong with your child; these are the challenges you are going to face.” Basically, everything we heard from the NHS was very negative.’
Nothing would change their minds, though. Hannah, who describes herself as religious, said she found the thought of terminating so late ‘inhumane’. She added: ‘You’ve felt the baby kick, at this point you’ve had the nursery done – you are on the countdown to D-day.’
But Ben said that if their experience was typical, it was ‘no wonder so many couples end up terminating’
The way the news was delivered was diabolical
babies with Down’s – about 500 in England and Wales each year.
Abortion is legal in England up to 24 weeks, but if there is a substantial risk to the woman’s life or foetal abnormalities, there is no time limit. In one year for which statistics are available, six babies with Down’s syndrome were aborted at 37 weeks or later – the threshold for what is considered ‘full term’.
A parliamentary inquiry into the issue heard parents who choose to keep a disabled child ‘are sometimes treated as selfish and irresponsible pariahs who foisted a disabled child upon society’.
They can face ‘pressure or a feeling of disapproval’ from doctors or midwives ‘as if they were doing wrong by bringing into the world a child who will require extra NHS resources’.
After Iris was born in June last year, she was referred for a heart operation to treat her AVSD at the Evelina Children’s Hospital in London. Guidelines state that surgery should take place between three and six months, with research suggesting babies with Down’s should ideally be operated on sooner er rather than later. However, the he Days felt there was ‘never any ny urgency’ and they were given en November 4 as the earliest st date, when Iris was four-andda-half months old.
But three days beforehand, d, they had to rush Iris to A&E E at Colchester Hospital after r she developed breathing g problems, a temperature and d a rash. She was raced to specialists at the Evelina, where she was treated for an infection for a fortnight before being discharged.
The hospital stay meant her operation had to be rescheduled for November 25. Then, to the family’s huge frustration, it was cancelled again as no intensive care bed was available.
Ben said: ‘I was getting quite angry. We’d been told this operation needed to be done soon.’
She went back to the Evelina for surgery, now set for November 30. But on the eve of the operation it was cancelled once more when a child in intensive care suddenly deteriorated, taking priority.
Hannah said: ‘It was so upsetting, I could hardly speak.’
Iris was discharged without being assessed by a doctor and without an ECG heart test, the Days said. Ben added: ‘This was an ill child, not a tin of beans. It was ridiculous.’
At Iris’s inquest last month, a doctor who reviewed the tragedy said the child who took Iris’s place had been ‘critically unwell’ and the decision was the right one ‘given the evidence at the time’.
The operation was reset for December 9. It was a date little Iris would never see. On December 1, she suffered another bout of breathing problems and her parents took her to Colchester Hospital again.
They stayed by her bed overnight as her condition appeared to improve. By mid- morning, they asked if it was safe for them to go home for a short break and were told it was. Unknown to them, Iris had started to deteriorate at about 8am. Medics also missed warning signs that could have saved her, with a nurse failing f to carry out hourly observations o properly, and failing f to ‘ escalate’ Iris’s care when she should have h done. Driving home, the Days received r the terrible news that th Iris was going downhill fast. f They raced back – only to find she had died. Hannah and Ben said they were w left with a lingering and an uncomfortable impression si that more could have been be done to save her. They T said: ‘We feel that the majority m of NHS staff who came ca into contact with Iris in her short life let her and us down do in the worst possible way. wa As her parents, we were made to feel like an annoyance to the NHS on the day she died – and on every day after she was diagnosed with Down’s syndrome.’ Happily, two months ago Hannah gave birth to another child, Enid, who was conceived naturally. ‘She was a wonderful surprise,’ said Hannah. But the couple will never get over the loss of Iris. Kate Potter, of the Down’s Syndrome Association said: ‘ Unfortunately, quite a lot of parents [of children with the condition] still do report unsuitable and inappropriate behaviour and language use.’ She added that her organisation has built ‘a body of evidence which proves that a significant number of health professionals continue to provide information about Down’s syndrome in a biased manner.
‘Prospective parents have reported feeling pressurised into a termination when being given a very pessimistic view of the life chances of someone with Down’s syndrome.’
All the hospitals involved passed on their condolences to the Days.
Colleen Begg, of Southend Hospital, said: ‘Mr and Mrs Day have expressed their concerns formally to us and we have investigated and responded in detail to all aspects of their complaint.
‘Foetal medicine health professionals are obliged to discuss all available options with parents in Mr and Mrs Day’s situation, and to support and help parents whatever their decisions are, and we do understand that these difficult conversations can be distressing.’
Dr Andrea Turner, of Colchester Hospital, said it had carried out ‘a detailed investigation into the circumstances leading up to Iris’s death’ and had ‘made a number of changes’ on monitoring children and talking to experts at specialist hospitals sooner.
And a spokesman for the Evelina Children’s Hospital said it worked hard to minimise the number of cancelled operations.
Mr Singh did not respond to requests to comment.
Medics let Iris down in the worst way in her short life