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Image of Marie Downey and her newborn son Darragh. Family of Marie Downey

Husband says wife and newborn son may not have died if epilepsy guidelines had been followed

Marie Downey died following a sudden epileptic seizure at CUMH in March 2019.

A MAN WHOSE wife and four-day-old son died at Cork University Maternity Hospital (CUMH) has told their inquest that he believes that they would still be alive if the medical condition of his “soul mate” had been properly monitored and treated.

Mother-of-three Marie Downey (36) who lived in Knockanevin near Kildorrery, Co Cork died following a sudden epileptic seizure in her private room at CUMH on the morning of March 25 2019.

She was expected to be discharged from hospital that day with her newborn baby Darragh. Her husband Kieran indicated that she was in a great mood in the days after the birth and that her only concern was picking a name for their son.

Their two sons James and Sean had seen their new brother and were “hyper” with anticipation about him coming home with Marie.

Marie Downey was found partially out of her bed shortly after 8am on March 25 2019 with baby Darragh critically injured under her.

Despite medical intervention, Darragh passed away the following evening. The inquest heard that Marie’s legs were on the bed but her torso was on the ground.

She had a laceration to her tongue which medics attributed to an epileptic seizure. Mrs Downey had suffered a postpartum haemorrhage while delivering her son losing up to a fifth of her blood but had appeared to recover well from the traumatic birth.

Her husband Kieran told the Coroners’ Court in Cork that the day his wife died was his birthday and that his plan had been to collect her as she was due to be discharged from hospital. He had dropped their “excited” sons to crèche that morning.

Marie Downey first started experiencing seizures in 2008. However, Mr Downey stated that her general health was good and her seizures were rare.

She was “very diligent” in taking her anti-convulsant medication and her condition never affected her life.

Mr Downey stated that his wife was employed in Novartis pharmaceutical in Ringaskiddy and was a loving wife, mother and daughter who enjoyed sport.

Mr Downey gave evidence that he received a phone call from the hospital on the morning of March 25 2019 to come and bring somebody with him.

Initially he thought that the call involved him registering the name of the baby but alarm bells went off when he was informed that he needed to have a person accompany him. The call made him “panicky.”

He tried to call his wife’s phone but it went unanswered. When he went to CUMH he was taken into a room and informed that his wife Marie was dead and that his son Darragh was also injured.

Mr Downey stressed that his grief was exacerbated by the fact that whilst Marie’s postmortem was carried out in Cork, Darragh was sent to Dublin to be examined.

“Darragh was sent to Dublin which was horrific. We didn’t know if we would be able to have a funeral with Darragh and Marie together,” he said.

Mr Downey told Coroner Philip Comyn that he believed the deaths of mother and baby could have been prevented if there had been better communication between medics about her epilepsy.

“There is a whole list of things that should have been done that weren’t and if they were we would be sitting at home without a care in the world. The circumstances of their deaths could have been prevented at many different points along the way. ”

Mr Downey expressed his belief that there was a lack of communication between the obstetrician and the neurologist treating his wife in relation to her care and the dangers posed by her epilepsy.

He felt he was “drip fed” information after the death of mother and son and that the versions of the story “kept changing.”

He said that his wife rang the bell for help from her private room nine times between midnight and 3.30am in the hours before she died.

The inquest heard that midwives responded to the calls. However, Mr Downey stated that his wife’s private room was the second last room away from the nursing station and that he didn’t feel she was a priority.

Mr Downey gave evidence that he was shocked to find out after his wife’s death that she had experienced epileptic seizures three days after she had their son Sean in 2016. Mr Downey felt “hit by a tonne of bricks” when he came across this information.

”From reading the draft HSE report there was a note which turned my stomach completely. This was a line where it was stated that on the 3rd day postpartum after Sean that Marie may of had an epileptic event and that was news to me as it was never communicated to me.”

He stated that this was “soul destroying” news as it would have had a bearing on how she was treated in her next pregnancy.

“It seemed to have been known [in the hospital] and yet two and a half years later we were in the same position.”

Mr Downey said that there was a distinct lack of communication amongst medics about his wife’s condition of epilepsy.

“If there was communication between Dr Keelin O’Donoghue [obstetrician] and Dr Peter Kinirons [neurologist] and between both of them and midwives we wouldn’t be here today.”

Mr Downey said his wife and son were “completed forgotten” by the hospital. Six weeks after their deaths he looked up the Maternity Patient Safety Statement for March of 2019 and found that the deaths of his loved ones hadn’t been recorded.

He admittted that he was shocked by what he perceived as a “lack of transparency” by the hospital.

“If you can’t even do basic recording how can anyone trust the system? It is not giving the correct facts that two people died and it doesn’t show any transparency. I looked at it, because my wife and child should have been shown on it [maternity patient safety statement)]six weeks after the event.

“It’s a box-ticking exercise. These were people. They are our loved ones. They could be anyone’s loved ones and they were not given the respect to record the factual information to be presented to the public.”

Record

Conor Halpin, SC for CUMH, apologised to Mr Downey for the failure to record the deaths in the hospital’s monthly patient statement statement for March 2019. However, he said the deaths were reported to the National Register of Perinatal deaths.

Mr Downey was of the opinion that there were a lot changes in regard to the story of what occurred in the hours before the tragedy unfolded.

“I questioned the fact that I saw Marie’s signature on the chart at 3.30am and that she had written down, “breastfed left breast.” The Review committee said that they would
look into it and then they came back and they said that Darragh would have been taken away from 3am to 7am, so she [Marie] would have got ample sleep.

“I would have thought that four hours was reasonably good sleep to get. But I asked to check the CCTV and again after another review meeting they told me that Darragh was actually taken away at 3.59am, almost four o’clock in the morning, and had been returned to Marie at 6.34am, so two and a half hours sleep, which shocked me.

“I suppose because lack of sleep and exhaustion are reason why Marie certainly got seizures. So I wouldn’t have thought she would ring the bell after such little sleep to feed Darragh when it was not required.”

Mr Downey said that he had no faith in the HSE and that implementation plans to prevent perinatal deaths “meant nothing.”

He added that Marie had expressed apprehension about breast feeding in relation to having epileptic seizures but that she was “left to breastfeed alone” after a traumatic birth where she experienced significant blood loss.

He also told the inquest of his disappointment at the decision by Professor John Higgins, the clinical director of CUMH, not to attend the inquest even though he sent him a letter requesting his presence.

Midwife

Midwife Chloe Kelleher said she started on the night shift at CUMH the night before Marie died.

Mrs Downey made of a number of calls to midwives during the night but Miss Kelleher stated that this wasn’t unusual for mothers of newborns who often require assistance with breastfeeding.

She was aware that the patient was self administrating her medication for epilepsy. She said Mrs Downey’s calls were answered by the three midwives working that night.

At 3.13am she offered to take baby Darragh to the nursery so that Marie could get some rest. She brought Darragh to the nursery where she gave him a bottle at 5.30am.

She returned baby Darragh to his mother at around 6.30am and Marie was awake and sitting up.

Marie told the midwife that she was happy and comfortable and Ms Kelleher told her that she didn’t need to feed Darragh for a while.

She wished Mrs Downey well, anticipating her discharge that day. At 8.05am she recalled hearing a “commotion” with Dr Keelin O’Donoghue calling for help.

She told Coroner Philip Comyn that staff went to the assistance of mother and baby and that she was “very upset” by what had occurred.

She was personally responsible for the care of six post natal women, five babies and one ante natal mother during her night shift that evening. This was a normal workload, she indicated.

Doireann O’Mahony, junior counsel for the family, said that it would have been helpful if midwives had been given proper notes in relation to Mrs Downey’s previous pregnancies and notified of the fact that tiredness was a trigger for her seizures.

Dr Ronan Kilbride, the National Clinical Lead of the HSE Epilepsy Programme, reviewed the case.

He said that the postmortem completed by Dr Margaret Bolster indicated that it was reasonable to deduce that Mrs Downey had an epileptic seizure just before her death.

He told the inquest that Mrs Downey would have become suddenly ill with no awareness of what was occurring.

He stated that having reviewed the case there was significant need for co-ordinated specialist care for pregnant women with epilepsy and specialised neurological support.

Dr Kilbride stated that pregnancy is a time when epilepsy can become very active for women whose epilepsy is ordinarily under control.

He told the inquest that 48 hours to 72 hours after delivery is a high-risk period for seizures due to falling hormone levels.

Dr Kilbride also stated that towards the end of pregnancy the kidneys massively increase their capacity to clear epilepsy medication from the body.

As a result women often require an increased dosage of anti convulsant medication as their pregnancy progresses. Mrs Downey’s dosage had not been increased during her pregnancy.

Dr Kilbride said that it was his belief that that tragedy occurred because of “missed opportunities” in relation to the care of Mrs Downey and a “lack of communication between health care providers” and a “lack of a formal plan.”

He also said that it was his belief that there should be no self administering of medication amongst patients of epilepsy who are in hospital given the risks involved to their health.

He added that there should be input from a neurologist for any woman with epilepsy when she delivers a baby.

“Right through the 40 weeks of pregnancy there is relevant aspects of care for a woman with epilepsy that should have some input [from a neurologist.

“I would overall support the notion that medication should be supervised. Marie and Darragh’s passing undoubtedly represents inconsolable loss of their family.

“However, the lessons learned here as a result of this review and inquest can serve as an opportunity to improve the health and safety for women with epilepsy in Ireland.”

The inquest before four men and three women will continue tomorrow.

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