The mother of a baby with Down’s Syndrome claims she was left feeling suicidal when she says she was advised to terminate her pregnancy before her daughter’s condition was confirmed.
Hetty Blakey gave birth to baby Poppy on November 2, 2021, and has overcome obstacle after obstacle throughout her pregnancy and in the three months since her daughter’s birth.
She feels let down by Lincolnshire hospitals over her daughter’s care – including Lincoln County and Diana Princess of Wales Hospital in Grimsby – and said she was told to consider changing her address to be closer to specialist care.
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The trust that runs Grimsby’s hospital has confirmed it is investigating a formal complaint and the Lincolnshire hospital trust says it is liaising with Poppy’s family.
Along with feeling “pressured” into terminating her pregnancy at Lincoln Hospital, Hetty said she was told by Grimsby hospital that the heart consultant could not see her daughter – who was at risk of immediate heart failure.
She also claims Poppy was given the wrong immunizations, leaving the then eight-week-old baby bleeding from her behind and spending time in A&E.
Hetty, who previously lived in Lincoln, had her initial 12 week scan at Lincoln County Hospital.
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She said: “From the scan, we were given a leaflet on abortion and told that it didn’t look good, and that with the amount of [nuchal translucency] fluid, there was a chance that the baby had something very severe.
“They handed me a scan picture and lulled me into this really depressed place of, ‘This baby’s not going to live’. That was before any diagnosis was made. It was just purely off of a scan.
“All babies have this fluid at the back of their neck, and in a baby that doesn’t have any chromosome abnormalities, the measurement would usually be between one and two millimetres. But a baby that has a chromosome abnormality, their measurement would normally be above three.
“So because the thickness was so high – in our case it was 6.7mm – that was enough for us to be handed an abortion leaflet.”
The couple then sought private healthcare at the Harley Street Hospital in London, and Hetty underwent CVS (chorionic villus sampling), a procedure which detects fetal abnormalities.
It was there that she was told her unborn baby had Down’s Syndrome.
She continued: “[The baby] looked perfectly healthy and they didn’t feel there was a reason to medically terminate the baby at all.”
Hetty said that in the first week after hearing the news, she felt like her baby was “gone”.
“I had feelings of embarrassment, shame, and I thought that I was going to be laughed at. Me and my partner were really upset, but it must’ve taken about seven days for us to snap out of it and get things organized, and just fall in love with the pregnancy again.”
Hetty said that she would have made the decision to terminate the pregnancy had she followed the advice given at Lincoln Hospital and not sought a second opinion.
She continued: “I would’ve aborted Poppy based on the information I was given at Lincoln Hospital. They made it feel like it was the most fair thing to do. It was not a case of, ‘She might have something wrong with her ‘But it could be OK’, there was no happiness to it.It was just very much a case of preparing yourself.
“I felt really hurt and disregarded. I drove on a bypass absolutely hysterical, alone, because my partner was in London that day. But I was incredibly suicidal.
“After that day, they never contacted me again. I wasn’t even called to see if I was OK,” she claimed.
“Poppy was nearly not here as a result of their advice.”
It was after the diagnosis that the expecting couple decided to move to Kirmington, on the outskirts of Grimsby, and their care was transferred to the Diana, Princess of Wales Hospital.
Hetty also suffered with polyhydramnios, a rare condition in which there is an excessive amount of amniotic fluid.
A heart defect in her unborn baby was also detected, something which occurs in around half of all Down’s Syndrome babies – along with duodenal atresia, a condition in which the stomach is not attached to the bowel.
“At this point, we were classed as a very high-risk pregnancy and Grimsby could no longer deliver Poppy,” Hetty said.
The couple were referred to two different hospitals: Leeds Children’s Hospital for Poppy’s heart defect, and Sheffield Children’s Hospital for Poppy’s duodenal atresia. They were also sent to Scunthorpe General Hospital for fetal medicine.
At 30 weeks pregnant, Hetty had to choose between giving birth at Grimsby hospital and being taken in an ambulance two-and-a-half hours away to Leeds, or move elsewhere for the remainder of her pregnancy.
“[Going in an ambulance] ran the risk of, if anything happened with Poppy, she wouldn’t have the specialist care right there, and there wouldn’t be anyone who could work on her heart immediately. So we had to basically up and move.”
Hetty looked online and found a hospital in London which specializes in unborn babies with Down’s Syndrome.
She said: “I was told at 30 weeks that the baby could come at any time, and I was told that I needed to move to London and needed to move there quick.”
The couple were told they had to be within walking distance of the hospital, and say they were forced to spend £15,000 on hotels that were close by because the care Hetty and Poppy needed was “not available” in Lincolnshire.
They eventually found an apartment across the road from St Thomas’ Hospital, where Harriett had to lay in bed for five weeks as a result of her polyhydramnios until Poppy was born.
Poppy was born via emergency C-section, and Harriett said that she had not been at a hospital with specialist care available, she does not believe her daughter would’ve survived.
Returning home to Grimsby after Poppy underwent two surgeries, the family had been told that St Thomas’ Hospital in London would now be sharing the responsibility of Poppy’s care with the Diana, Princess of Wales Hospital.
Hetty says the care Poppy has received at Grimsby Hospital has left her feeling neglected.
She said: “We asked Grimsby hospital if they could scan Poppy’s heart as she had an open duct which could’ve led to immediate heart failure. We were told that the consultant couldn’t see us.”
Hetty also claimed that Poppy was also given the wrong immunizations at Grimsby’s hospital.
“Any baby that’s had operations on their intestines or bowels should not have something called the rotavirus immunization. That causes sickness and diarrhoea. Poppy shouldn’t have had it, and Grimsby hospital administered it.
“Two days later, I was at Sheffield A&E with Poppy because she was bleeding from her behind. Everything we’d just gone through was potentially undone by Grimsby hospital, because then Sheffield were talking about a potential third surgery to correct her bowels again.
“For a mum who’s just got her baby out of the intensive care unit, it was incredibly frightening. I feel a huge amount of neglect and I feel harassed and bullied by Grimsby hospital. I’ve had letters through the post telling me that I haven’t engaged in their services because I’ve said to them that at the moment, as Poppy has a heart defect, the hip and ear tests they want to do aren’t important.
“She’s seen by the top cardiologist in London and yet Grimsby hospital feel that they have to put their ten pence in all the time. I’m getting letters telling me how to care for my child when I’ve been left to do this all by myself.”
Poppy is now waiting for open heart surgery.
Hetty said: “Poppy is a remarkable little girl.”
The hospitals’ responses
Melanie Sharp, Deputy Chief Nurse at Grimsby’s Diana, Princess of Wales Hospital said: “We are fully aware of these concerns and currently we are investigating as a formal complaint. We’ll respond directly to the family once the investigation has concluded.”
A spokesperson for the United Lincolnshire Hospitals NHS Trust said: “Unfortunately we are unable to comment on individual cases, however, we have been contacted by the patient’s family and have been liaising with them directly.”
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