The mother of a baby with Down's Syndrome has said she was advised by medics to terminate her pregnancy before the condition was confirmed - leaving her feeling suicidal. Hetty Blakey gave birth to baby Poppy on November 2, 2021, and said she felt let down by the hospitals that treated her daughter, Hull Live reports.
Hetty received care at hospitals including Lincoln County and Diana, Princess of Wales Hospital in Grimsby. The trust that runs the Lincolnshire hospital has said it is liaising with Poppy's family, while the Grimsby trust has confirmed it is investigating a formal complaint.
Hetty said Grimsby hospital had told her a heart consultant was unavailable to see her daughter, who was at risk of heart failure, while she felt she was "pressured" into terminating her pregnancy at Lincoln Hospital. She also said Poppy was given incorrect immunisations at eight weeks, leading to bleeding from her behind.
She had her 12-week scan at Lincoln, and 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."
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The couple then sought private healthcare at the Harley Street Hospital in London, and Hetty underwent CVS (chorionic villus sampling), which detects foetal abnormalities. This led to a diagnosis of Down's Syndrome.
Hetty said: "[The baby] looked perfectly healthy and they didn't feel there was a reason to medically terminate the baby at all. 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 organised, and just fall in love with the pregnancy again."
She said she would have ended the pregnancy following advice from Lincoln, had she not sought a second opinion. She said: "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, prepare 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 was not even called to see if I was OK. Poppy was nearly not here as a result of their advice."
The couple, previously of Lincoln, moved to Kirmington, near Grimsby, where their care was transferred to the Diana, Princess of Wales Hospital.
Hetty suffered with polyhydramnios - a rare condition in which there is an excessive amount of amniotic fluid - and her unborn baby was found to have a heart defect and duodenal atresia, a condition in which the stomach is not attached to the bowel. Hetty said: "At this point, we were classed as a very high-risk pregnancy and Grimsby could no longer deliver Poppy."
She said they were referred to Leeds Children's Hospital for Poppy's heart defect, and Sheffield Children's Hospital for Poppy's duodenal atresia, and were also sent to Scunthorpe General Hospital for foetal medicine. By this point Hetty was 30 weeks pregnant, and faced a choice between giving birth at Grimsby and being taken in an ambulance two-and-a-half hours away to Leeds, or moving elsewhere.
She said: "[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 found a hospital in London which specialises in unborn babies with Down's Syndrome, so the couple spent £15,000 on nearby hotels as the required care was "not available" in Lincolnshire. They then found an apartment across the road from St Thomas' Hospital, where Poppy was born via emergency C-section.
They returned to Grimsby after Poppy underwent two surgeries, and were told St Thomas' Hospital would now share responsibility for Popp's care with the Diana, Princess of Wales Hospital.
Hetty said she was left feeling neglected by the care Poppy received at Grimsby. 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. 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." She also said Poppy received incorrect immunisations at Grimsby, leading to a visit to Sheffield A&E.
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She said: "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."
Hetty said: "Poppy is a remarkable little girl." She is now awaiting open heart surgery.
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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