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A grieving mother has spoken of the constant trauma still haunting her 27 years after the death of her daughter.
Michelle was born at Hedon Road maternity hospital in May 1992, but passed away less than 12 weeks later at Hull Royal Infirmary.
Michelle’s mother, Janet, was excited for her new arrival – a second child for her growing family.
Aged 32 at the time, Janet attended all of her scans at the east Hull hospital, and says she was told to expect a perfectly healthy baby.
However, Michelle’s birth is a trauma that will follow Janet “to her grave”.
Michelle was born with such severe deformities, her mother says there is no way she would have survived to adulthood.
Doctors believed Michelle had congenital muscular dystrophy, and she died after ten weeks filled “with agony”.
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Janet says she would never have gone ahead with Michelle’s birth had she been told of her severe deformities – and now wants justice for her daughter.
“People might think 27 years is a long time, but I’m still traumatised to this very day”, said Janet, who lived in Patrington at the time of Michelle’s birth.
“It’s something I will never forget.
“I was in complete shock when Michelle was born, and I found myself running for the hills because I couldn’t handle it.
“Had we been told about her deformities in the scan then I would have terminated the pregnancy so Michelle could have been at peace, rather than live for more than 10 weeks in agony.”
‘I was told she would be fine’
Janet claims in her first scan the technician could not find a baby, and in her second scan at 18 weeks she was told the baby was fine.
“I couldn’t see her legs or one of her arms, and her other arm was stuck up in an awkward position”, said Janet.
“I asked the technician where her limbs were, and she just told me they were tucked up somewhere.
“I felt something was wrong, but you put your trust in these people. Looking back it amazes me how they identified the sex of the baby but not her disability.
Helplines and support groups
The NHS Choices website lists the following helplines and support networks for people to talk to.
- Samaritans (116 123) operates a 24-hour service available every day of the year. If you prefer to write down how you’re feeling, or if you’re worried about being overheard on the phone, you can email Samaritans at jo@samaritans.org.
- Childline (0800 1111) runs a helpline for children and young people in the UK. Calls are free and the number won’t show up on your phone bill.
- PAPYRUS (0800 068 41 41) is an organisation supporting teenagers and young adults who are feeling suicidal.
- Mind (0300 123 3393) is a charity based in England providing advice and support to empower anyone experiencing a mental health problem. They campaign to improve services, raise awareness and promote understanding.
- Students Against Depression is a website for students who are depressed, have a low mood or are having suicidal thoughts.
- Bullying UK is a website for both children and adults affected by bullying.
- Young Persons Advisory Service – Providing mental health and emotional wellbeing services for Liverpool’s children, young people and families. tel: 0151 707 1025 email: support@ypas.org.uk
“I would have aborted the baby because it wouldn’t have been fair on her and it wouldn’t have been fair on myself.
“This has affected me so much psychologically.”
Michelle’s death certificate cites respiratory failure and muscular dystrophy as her cause of death, but Janet believes her daughter’s true condition was never fully diagnosed.
In March 1993, Janet was given a blood test to identify if she carried a faulty gene that led to Michelle’s disability, and the results stated the blood was “entirely normal and gives no explanation for Michelle’s condition”.
In another letter sent from the paediatrician to Janet’s GP, it states: “Michelle was born at term after a normal pregnancy by a normal delivery.
“She was noted at birth to have multiple limb contractures compatible with foetal compression syndrome, or with something like arthrogryposis multiplex congenita.
“Full investigations were performed to try and confirm the diagnosis, but the key to the whole situation was found on a post-mortem muscle biopsy, which was highly suggestive of congenital muscular dystrophy.”
‘My baby is in her grave with no justice’
Janet was offered counselling after the death of her daughter, and eventually in 1999 began looking into why Michelle’s disability wasn’t picked up.
“All I could think was that it was someone who didn’t believe in abortions, or that she was a junior and should never have been allowed to give the go ahead for a healthy pregnancy”, said Janet.
“I finally realised what happened was a catastrophic blunder, and my baby is lying in her grave with no justice.
According to Muscular Dystrophy UK, congenital muscular dystrophy (CMD) is a term used for a group of genetic muscle-wasting conditions, in which the symptoms become apparent at an early age (congenital means from birth).
They cause muscles to weaken and waste over time, leading to increasing disability. They can also cause learning difficulties.
Of the 10,000 people in the UK who have a form of muscular dystrophy, it is thought that about 400 have CMD.
The two most common forms of the condition are Ullrich congenital muscular dystrophy, which affects about 50 per cent of people with CMD, and merosin-deficient congenital muscular dystrophy, which affects 25 per cent.
“I try and tell myself it was a blessing she died, because she would never have been able to live a proper life.
“She couldn’t move her arms or legs, and she couldn’t breathe on her own.
“But now someone needs to be brought to book.”
Janet began calling for an investigation into the way the scan was carried out.
In correspondence with Graham Stuart MP and the Hull and East Yorkshire Hospitals NHS Trust, Janet was told an investigation could not be carried out because of lack of records.
One letter from the hospital sent to Mr Stuart, MP for Beverley and Holderness, stated: “[Janet’s] medical and maternity notes from 1992 were located, however the scan imaging records were not available and, at this time, were not maintained on an electronic database.
“Unfortunately, with the available information it was not possible to address [Janet’s] concerns in a meaningful way due to the absence of any visual records of her examination(s).
(Image: Evening Gazette)
“In addition, staff members who were involved at the time no longer work in the organisation.”
Janet now wants other mothers who gave birth at Hedon Road hospital between 1990 and 1995 to come forward, if they too allege to have faced the same problems.
“The inscription on Michelle’s headstone says, ‘A rose too sweet to bloom’, because we gave her the middle name Rose,” said Janet.
“I still cannot cope with her death, and I need to bring some closure to what happened.”
Anyone wishing to get in contact with Janet about a similar experience can email hannah.robinson@reachplc.com or call 01482 315251.
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