My newborn died after 40 minutes but I was left alone to handle grief... that is just not right
A woman whose baby daughter died 40 minutes after birth when she developed a fatal foetal abnormality has demanded better services for bereaved parents in Northern Ireland.
Leanne Campbell from Bangor said she was left devastated when she was told her baby had Edwards syndrome just hours before she gave birth.
Edwards syndrome – also known as Trisomy 18 – is a genetic condition and affects around one in 3,000-5,000 births.
It affects the baby's development, and almost three-quarters of babies diagnosed with it are miscarried or stillborn. Leanne, a mother-of-five, had been concerned her baby had been small in developing in the womb.
"I had small babies before but was being monitored in the Ulster Hospital and was told that everything was OK."
But she was then referred to the Royal Victoria Hospital for tests when she was around 23 weeks' pregnant.
Leanne was told to go to the hospital on Monday, December 30 for the results.
"I wasn't prepared to hear what I was told," she said.
"I was told she had Edwards syndrome.
"I didn't know what it was. I asked: 'Will she be severely handicapped, paralysed?'
"He said: 'Yes, she has spina bifida, brain damage, she is paralysed and Edwards syndrome is incompatible for life. Leanne, your baby is going to die'.
"I couldn't take in what he was saying; she was going to die either during or shortly after she was born."
The 33-year-old said she then went into labour at the hospital.
"I worried but the doctor told me 'you can't wait'.
She was 33 weeks' pregnant.
Kacie was born at 12.05pm on December 30 and died at 12.45pm, weighing just 1lb 10oz.
Leanne added: "I had her within two hours. I was sitting at home three hours later with a memory box.
"I had to come home without the bump, without the baby, and explain to my other children what happened.
"I just feel I was left to cope. I got no real information afterwards.
"I asked my doctor to make an appointment for me to see someone – I know there are people out there to help. But it was going to take a while and then I just didn't feel like talking about it. Everyone grieves differently."
She was so concerned about services for bereaved parents that she approached her MLA Alex Easton to write on her behalf to the Health Minister Edwin Poots.
In a response, Mr Poots wrote it was "fully understandable" that she should wish that other women were able to access a high standard of bereavement care.
"I recognise that appropriately managed and compassionate end-of-life and bereavement care is a vital part of palliative care for children and their families," he said.
Mr Poots said it was a priority and the department was "currently reviewing a care plan for women who experience a miscarriage, stillbirth or neonatal death".
However, she said she had been in touch online with other women and couples in Northern who have had babies with Edwards syndrome.
"There are other people who have had babies with Edwards syndrome and are raising awareness – it is so important.
"I felt I needed to talk for Kacie, raise awareness about it for her, and then try and move on."
She added: "I feel care could be better.
"I'm sure there are other women and couples just struggling to cope."