The deafening sound of a stillborn silence

Sensitive treatment after pregnancy loss can have a positive impact on the grief of bereaved parents

 

The most deafening sound in a delivery room following the birth of a stillborn baby is the heartbreaking silence.

Although not every newborn cries, we are conditioned to listen for that first, lusty cry as soon as a baby enters the world.

For the parents – who may or may not have been prepared for the fact that their baby was going to die – the loss of their hopes and dreams for the future, and the feelings of grief and isolation, can seem overwhelming.

For the staff, stillbirth has been identified as one of the most difficult experiences for most obstetrical teams, highlighting the professional challenges of dealing with death in the midst of life.

Amid the many joyful couples who leave the labour ward with a healthy baby are those who leave with empty arms and empty hearts.

Stillbirth is more common than many people think, occurring in one in every 200 births, and is 10 times more common than infant cot death. In Ireland, 273 stillbirths were registered in 2010.

A stillborn baby is a baby who is born dead after 24 weeks of pregnancy. If a baby dies before 24 weeks and weighs less than 500 grammes, their death is considered a late miscarriage.

There are many reasons babies die either before or shortly after birth.

The baby may not be capable of life outside the womb; there may be a congenital abnormality causing death before or after delivery; or there may be other complications such as eclampsia or lack of oxygen.

In many stillbirths, the direct cause of the baby’s death cannot be established, although it is possible to identify conditions associated with the death through a postmortem examination or autopsy.


Significant bereavement
The recognition of perinatal loss as a significant bereavement is relatively new but the death of an infant is now recognised as one of the most stressful life events that an adult may experience.

Research has shown that skilled, sensitive and caring treatment in the time surrounding pregnancy loss impacts positively on the grief experience of bereaved parents.

Consultant obstetrician Dr Keelin O’Donoghue runs the pregnancy loss services at Cork University Maternity Hospital (CUMH) where the focus is on addressing the medical, emotional and spiritual needs of bereaved families in a dedicated specialist setting.

“Stillbirth can have a profound effect on women and their partners, into the next pregnancy and beyond, causing health problems and even affecting relationships.

“It is important to remember that the stillbirth has happened as this is not an issue that goes away for those involved, even if it was many years ago and they have had other children since.

“It is important too that hospital staff are reminded that not all births are happy ones,” says O’Donoghue.


Ecumenical service
Every year, for the past five years,

O’Donoghue and her team have held an ecumenical service of remembrance for parents and families who have experienced pregnancy or infant loss.

For some, it is an occasion to mark a recent loss while, for others, it may have happened a long time ago when pregnancy loss was not acknowledged.

One couple in their 70s who attended last year’s service had lost their daughter 32 years previously, but this was their first chance to remember their baby publicly.

The most common form of pregnancy loss, explains O’Donoghue, is where a mother reports that the baby is not moving and a scan shows that the baby has died in the womb.

In cases of major congenital malformation, the baby may be born alive and die shortly after birth, or may be stillborn. One of the most traumatic situations, she says, is where, after a normal pregnancy, something goes wrong in labour and the baby is stillborn.

“It is so important that staff are sensitive and experienced in dealing with pregnancies where the baby has died or is going to die.

“We do try to separate patients who experience pregnancy loss from the usual group of patients full of happy expectation,” she says. “It’s very challenging work and the team usually stays involved with the mother for a while after the birth and into any subsequent pregnancies which, understandably, can be attended by a huge amount of anxiety.”

Parents are encouraged and helped to retain precious memories of their babies such as hand and footprints, locks of hair and photographs.

A Little Lifetime Foundation (isands.ie) provides hospitals with a special pack containing information and suggestions for families, including a guide to taking photographs and a folder to help create memories. Féileacáin, the Stillbirth and Neonatal Death Association of Ireland, also provides memory boxes and support to parents.


Inaugural conference
Last year, leading national and international clinicians and researchers came together at the inaugural Impact of Stillbirth conference in Cork, which was organised by O’Donoghue’s team and the department of obstetrics and gynaecology at University College Cork.

A DVD entitled Why did my baby die?, which helps bereaved parents consider the sensitive issue of postmortem examination or autopsy to determine the cause of their baby’s death, was launched during the conference.

“Nobody expects it to happen to them but, despite huge advances in obstetric care, there has not been a huge amount of change in the rate of stillbirths in Ireland and the UK.

“For some of these births there is a definite cause, for some there is a suspected cause but, unfortunately, there are some that remain unexplained and we do need to put more effort into investigating stillbirth internationally,” says O’Donoghue.



Robbie’s story: ‘He died with me, under my heart’


Even though Marion Gabriel knew her baby had died in the womb at 38 weeks, she found she was still waiting for him to open his eyes and to cry when he was born on July 22nd, 2010.

Towards the end of a relatively normal pregnancy, a scan showed that the baby was small and she was told she needed extra monitoring.

At 36 weeks, she was told the baby had gastroschisis, a congenital defect in which the abdominal contents protrude through the abdominal wall.

“I was told that Robbie would need an emergency operation straight after birth and the only place this could take place was in Our Lady’s Children’s Hospital in Crumlin, so I would have to give birth in Dublin.

“It was arranged that I would go up at 37 weeks to be induced but four days before my induction date, I went to Cork University Maternity Hospital for a scan because I felt no movement.

“I knew he was gone and the scan confirmed it. It was horrific, unspeakable, the worst possible thing that could happen.”


First reaction
After being told her baby had died, Marion’s first reaction was that she wanted the baby to be delivered straight away.

However, she met the bereavement team who advised her that she needed to go home and come to terms with the news.

She was given a tablet to start labour and told to come back two days later to be induced.

She and her husband, Mark Hurley, went home to Kinsale, Co Cork, and she went into labour that night.

“I was terrified of hearing other babies crying but they put me in a room away from the other rooms in the delivery ward where I couldn’t hear anything.

“It all happened so fast and, at that stage, I couldn’t wait to see and hold my baby.

“I was so proud of him; he had black hair like me. The fact that he had died did not come into it for me. I was in a state of shock.”


Kept baby close
Marion kept the baby in the room with her in hospital that night and they took him home the next morning and kept him there overnight.

Being the daughter of an undertaker, she knew they had the option to bring the baby home.

“Years ago, you couldn’t even see your baby if they died; they were taken away. Those couple of days we had with Robbie, those are my memories.

“We took photos of him and dressed him, he looked perfect. I didn’t cry until after the funeral; I didn’t want to waste the time we had with him.

“I survived on cups of tea but after the burial, I fell apart.

“The physical pain of having had a natural birth that happened so fast hit me and my milk started coming in. For that first year after the birth, I was in a trance.

“The only consolation I have is a tiny one; that he died with me, he died under my heart and was not in any pain.”

Six weeks after losing Robbie, Marion found out she was pregnant again and his little brother, Joey, was born on June 10th, 2011.

She and Mark remained very involved with the bereavement team and got counselling in the hospital all through the pregnancy.

“I held my breath for nine months and was terrified going down to the delivery ward. I was told Joey might not cry straight away and not to panic.

“Joey is two and a half now and I talk about Robbie constantly to him and bring him to visit the grave. We still have bad days; it’s not easy.

“Having a second baby we love dearly does not make it easier whatsoever,” she says.

‘A massive hole’
“Both myself and Mark will always have a pain, a massive hole where Robbie was. He was our first son and nothing can take that away from him.

“The pain will never go, but, hopefully, in time, we will learn to live with it.”


Pregnancy loss services in Ireland


There
is a range of services available in Ireland for parents and families who are going through or have experienced the trauma of pregnancy loss, or have lost a baby shortly after birth.

At the major maternity hospitals, staff are available to provide support and reassurance, from organising photographs and mementos of the baby to arranging funeral services or referring parents to bereavement services.

Many of the units, including the National Maternity Hospital at Holles Street, the Coombe Women & Infants University Hospital and Cork University Hospital, offer a pregnancy-loss service staffed by specialised bereavement nurses, hospital chaplains and social workers as well as medical staff. Many hospitals hold an annual service of remembrance for bereaved parents and relatives.

Outside the hospital, a GP will refer parents to specialist counselling if they are finding it difficult to cope.

Mothers of stillborn babies born after 24 weeks of pregnancy are entitled to 26 weeks’ maternity leave and to maternity benefit from the Department of Social Protection.

Parents can now register a stillbirth and apply for a stillbirth certificate for their baby.

There are also a number of excellent support groups working in this area:


A Little Lifetime Foundation (formerly Isands)
is a charity that has been providing information and support to bereaved parents and families since 1983.

It distributes a booklet, A Little Lifetime, to every maternity unit in the State. The booklet has helpful and important information for parents when they are given the sad news that their baby has died or is expected to die. See isands.ie

The Miscarriage Association of Ireland (MAI) provides support and advice to couples following a miscarriage. It holds support groups, distributes a newsletter and provides a telephone helpline at 01- 8735702. See miscarriage.ie

Féileacáin (Stillbirth and Neonatal Death Association of Ireland) is a newly formed, not-for-profit organisation that aims to offer support to anyone affected by the death of a baby during pregnancy or shortly after. The organisation was formed by a group of bereaved parents who supported eachother after the death of their own babies and have now come together to offer support formally to other parents and families who find themselves in a similar situation. See feileacain.ie

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