A caring service for those who lose a baby

Left: Diane Magee with Christopher, who was diagnosed with a fatal fetal abnormality at 32 weeks and lived for only an hour. Right: Diane with baby Andie Moya, who also passed away.

Saturday marks the completion of a two-year rollout of national standards to ensure that parents who lose a baby are cared for with compassion, writes Catherine Shanahan.

ANNA Maria Verling, bereavement clinical midwife specialist in Cork University Maternity Hospital (CUMH), says there was a time, many moons ago, when babies who died during or after childbirth “were taken away from parents and buried in the darkness”.

“Women went home and were told to get on with it,” she says.

Losing a baby was slightly shameful, an inconvenient tragedy, not up for discussion, and not a public health issue.

Thankfully, things have moved on substantially, with added impetus in the last few years, albeit on the back of a series of high-profile major failures within our maternity services.

The death in 2012 at Galway University Hospital of Indian dentist Savita Halappanavar, due to the complications of a septic miscarriage at 17 weeks gestation, and the deaths of babies at Portlaoise Hospital, over a number of years, five due to lack of oxygen, were key drivers of change. We now have:

a) National Standards for Safer, Better Maternity Services;

b) National Standards for Bereavement Care Following Pregnancy Loss and Perinatal Death.

The latter, published two years ago, provide the template for maternity units to develop a compassionate, caring service for parents who lose a baby due to miscarriage, stillbirth, and neonatal death.

On Saturday, midwives, doctors, parents and others involved in developing and driving those standards will gather at University College Cork for a Bereavement Forum, marking the completion of a two-year implementation programme.

Rachel Rice, who experienced three miscarriages between 2010 and 2011, will chair the first session. She and a number of other parents who went through the pregnancy loss service at CUMH were invited by the implementation team to become members of a parent forum that had substantial input into what care pathways should look like for parents dealing with similar devastation.

“Often we can’t do anything to prevent a pregnancy loss such as miscarriage or fatal fetal abnormality, but what we can influence is the response, care and support that parents receive from the time of diagnosis, through to delivery and aftercare,” Rachel says.

Those leading the national implementation programme include Keelin O’Donoghue, consultant obstetrician and gynaecologist at CUMH, and specialist in high risk pregnancies, and programme manager Rióna Cotter.

Keelin O’Donoghue, consultant obstetrician and gynaecologist at CUMH, is one of those leading the national implementation programme.
Keelin O’Donoghue, consultant obstetrician and gynaecologist at CUMH, is one of those leading the national implementation programme.

They wanted to ensure the development of care pathways were informed not only by experts and clinicians, but by parents who had lived experience of pregnancy loss and bereavement care.

“As a group, we represented the full range of pregnancy loss — miscarriage, stillbirth, fatal fetal abnormalities, early and late neonatal death,” Rachel says.

“There were mothers and fathers in the group and we met a number of times at CUMH where the implementation team brought us up to speed on the work they were doing and asked for our views. They sent us draft care pathways for review and asked for our feedback.

“There was great openness to hear what we had to say, what was important for us, what worked well and what perhaps needed to be improved upon.

“I hope that our input helped those developing care pathways to think carefully about what was needed and perhaps question practices that may have been in place that need to be improved upon,” Rachel says.

Diane Magee, from Tower, Co Cork, had an heartbreaking level of contact with bereavement care services at CUMH.

In 2015, her son Christopher was diagnosed with a fatal fetal abnormality 32 weeks into the pregnancy.

“I was not feeling any movements so I went to CUMH. The heartbeat was not good. The doctor told me my baby’s head was only measuring at about 25 weeks,” Diane says.

In the event, Christopher had to be delivered.

“My husband David had to tell me when I came around from the anaesthetic that our baby was very sick and he wasn’t sure how long he was going to live,” Diane says.

Christopher, “a fully formed baby”, lived for just over an hour.

More heartbreak followed. In a subsequent pregnancy, Diane suffered a miscarriage.

Then, in April 2017, she was delighted to discover she was pregnant again.

Tragically, this pregnancy also ended in devastation.

Her baby’s heartbeat could not be detected during a visit to her GP at 16 weeks.

Diane was dispatched to the emergency department at CUMH where consultant obstetrician and gynaecologist Moya McMenamin found a heartbeat but also discovered the baby’s head was measuring at 14 weeks.

A period of monitoring the baby’s development followed as Diane readied herself for an anomaly scan at 24 weeks, the day before her brother’s wedding. Her husband was in Dublin on the day of the scan so she attended with her mother, who was “all excited” at the prospect of becoming a grandmother again (Diane has a daughter Masy).

There was no cause for celebration.

“The first time around David had to tell me our baby was not going to live. This time I had to ring him and say ‘I am very sorry. Our little baby is gone to heaven’.”

Diane, her husband, mother and father kept the news to themselves as the wedding went ahead. She subsequently returned to CUMH where five days later, on September 12, 2017, a baby girl, Andie Moya was delivered.

Diane chose the name because they had been unsure of the baby’s sex up to the point of birth, and Moya was inspired by the consultant she describes as “a complete lady, who went above and beyond what she needed to do, and who was with us for Christopher, the miscarriage and Andie Moya”.

Diane Magee with baby Freddy, who is now six months old, and Nilema, who has been with Diane for all four of her babies.
Diane Magee with baby Freddy, who is now six months old, and Nilema, who has been with Diane for all four of her babies.

Dr McMenamin was also present when Diane gave birth to her beautiful son Freddy, now six months old.

It is of some consolation to Diane that she gave birth naturally to Andie Moya. She is also thankful for the treatment she received at CUMH.

“They organised the coffin each time, they organised the priests. The priest that came in for Andie Moya renewed our marriage vows for us, as we were six years married.

“Renewing our vows was to make Andie Moya’s birthday and anniversary more special.

“The hospital did so many special things. A midwife brought a custard slice. Another midwife nurse went to the coffee dock and brought me coffee and just sat with me and talked normally, while holding Andie Moya.”

Photographs were organised. Féileacán, the Stillborn and Neonatal Death Association of Ireland, organised a memory box, which included a hand knitted baby blanket, teddies, a keepsake box for identification bracelet.

Diane appreciated each and every gesture, including the sensitive manner in which bad news was communicated to her and how generous doctors and midwives were with their time.

These positive elements of her experience are reflected in what’s expected under the new bereavement care standards.

Moya McMenamin, consultant obstetrician and gynaecologist, and bereavement midwife Orla O’Connell with baby Freddy.
Moya McMenamin, consultant obstetrician and gynaecologist, and bereavement midwife Orla O’Connell with baby Freddy.

The standards are very strong on the need for good communications, with an emphasis on “timely, clear and sensitive communication with the baby’s parents and their families on all matters relating to dying, death and bereavement care”.

At time of diagnosis, all relevant hospital staff are expected to “sensitively communicate bad news to parents in a quiet and private environment and with special consideration of individual needs and preparedness for the emotional and physical management of their diagnosis”.

In preparation for birth, parents are “sensitively advised verbally and in writing of what to expect before, during and immediately after birth and are invited to meet with a member of the bereavement support team”.

A care pathway that takes into consideration the cultural, religious and secular preferences of the parents is designed with the parents.

Rachel and Anna Maria say there was a time when pregnancy loss was not naturally part of the pregnancy story.

“People who have never experienced pregnancy loss don’t go to the possibility of loss in their heads when they see a positive pregnancy test,” Rachel says.

“They go straight to positive outcomes, having a healthy baby in their arms, and how that will play itself out in their lives going forward.

“Therefore, when it happens, it’s shocking, devastating and parents are parachuted into a world that is very unknown to them.

“As a result, parents are utterly dependent on health care providers and maternity services to help and guide and support them when they receive bad news.”

That’s why it’s so essential that bereavement care becomes an integral part of our maternity services, Rachel says, and it needs to be available in all 19 maternity units.

Rachel, from Midleton, Co Cork, did have a “high risk success” in the wake of her recurrent miscarriages, when she gave birth to James, who is now six. She also has two daughters, Grace (12) and Evie (9).

There have been tangible improvements in services in the past few years.

Anna Maria says she was one of just two midwife bereavement care specialists at the time she was appointed to the role 13 years ago.

The post was created in the wake of the amalgamation of three maternity hospitals into one, CUMH, and “there was quite a bit of insight in planning for the new hospital”, Anna Maria says.

Her role has evolved over the years and the number of posts has grown.

“Only six hospitals had people in posts when the standards were launched in 2016. By the end of March this year, all of the 19 units will have a bereavement clinical midwife specialist.”

A national website — pregnancyandinfantloss.ie — is also expected to go live at the end of March.

Anna Maria says she sees herself as “the voice of parents” within the hospital, rather than the voice of her employer and “that’s something new”.

Rachel says the vision of the standards is that “no matter what maternity hospital or services women engage with, they should be able to expect the best standards of care both for themselves and for their babies”.

“The standards provide a framework to ensure this happens and the implementation process over the last two years has been integral to this being realised in practice,” she says.

All that’s required now is for training and education of relevant staff to be prioritised and resources made available.

“We need commitments and resources from those at senior levels of the health service to continue the work and progress made during the two-year implementation process, so a comprehensive service can be available to women.

“As parents, we all remember the devastation of our losses, but we also all remember the quality of care we received at the time,” Rachel says.

“When parents lose a baby, their instinct to care for their baby does not diminish. In many respects it is heightened — it’s often their only chance to ‘parent’ their baby.

“It’s really important to them how their baby is cared for as they die, or if they have already died.

“So it matters — really matters, how this is managed within our maternity services.”

Perinatal deaths

  • Stillbirth: A child born weighing 500g or more or having a gestational age of 24 weeks or more who shows no sign of life.
  • Early neonatal death: Death of a live born baby occurring within 7 completed days of birth.
  • Late neonatal death: Death of a live born baby occurring after the 7th day and within 28 completed days of birth.

Baby deaths in the Republic of Ireland in 2016

  • 407 perinatal deaths during pregnancy or shortly after birth among 64,133 births;
  • Stillbirths, early neonatal and late neonatal deaths accounted for 250 (61.4%), 124 (30.5%) and 33 (8.1%) of the 407 deaths, respectively;
  • The perinatal mortality rate was 1 in 172 births;
  • One in five pregnancies ends in miscarriage.

* Figures from the National Perinatal Epidemiology Centre

- The National Bereavement Forum takes place Saturday, in Devere Hall, UCC, from 10am-5pm.

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