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‘We are in need of support’

“Tairāwhiti needs a baby loss support group for bereaved whānau”, community members say. Families share their story with The Gisborne Herald’s Akula Sharma.

Gisborne mother Erin Julian was in Tauranga when she lost her son 32 weeks into her pregnancy in 2007.

She has since moved to Gisborne, but says the grief of losing her baby “still lives on in my heart”.

Ms Julian said she recently posted on social media groups asking about the need for a baby loss support group.

“I received many responses from the community — people sharing personal experiences and their needs. We all need whānau support . . . we feel isolated and need someone to talk to.”

Ms Julian said she was hoping to get people together to start a community support group for the region.

“We are looking at a coffee group in the park or something a bit more formal with a venue and monthly meetings. I think the really important thing at the moment is to reach out into the community and get their support.”

Twenty-two-year old Azaria Awa lost her first born when she was only 18.

“My partner Te Moa Panapa and I were so excited to become parents,” she said.

“My pregnancy went smoothly during the first few months with a few hiccups here and there, but nothing we couldn't handle. However, I suddenly went into premature labour at 26 weeks. From Gisborne Maternity I was transferred to Waikato Hospital in Hamilton and gave birth to my daughter at 27 weeks on July 23, 2018. Two months after her birth, she contracted a virus most commonly known as CMV (Cytomegalovirus) and only days later this virus took her life.

“I had only just turned 19 when she passed (15 days exactly after my birthday) and since losing her, my mental health has deteriorated rapidly.

“Before leaving Waikato Hospital, a social worker visited me and handed me a box filled with pamphlets and little packs from SANDS NZ to hopefully help me along the way. I never really looked into those pamphlets as it made it feel too real for me.

(SANDS NZ is the Stillbirth and Neonatal Death Society of New Zealand).

“Sometime down the track I decided to join the SANDS NZ/Baby Loss page and went on there every day to write about the pain I was feeling as nobody ever understood me.

“It did help, but things have become worse since then. I have also had to endure two miscarriages . . . my most recent one in August last year.

“I have always wished there was a support group in Gisborne to attend, as it's not always easy opening up to people who don't quite understand.”

Ms Awa said it was easier to talk to those who had been through a loss themselves.

“I have had to deal with my depression alone and when I saw Erin's post on a local Facebook page I just had to reach out. Not only for myself but for any other parent out there who may be feeling the exact same way that I am.”

SANDS NZ is a voluntary, non-profit organisation that provides compassionate support to bereaved whānau whose baby or babies have died, no matter their gestation or age, or how that baby or babies died. It is not a government funded organisation and does not have any paid staff.

The organisation's Gisborne contact is Shirley Rolfe. She has been the only support bereaved whānau have in this region for many years but more recently, due to personal circumstances, she has had to slow down.

“We rely mainly on hospitals and midwives to let us know if someone needs our services,” she said.

“There seems to be a lack of communication from the hospitals. I have always been there.”

Ms Julian said she and others in the community weren't aware of Shirley's services.

“The feedback I received from others like us so far suggests some midwives weren't passing on support information to whānau — not giving the pamphlets out or Shirley's details.

“Parents are leaving the hospital with no support. They are not being told they can go to their GP and get free counselling services, which is a huge concern.”

Hauora Tairāwhiti's director of midwifery Liz Lee Taylor said local GPs could refer people for counselling, “and do so where appropriate”.

“Te Waharoa also accepts self-referrals or referrals from a health professional for people in distress.

She said, “We do not have a local SANDS here in Gisborne, however women and whānau are offered information about the service including the national contact number.

“Lead Maternity Carers (LMCs) also offer support for women and their whānau in the event of a loss depending on their individual needs”.

When Gisborne mother Kim Johnston lost two of her sons, she said there was no support in place, nowhere to turn to and no one to ask what she should be doing.

She said she previously volunteered for Baby Loss New Zealand in Auckland and “would love for the service to come here”.

“I worked closely with Sarah who is the general manager of Baby Loss in Auckland and I am talking to her about starting up a group here.

“We need support from the community to bring this service to our region and to make this a reality for so many families that need this.

“All our children matter.Some we carry in our arms and some we carry in our hearts forever.”

Gisborne mother Eloise Wallace said she lost her baby two years ago, which was a “really traumatic experience”.

“I contacted Erin after she posted on Facebook about the need for a community support group for baby loss. I think it is a really good idea.

“I lost my baby boy two years ago and it was a really traumatic and isolating experience. Communicating with other mums online was a lifeline for me but having a face to face group for peer support locally might have helped me cope better with the loss of my baby.

“I believe it could have lessened the severity of the impact on my mental health, which worsened over time, particularly as his due date came and went.

“I want to support the initiative because I don't want other families who are going through the loss of a baby to feel as isolated and unsupported as I did.

“When I gave birth at the hospital, staff were kind and professional but they didn't have any specialised support or information to give me to help me create some positive memories during those few precious hours with my baby, to work through what had to be done, or where to go to get help. Once I left the hospital, I felt completely alone.

“The only support I had was communicating with other mothers online. People shared their experiences, answered questions and helped each other wherever they were in their baby loss journey. I felt able to share what I was going through in a way I couldn't with my own family and friends because we had that shared experience.

“Participating in these groups it became clear a lot of people aren't aware of their rights and services available to them after they've lost a baby and a support group would also be a place where they could get that information.”

Gisborne mother Rosalyn Bennett said a baby loss support group in Tairāwhiti was a “must”.

“It's about knowing you have somewhere to go when you are experiencing grief and you need someone to talk to.

“It needs to include everybody in the wider whānau. We need qualified counsellors who have dealt with child loss.

“Education is also important..I had no idea what cot death was until it happened to our whānau.

“I am excited about the upcoming programme called Nati Pēpi in association with Ngāti Porou Hauora which will promote safe sleep and provide other services to help mum and dads.”

Ms Julian said she hoped the wider community and local government, especially Mayor Rehette Stoltz, would listen to their concerns and “help us start a group which we all need”.

Gisborne Mayor Rehette Stoltz said many families would be helped if a support group was restarted in Tairāwhiti to provide “care and a safe space after the loss of a baby”.

“There is a great need for after care in our community for anyone who has experienced such a loss. We know this is an incredibly difficult issue for many whānau in our region.

“To have a wraparound support service for families affected will be invaluable. This will make a difference, and I would like to extend my thanks to the organisers who want to re-establish this group.”

Annual Perinatal and Maternal Mortality Review (PMMR) reports over a number of years by the Health Quality and Safety Commission have recommended to the Ministry of Health the need for a “bereavement pathway” for whānau who have lost a baby.

The most recent news from the Ministry is that work is progressing on a bereavement pathway, “to better support whānau experiencing the loss of a baby”. A Ministry spokesperson said the next step would be a bereavement survey.

PMMR committee chair John Tait said care in Aotearoa was variable, was based on a person's location and often relied on “volunteer services providing necessary resources and support”.

“Before work on the bereavement pathway commences, the Ministry of Health is contracting for a group to conduct a bereavement survey. While background work has commenced, work on the pathway itself has not.”

SANDS New Zealand's chairperson Melanie Tarrant said they had a network of groups throughout Aotearoa providing “this valuable mahi” and had been serving the community with this support for more than 35 years.

“The recent announcement by the Ministry of Health to begin mahi on the National Perinatal Bereavement Pathway for those whose baby dies will address the inequities in bereavement care across the motu.”

Tairāwhiti deathcare advocate and end of life doula Annie Meredith said there was an “absolute need” for a baby loss support group for our region.

“I have people ask me about what resources are available especially when people want to bring a baby home after death and how this can be managed, a support group would be a place to have information and resources.

“A support group that meets regularly with information to pass on would be incredibly helpful at a very difficult time.”

EIT Tairāwhiti professor for Māori health Dr David Tipene-Leach has worked for sudden unexpected deaths in infancy (SUDI) prevention.

He said the loss of a precious infant was probably the biggest loss a whānau could experience, especially for “the mother who has carried the pregnancy, fed the baby six times a day, coo-ed or rocked the baby to sleep as the busy life of others continues around them”.

“And yet when disaster strikes, we take away the body, do a post mortem, don't talk about it, avoid the issue and generally look around for someone or something to blame.,” Dr Tipene-Leach said.

“No wonder parents become depressed, and many separate over the stress.

“We are not good in Aotearoa New Zealand at dealing with grief. And when it comes to babies we are not much better at it in the Māori community.

“A gentle word, a held hand, a lasting connection and if you are lucky – a professional intervention, are required more at this time than any other. Kia kaha tātau whānau mā, ki te manaaki i ēnei wāhine, ēnei mātua o te pēpi mate whawhatitata nei.”

National Baby Loss Awareness Week was from October 9 to October 15.

Azaria Awa and her partner, Te Moa Panapa. Picture Supplied.
Precious moments: Azaria Awa and her partner Te Moa Panapa with their first child Te Puna Whakaaio Panapa-Awa who passed away soon after her birth. Picture supplied
Erin Julian, gisborne mother who Hopes to gain community support to form a whanau based Baby Loss Support group In Tairāwhiti, and Sands Gisborne Support worker Shirley Rolfe. Picture By Rebecca Grunwell.