“Even the smallest of feet have the power to leave everlasting footprints upon this world”. #stillbirth #miscarriage #hongkong
Every month or so a group of parents meet for coffee on the fourth floor of Central Health Medical Practice in Duddell Street. They talk through their experiences, their feelings, their lives, and about their babies. Sadly, however, those babies no longer have a place in this world. These parents have all suffered the loss of a child through miscarriage, stillbirth or neonatal death and come together to offer each other support.
Dr Lucy Lord started the precursor of this English-speaking support group 25 years ago. Lucy is a veteran obstetrician known for her straight talking and support for vaginal delivery. In a city where the Caesarean section rate in private practice is close to 70 per cent, one of the highest section rates in the world, she has managed to stay true to her roots in the NHS.
Lucy is clear it is the responsibility of the obstetrician to fully support their patients through the good times and the bad. It is undoubtedly of greater difficulty but greater value to support them through tragedy. Whilst it is the hope of every obstetrician not to lose a single baby, in reality we know miscarriages are common and more tragically about one in one-hundred babies die between 24 weeks and one year of age. Not to make proper provision to support the patients who need it the most is unacceptable.
In the early years of the support group Lucy and her midwives did most of the counselling; patients were mainly referred through word of mouth and the service was provided pro bono. The group grew in numbers and about seven years ago Suzanne Meenan, a psychologist at Central Health, took over supporting a much larger group, which, by that stage, also consisted of some English speaking Hong Kong Chinese bereaved parents.
When Suzanne Meenan returned to Ireland six months ago, Lucy once again met with the group to determine what kind of psychologist and support was needed going forward. It was at this time that Lucy met Teresa Lee, Sharon Ma and Henry Siu, three Hong Kong Chinese parents who had suffered the loss of a baby.
Lucy was surprised to hear how they, and many other patients at local hospitals, were treated at such a devastating time and how little support and information is available to the grieving parents.
Sharon Ma and Teresa Lee both experienced stillbirth due to preeclampsia in 2016 and 2017. They consider themselves lucky to have found the support group at Central Health as no such group existed for the non-English speaking community.
Because of this lack, Sharon and Teresa (who both speak English and Cantonese) started two support groups for Cantonese-speaking mothers. They have been amazed by the amount of people wanting to join the groups, which are called
“Stillbirth媽 媽一起走 ”(Stillbirth Mothers Walk Together)
“小產媽媽一起走” (Miscarried Mothers Walk Together).
In addition to forming the support groups, the two began lobbying the government and making press statements with the hope of improving the way mothers who experience the loss of their babies are treated in Hong Kong.
“A baby born in silence is also a human, my baby deserves the right to be respected by others,”
The thought of a miscarriage or a stillborn child is enough to bring any of us to tears. Those who have not been through either experience can only imagine how shattering it is to have elation about your growing baby turn to grief.
Now imagine going through a stillbirth with a complete lack of information about the process, or the options available to you; your husband not being with you while you go through the delivery; the nurses and medical staff not being trained to handle the physical and emotional needs of stillbirth parents and there being no guidelines for the medical staff about the subject.
Sharon and Teresa explain how in Hong Kong there are no cuddle cots available (this applies to both public and private hospitals). There are no special fridges for stillborn babies; they are put inside the same fridge as a deceased adult – using the same temperature, but due to the tiny size of stillborn babies, this results in the baby shrinking and freezing.
There is no memorial box, no footprint, no picture, no size measurements are given to stillbirth parents and the baby has no proper clothes at all.
Stillbirth parents cannot get a birth certificate for their baby.
An incinerator for a baby is not available.
The hospital allows no time for parents to grieve or create special memories of their lost baby; in fact, the parents are rushed into making decisions.
Mothers cannot take maternity leave if they lose their babies before the 28th week of their pregnancy and no leave is granted in Hong Kong for grieving.
For parents who lose their baby before week 24 the situation is even worse. No-midwife or doctor is provided to assist with the delivery process. The mother is not eligible to go to the delivery suite to deliver her baby, instead she is put into a gynaecological ward without a trained midwife and the parents receive no briefing on the induced labour process.
Shockingly, a baby under the 24th week of pregnancy is considered “clinical waste”. Parents of a baby that dies during the 24th week of pregnancy cannot legally take the remains out of the hospital for cremation or burial.
To put this into perspective, in the UK the cornerstone of bereavement care lies in the understanding that the care given around the time of a miscarriage or stillbirth can set the stage for the family’s entire grieving process.
Women are able to have a partner, relative or friend with them at all times. Many units have double bereavement rooms or, at the very least, a single room with a comfortable chair and nearby facilities for men’s use.
Parents have the opportunity to create memories of their baby; take photos, wash and dress the baby, take hand and foot prints, and spend time with the baby, even taking him or her home should they wish without worrying about the baby deteriorating in condition due to the availability of cooling
There is a dedicated mortuary fridge near the ward, meaning parents never have to go to the mortuary to see their baby, and the baby remains close should parents want more time with the baby.
And in the UK, if the baby is over 24 weeks gestation it is classed as a stillbirth, given a medical certificate so that it is registered as such and the parents are given the choice to make their own funeral arrangements, or to let the hospital arrange either a burial or cremation as required by law. Although the pregnancy will not be considered technically a stillbirth, nor is there a legal requirement for burial or cremation, the ethos is no different when under 24 weeks.
In April of this year the Hon Jeremy Tam questioned the Food and Environmental Hygiene Department, who oversee cremation and burials, about the matter. His questions and the responses from the secretary if the FEHD can be found on: www.info.gov.hk/gia/general/201804/11/P2018041100538.htm
In Carrie Lam’s 2018 Policy Address she also addresses the matter.
“We fully understand the worries and anxieties of parents who may encounter difficulties in arranging proper burial or cremation of their abortuses. In this connection, the Food and Environmental Hygiene Department and the HA have already implemented various administrative measures to facilitate the handling of abortuses. The Government is examining proposals to further improve such arrangements in a holistic manner, including provision of facilities.”
Teresa and Sharon recently met with the government and found the meeting to be positive. A solution has been proposed which changes the description
to something more dignified and research has begun on importing baby cremators from overseas. Other suggestions have been put forward, but Teresa feels that there is still a lack of understanding regarding the front line medical staff and their handling of the matter.
Since meeting Sharon and Tracey, Lucy has committed herself and her staff to helping them improve the way the public hospitals treat mothers, and to help provide parents with literature and information.
Lucy recently set up a mental health charity, Mind HK and has offered this as a platform to support the cause, with the charity agreeing to host a perinatal psychiatry section on their website.
Lucy has also managed to secure support from the Royal College of Gynaecologists in the UK (RCOG), the Stillbirth and Neonatal Death (SANDS) charity in the UK and is in the process of asking for support from the Hong Kong College of Obstetricians and Gynaecologists. SANDS have agreed to provide all their written resources, allowing the content to be localised and translated into Chinese. Subject to confirmation and funding by Hong Kong, RCOG have also agreed for Mind HK to localise and translate their information on best practice in perinatal loss and perinatal psychiatry into Chinese.
The information from SANDS and RCOG will be available on the perinatal psychiatry section of the MIND HK website. Lucy and the team working on Mind HK also hope to include other information on postnatal depression and perinatal anxiety, making it a one-stop resource for maternal mental health.
Planning is also underway for a conference led by the patient support group to highlight how best to support mothers and their families suffering late pregnancy loss, recurrent miscarriage, stillbirth and neonatal loss. The conference will be inclusive, inviting parents, obstetricians, psychiatrists, family doctors, paediatricians, midwives, nurses, social workers, psychologists hospital administrators and the department of health. The conference will have Professor Lesley Regan, the 30th President of the Royal College of Obstetricians and Gynaecologists, only the second woman to ever hold this role, and Head of Obstetrics and Gynaecology at St Mary’s Hospital campus, Imperial College London, as a key note speaker.
Teresa hopes that through this combined effort the system and support system will improve. She hopes to increase awareness to all party leaders and influencers, such as the government, medical staff and media. And in Sharon’s words,
“A baby with wings is also a life, and I am also a mum even if my hands are empty and I simply embrace my baby with my heart.”
This article appeared in Playtimes Winter Issue 2018/19.