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Baby Loss Awareness Week – 9-15 October 2016

This week is Baby Loss Awareness week and the Multiple Births Foundation is happy to join with 24 other charities to support Sands in rising awareness of this important issue.

Every day 17 babies are stillborn or die shortly after birth in the UK. Sadly this figure is higher for families experiencing a multiple birth due to a greater risk of complications. On average twins are 5 times more likely to die in their first year of life and triplets are 8 times more likely.

As one mother we worked with said "it can be incredibly hard to grieve for a baby whilst caring for the surviving twin" Grieving is complicated for these parents if they are caring for the other baby(ies) who may also be premature with concerns about whether they will survive. They often find it very difficult to allow themselves to grieve fully, potentially leading to more problems in the future.

Jane Denton MBE, Director of the Multiple Births Foundation said: "The Multiple Births Foundation is pleased to work with our fellow charities to raise awareness and support Sands during Baby Loss Awareness Week and through our membership of the Bereavement Care Network."

Full details of all the participating charities and weeks events can be found on the Baby Loss website - http://babyloss-awareness.org/

Have you had a baby at Queen Charlotte's or St Marys?

Anyone with experience of having had a baby at Imperial in the past 3 years is welcome to join the hospital's Maternity Services Liaison Committee (MSLC) and become involved in the development of future maternity services in your area. The MSLC is a group of parents, midwives, supervisors, doctors and managers who work together to improve maternity care. INTERESTED? Contact jackie.baxter@imperial.nhs.uk or gill.perks@imperial.nhs.uk

MBRRACE-UK Confidential Enquiry Into Maternal Deaths Report 2015

The Multiple Births Foundation welcomes the MBRRACE-UK Confidential Enquiry Into Maternal Deaths Report 2015 The full report, the lay version of the report and an infographic illustrating the headline findings can be downloaded from the MBRRACE-UK here: https://www.npeu.ox.ac.uk/mbrrace-uk/reports

Report into maternity services for multiple births

The Multiple Births Foundation welcomes the Tamba and NCT Maternity Services Report: Multiple births. The report shows there are still huge variations in the care families with a multiple birth experience across the UK.

Disappointingly compliance with the NICE guideline on Multiple pregnancy (link) as assessed in the report ranges from 40% - 72% regionally showing a real gap in staff knowledge and understanding of the differing needs of a multiple birth even in the most complaint of areas. This highlights the need for the Multiple Births Fountain to continue its vital work educating and training healthcare professionals.

The survey also emphasises the need for the Multiple Births Foundation, Tamba, NCT and other baby charities, parents and healthcare professionals to continue to campaign for better services and outcomes for families with a multiple birth.

If you are a healthcare professional and would like to talk to us about training opportunities please call the office on 020 3313 3519

Have your say on how the HFEA can better support patients, donors and their families

The Human Fertilisation and Embryology Authority (HFEA) want to hear the views of fertility patients so that they continue to improve the services and information they provide.

Please click on the link below to get more information and to give your feedback in a survey that will take approximately 10 minutes to complete:
http://survey.euro.confirmit.com/wix/p1834307609.aspx?s=2

Pioneering palliative care guidance published by Chelsea and Westminster Neonatal Team

Chelsea and Westminster Hospital NHS Foundation Trust has published the first ever guidance of its kind to support staff caring for very young babies with life limiting conditions who need palliative or end of life care.

Details of The Practical guidance for the management of palliative care on neonatal units can be found on the hospital's website here: http://www.chelwest.nhs.uk/about-us/news/pioneering-palliative-care-guidance-published

New National Perinatal Epidemiology Unit (NPEU) report on Maternity care for women having a multiple birth.

The Multiple Births Foundation welcomes the NPEU’s report into Maternity care for women having a multiple birth which reflects the care experienced by expectant and new multiple birth mothers.

The report reveals that antenatal admissions to hospital and overnight stays for women expecting a multiple pregnancy are twice (37%) as likely as for expectant parents of singleton pregnancies (18%). Pregnant mothers-to-be of multiples are twice as likely to see an obstetrician or other hospital doctor during their pregnancy, and their hospital stays after birth are significantly longer with 61% of new twin mothers, and 67% of new triplet mothers staying in hospital for four days or more, compared with just 18% of new singleton mothers. In addition over a third of new twins (37%) and nearly two thirds of new triplets are admitted to a neo-natal unit, as opposed to just 9.2% of singleton babies.

In response to the report’s publication Jane Denton, Director of the Multiple Births Foundation said: “This report is welcome and helpful. It highlights the need for greater access to midwifery care as the pregnancies are more complex and for more support for mothers and fathers in caring for twins and triplets clearly showing that the Multiple Births Foundation’s work with parents of multiples and healthcare professionals is vital.”

Identical Twins required for University Study

20 sets of identical twins aged 16 and over are required for a study at Manchester Metropolitan University. The study is looking at life experiences of identical twins and will involved only one visit to Manchester, if for some reason you can't go to Manchester alternative arrangements can be made. Participants’ expenses will be covered. If you are interested in taking part please contact Mvikeli Ncube at ncubemvikeli@yahoo.com.

Parents of twins and triplets get new help with feeding

For the first time, practical evidence-based advice and information on feeding twins, triplets and higher multiples is now freely available to parents. 'Feeding twins, triplets and more', a comprehensive guide, is published today by the Multiple Births Foundation (MBF) with funding from the Big Lottery Find and based on research undertaken by the National Perinatal Epidemiology Unit.

"In the UK, one in 32 babies is born a twin or triplet," says Jane Denton, director of the Multiple Births Foundation, "and how to feed two or more babies is one of the first questions parents ask when a multiple pregnancy is diagnosed. Yet our research suggests that many mothers want more guidance on feeding."

"Twins and triplets are more likely to be born preterm and of low birth weight, requiring admission to a neonatal unit," she adds. "Many will not be able to feed directly for the first few days or sometimes weeks. It can be a very anxious, even dramatic, time for the parents.

"But all mothers with twins, triplets and higher multiples need specific information and advice to support them, whether breastfeeding, formula feeding or doing a combination of both."

The booklet aims to answer questions parents may have before the birth as well as serving as a practical guide once the babies are born. How on earth do I breast-feed triplets? Should I feed my twin babies separately or together? Shall I ever get any sleep at all?

These are among the questions going through an expectant mother's mind as she awaits the birth of twins, triplets or more. All too often, mothers of more than one baby have had too little access to the answers. Among the myths this booklet dispels is that mothers produce only enough breast milk to feed one baby. Supply grows to meet demand, it says.

"We do recommend that breast milk is best for all babies, and the booklet shows how to do it, even with triplets and quads," says Jane Denton. "Many mothers with twins and triplets tell us that they would have breastfed their babies for longer if they'd had more specific help and advice. However, above all we want mothers to feel supported, confident and happy with feeding their babies."

With clear text and informative diagrams, the booklet covers the different feeding options; how to organise more than one baby; feeding sick or premature babies, triplets and quads; preparation of feeding equipment; and introducing solid foods. It also includes useful tips on returning to work, as well as contacts for support and information groups.

"The MBF booklet provides an invaluable one stop guide to feeding multiples for parents and healthcare professionals alike," says Anna O'Donoghue, mother of two-year-old triplets Kate, Jessica and Holly. "When I was pregnant with triplets, I could find no definitive resource for information about breastfeeding, and I instead had to glean what I could from a multitude of sources and rely on a great deal of trial and error."

"Most people have little idea just how demanding multiple babies can be," says Jane Denton. "And with multiple birth rates rising year on year, the need for correct care has never been greater."

Mothers seeking support are encouraged to contact their own midwife or health visitor in the first instance, but may also seek help from the Multiple Births Foundation. 'Feeding twins, triples and more' is available free as a download at www.multiplebirths.org.uk or call 020 3313 3519 / 020 8313 3519 for a hard copy.

ACeBabes is the UK's leading charity providing information, support and advice to the growing number of people using assisted conception as a way to bring about their longed for family.

All babies and children are precious, but those who have been conceived or adopted following a struggle with infertility are perhaps even more so. Recognising this, Infertility Network UK, the national charity providing support and information to all those experiencing infertility, is delighted to add ACeBabes to the network to support all those whose family has arrived by a more difficult route.

The charity already provides support to those facing involuntary childlessness through the More To Life branch, but is now completing the circle of support by launching ACeBabes under its umbrella.

Sometimes after years of trying to conceive with many failures, couples who at last find themselves successful after treatment, continue to worry that the pregnancy will fail, but these couples often feel because they’ve been successful they’re not justified in contacting infertility support groups for help. Others feel an obligation to become ‘super parents’ and put added pressure on themselves and regularly there are stories in the media regarding assisted conception and risks to children, which are upsetting and concerning for families.

Infertility never leaves you no matter what the outcome is and we would like to let fertility nurses and midwives know about ACeBabes so you can pass the information on to patients who may benefit from the support the charity can provide to your patients.

We have a supply of leaflets, posters and information cards which we can provide and we would also be happy to come along and attend any events to talk about the organisation and the need for on-going support for those who have experienced difficulties in conceiving. For more information please visit the AceBabes website at: www.acebabes.co.uk or to request literature, contact: admin@acebabes.co.uk

PROFESSIONALS COME TOGETHER TO REDUCE RISK OF MULTIPLE PREGNANCY

Doctors, embryologists, nurses, other clinical staff, patient groups and the Human Fertilisation and Embryology Authority (HFEA) have come together to launch a new national strategy to reduce the number of multiple pregnancies – the single biggest health risk of fertility treatment.

Focusing initially on IVF, the strategy will aim to reduce the rate of multiple births from the national average of 24 per cent of all IVF births to 10 per cent over three years. In the first year (from January 2009), all clinics will be expected not to exceed the 24 per cent maximum.

Launched today in support of the strategy are:

  • a jointly agreed mission statement,
  • the One at a Time website containing authoritative information for professionals and patients, and
  • a series of regional workshops for health professionals over the next few months.

New professional guidelines published by the British Fertility Society (BFS) and the Association of Clinical Embryologists (ACE), setting out professional best practice, will be published in the journal Human Fertility in the next few weeks and will support professionals in their daily work.

Those involved in the development of the national strategy believe that change will only be facilitated through improved funding for assisted conception treatment.

Launching the strategy, Jane Denton, Director of the Multiple Birth Foundation, said:

“Infertility treatment requires dedicated professional teams to work together in helping patients make informed decisions about their treatment including the long term consequences of their choices. For many people who have gone through the emotional rollercoaster of fertility treatment, the prospect of having an instant family with twins is very appealing.

“Through the One at a Time campaign and its website, we hope to give professionals, patients and the public authoritative information about multiple pregnancy and births to help them understand the risks and consequences and why the aim with each IVF treatment cycle should be to give the best chance of having one live, healthy baby. “

Alun Elias-Jones, Consultant Paediatrician and Fellow of the Royal College of Paediatrics and Child Health, said:

“As doctors we have a duty to promote health and this includes considering not just the immediate desire for a child but the long term consequences of fertility treatment to the health and wellbeing of mothers and babies. The risk of an adverse outcome for a multiple birth is much greater than for singleton births. Some children have a traumatic start to life, extended stays in neonatal unit and others can have serious, long term health problems.

“For doctors like myself who care for these children through a lifetime of problems reducing the risks of multiple births is vital. With an increasing number of people undergoing fertility treatment each year it is important that all of us, professionals and patients, understand and address this issue.”

Rachel Cutting, Embryologist and member of the ACE executive committee, said:

“Latest advances in embryology now mean we can tackle the risks of multiple birth much more effectively than ever before. Professional guidelines written by the BFS and ACE will provide a clear, evidence based approach to judging embryo quality, the optimum time to transfer embryos and the importance of an effective cryopreservation programme. Embryologists are key to helping reduce multiple pregnancy.”

Dr Mark Hamilton, Chair of the BFS and Consultant Obstetrician & Gynaecologist , said:

“Whilst we must do what we can to reduce the burden of multiple births, it is important that we need to see the 2004 NICE guidelines implemented in full around the UK for elective Single Embryo Transfer to be carried out in as many patients as is appropriate and possible.

“There is no one size fits all and treatment has to be decided in partnership and based on what’s best for the individual. However, if patients did not have to worry about finding the money for their own treatment this would certainly be much easier to implement.”

Further information about the campaign is available on the One at a Time website at: www.oneatatime.org.uk

Notes to Editors:

  1. The national strategy stakeholder group was invited by the HFEA to develop the strategy following the publication of the HFEA Report “One Child at a Time” in October 2006. This report is available on the HFEA website at: www.hfea.gov.uk
  2. The national strategy is supported by: Association of Clinical Embryologists, British Fertility Society, British Infertility Counselling Association, Human Fertilisation and Embryology Authority, Infertility Network UK, Multiple Births Foundation, Royal College of Nursing, Royal College of Obstetricians and Gynaecologists, and the Royal College of Paediatrics and Child Health.
  3. One in four IVF births in the UK results in twins or triplets compared to 1 in 80 births following natural conception.
  4. Multiple pregnancy can significantly increase the likelihood of dying, prematurity and low birth weight. It can also lead to long term health problems for children such as cerebral palsy and risks to mothers such as pre-eclampsia, diabetes and heart disease.
  5. The regional workshops will take place in: London (18 July), Birmingham (1 August), Glasgow (22 August) and Leeds (28 August).

For further information please contact Brenda Irons-Roberts at the HFEA Press Office on 020 7291 8224.

 


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