Hanami Prints Blog: Learning to Live Without Our Children » Infant Death

Faith’s Lodge: A Place Where Hope Grows

hanamipapa — Sat, 05 Dec 2009 00:56:18 +0000

Faith’s Lodge provides a place where parents and families facing the serious illness or death of a child can retreat to reflect on the past, renew strength for the present, and build hope for the future.

Faith’s Lodge is located on 80 acres of the lush north Wisconsin forest. With eight beautifully designed guest suites, each accommodating up-to six people, Faith’s Lodge is a wonderful place for bereaved families to reflect and heal. In addition to the serene surroundings and cozy accommodations, Faith’s Lodge also provides optional activities such as “professionally-led discussion groups, therapeutic arts and crafts and north woods adventures.”

In operation since July 2007, Faith’s Lodge has served over 300 families and is the only facility of its kind in the country. Operating as a 501(c)3 non-profit organization, Faith’s Lodge offers these wonderful services at a minimum donation of $25 per night. “However, no one will ever be turned away for financial reasons.”

Download the Faith’s Lodge brochure here.
Download the Faith’s Lodge brochure for professionals here.

Other Useful Links:

Nominate Faith’s Lodge for the Chase Community Giving Contest on Facebook!

I just found out about this organization today and the whole concept has blown me away! Our family would have benefited tremendously from this healing retreat. A safe place away from the world, quiet, serene and surrounded by nature would have done the heart and soul some serious good during those first few painful years.

So today I am passing this message onto any eyes and ears that will take note. Spread the word about Faith’s Lodge and help nominate them for the Chase Community Giving Contest on Facebook! Faith’s Lodge has a wonderful opportunity to win more than $1,000,000 through the Chase Community Giving Contest with the assistance of Facebook users.

For all of you Twitter types out there copy and paste this message “Join me in voting for Faith’s Lodge to win more than $1 million in the Chase
Giving contest! Visit http://bit.ly/A3DZw“

What do you think about Faith’s Lodge mission? Would you have benefited from their healing retreat? Leave your thoughts below.

Grief Support After the Death of a Child: The Compassionate Friends

hanamipapa — Wed, 25 Nov 2009 18:21:30 +0000

The Compassionate Friends is a support group dedicated to help families following the death of a child of any age. Incorporated in 1978, The Compassionate friends began with a chaplain, Simon Stephens, and a set of grieving parents at a hospital in Warwhickshire, England. Chaplain Stephens realized that the support these grieving parents gave to each other was better than anything he could have provided.

Mission
The mission of The Compassionate Friends is to assist families toward the positive resolution of grief following the death of a child of any age and to provide information to help others be supportive…

With more than 600 meeting locations around the country, The Compassionate Friends deliver in building an emotional support group of grieving families whom all share in dealing with the devastating loss of a child. Meetings are not moderated by therapists but instead bereaved parents, siblings and grandparents in all stages of the grieving process.

I first heard about The Compassionate Friends through an old schoolmate who lost her son a few days after giving birth to him six years ago. To date, she is still very active in her local chapter assisting in fundraisers and community events. What I was most impressed by was that shortly after her son passed, she was taken to a meeting being held within the same hospital and was immediately embraced both physically and spiritually–the group sobbed together and let her know she was not alone. Crying together, my friend told me that she was so thankful that there was a group of people out there to help her walk the difficult path of grieving her son.

Useful Links:

Number of stillbirths a ‘national tragedy’, says charity – Times Online

hanamipapa — Wed, 18 Nov 2009 18:37:26 +0000

Here is a story I found today about an organization called Sands based in the UK who is calling on Scotland’s Government to ensure that stillbirths and neonatal deaths are recognized as a “major health issue and addressed as a matter of urgency and priority.”

Pressure on understaffed neonatal and maternity units and a lack of funding for research into stillbirth is contributing to the avoidable deaths of almost 500 babies a year, according to researchers.

In a report to be presented to the Scottish Parliament today, Sands, the stillbirth and neonatal death charity, claims that the lives of many babies could be saved by improved services and increased funding for research.

The charity says that despite the figure of 325 babies stillborn in Scotland in 2008 — one of the highest per capita in Europe — there is currently no research into understanding stillbirth issues underway, a situation that it described as a “national tragedy”.

The number of babies stillborn in Scotland is equal to four times the overall deaths from MRSA, twice the number of adults who are killed in car accidents and ten times the number of cot deaths.

Related Links

Number of stillbirths has fallen sharply

Sands has called on the Scottish government to ensure that stillbirths and neonatal deaths are recognised as a major health issue and addressed as a matter of urgency and priority.

Neal Long, chief executive of Sands, said: “Almost 500 babies dying every year in Scotland is a national tragedy. For too long these deaths have been ignored and yet here is compelling evidence to suggest that many babies’ lives could be saved with improved delivery of maternity services and increased funding for research.”

The report, Saving Babies’ Lives, reveals that Scotland has one of the highest perinatal mortality rates in Europe — that is, babies who are stillborn or die within the first seven days of life. Mortality is highest in urban areas with the worst social deprivation and poorest general health indicators.

The stillbirth rate is 1 in every 200 babies born in Scotland, a figure which has not changed significantly since the 1980s.

Over half of all stillbirths are unexplained, the majority of unexplained deaths occurring in low-risk pregnancies. The campaigners want midwifery and obstetric training to focus more attention on the possibility that things can go wrong in pregnancy and how to recognise signs of risk and minimise those risks.

The report provides evidence that although per capita funding of maternity services in Scotland is comparably better than for England and Wales, there are still staffing pressures in maternity units and antenatal clinics.

“There is increasing evidence that many deaths related to events in labour are potentially avoidable,” it states. “Quality Improvement Scotland’s recent audit of intrapartum deaths (babies dying during labour) revealed alarming failures of care: in 44 per cent of cases where the baby died there was evidence of ‘major sub-optimal care’, which may have contributed to the death.”

Of the 53,000 babies born in Scotland every year, around 8,000 — one in seven — are admitted to neonatal units. Scotland’s premature birth rate is higher than in England and Wales and is increasing. Yet while the pressure on units is increasing, Scottish neonatal units continue to be understaffed and overstretched resulting in unnecessary transfers of babies and the closure of units to new admissions.

Babies in Scotland, the report claims, are not guaranteed one-to-one nursing care in intensive care units and says Health Boards must commit to a long-term recruitment and training strategy for the whole neonatal workforce to achieve minimum standards of care for babies.

There is also failure to accurately identify and understand risk factors for stillbirth, which include obesity, smoking, social deprivation, teenage pregnancies and older mothers. All these factors are high and rising in Scotland.

Gillian Smith, of the Royal College of Midwives, said: “The RCM in Scotland welcomes this report and recognises that more work and research has to be carried out around the loss of these babies.

“We share concerns around the reorganisation of maternity services and would support Sands in their request to make sure that during these reorganisations we do not lose the valuable input not just from midwives who specialise in providing support to parents and families at this time but also for onsite facilities which help families come together and start the grieving process.”

Case study

Not once, but twice Marion Currie has experienced the devastation of losing a baby at an advanced stage of pregnancy. Her daughter, Lesley, was stillborn in 2002, and her son, John, in 2006.

Both pregnancies had apparently been proceeeding quite normally and she had no reason to worry. With better knowledge, she believes, it might have been possible to anticipate problems and her babies might have lived.

“With my son, it was believed to be placenta failure. With my daughter, the cause was unknown, but perhaps in both instances if simple tests had been available, and there was more knowledge, it might have been different, it’s difficult to say,” said Ms Currie, 47, from Musselburgh, who edits a newsletter for the charity Sands. She has two other healthy children aged 14 and 4.

“If you could just identify which pregnancies are high risk, but appear to be low risk, then I’m sure babies’ lives could be saved. We need more research.

“There is an expression that says a new mother is born with every child. When the child is born, the mother is born. When the child is lost, that mother is left. I have two living children but I am very much aware that two children are missing from my life.

“No children are interchangeable or replaceable and every child is an individual. There are Lesley and John-shaped holes that will never be filled. And of course life goes on, you have to care and nurture your living children, but the holes remain. ”

via timesonline.co.uk

Posted via web from hanamiprints’s posterous

Long-Term Consequences of The Death of An Infant on Surviving Siblings

HanamiMama — Thu, 30 Apr 2009 16:32:56 +0000

A study into the long-term consequences of the death of an infant on surviving siblings has recently been published. While the focus of the study involved infants who died in the neonatal intensive care unit (NICU), it seems the implications can also explain the affects of stillbirth, as well as the death of older babies, on living siblings. One of the most interesting findings shows that regardless of when the baby died – either before or after the surviving siblings were born – there was no change in how the living brothers and sisters dealt with the loss.

I have often wondered how Nicolas’ death will affect my living son, Christopher Nicolas, who was born three days shy of Nicolas’ first birthday in February 2007. My need to honor and celebrate Nicolas’ memory through displaying his photographs all over my home, lighting candles on important days, wearing special memorial jewelry – and simply speaking his name – has at times competed with my need to protect Christopher. My instinct tells me Christopher will be a better person for having known his brother, if only through my memories. But I worry that introducing the concept of death, and that death can happen suddenly and unexpectedly even to healthy infants and children, will be a lesson on the cruelty and unfairness of life – a lesson Christopher should not have to learn at such a young age.

I was relieved to read, at least according to this study, that creating rituals in celebration of the baby who died – sharing photographs and memorial keepsakes, participating in family traditions to honor birthdays and holidays – establishes a symbolic link between siblings and connects them in healthy ways. Surviving siblings who grow up celebrating the memory of their deceased baby brother or sister experience fewer negative consequences and feelings than those whose parents kept their grief for the baby private. Parents who try to shield their surviving children by never speaking of the baby who died ironically cause more trauma in the long term.

Death Of A Child In The Neonatal Intensive Care Unit: Long-term Consequences For Siblings
ScienceDaily (2009-04-06) — Little is known about the long-term effects of the death of a child in the neonatal intensive care unit on survivor siblings. These siblings may encounter unforeseen emotional difficulties and developmental consequences that can occur whether the siblings are born before or after the infant’s death. … > read full article

What Do You Call Your Child Now?

HanamiMama — Sat, 11 Apr 2009 07:23:47 +0000

In the months after Nicolas died, I scoured the Internet for information: medical information on the cause of his death, statistical information on how many babies die in this way, grief information on what to expect next, and support information on how to live without my son. I became intimate with a world I never knew existed, a world of mothers, fathers, grandparents and siblings struggling with the impossible loss of a child. I spent countless nights until four in the morning reading stories of women like me – women who couldn’t sleep, couldn’t eat, couldn’t do anything but read stories of women like them. I noticed a common theme: many mothers referred to their children as “angels,” especially when their children died as infants or toddlers. Whether Christian, Buddhist, Muslim, Jewish, Atheist or Agnostic, it didn’t seem to matter.

I resisted the temptation to give Nicolas this name. I imagined myself years from now, an old woman, no living children, no grandchildren, just a curio cabinet full of winged figurines supplicating in the most uncomfortable positions. It seemed too easy, too obvious, to call my infant son an angel. Yet, I was at a loss for what else to call him. I’m not talking about his given name; I am talking about a metaphor for my dead baby that softens the shocking sound of “my dead baby.” Something that helps me cope with his unfair and unimaginable death. “Angel” has become my cushion.

I now accept and even embrace my chosen metaphor for Nicolas. Nicolas was as close to perfection as is possible. When he was first born, I was absorbed with his silent, gentle presence. I felt the hush of the sacred in the delivery room. I hesitated to touch him for fear of disturbing his purity. Nicolas did not live long enough to keep me up all night with his colic, throw his Cheerios on the carpet, play his music too loud, or put a dent in my car the first time I let him drive it. He did not live long enough to secure his place amongst the fallen ranks of humanity like the rest of us. Nicolas slipped silently into this world from a place of perfection, lingered a moment, and then slipped silently back into the dark. For me, no other word but “angel” can describe Nicolas.

I don’t own a curio cabinet or a porcelain angel – not yet.