How to Use the Directory

Welcome to the Miscarriage, Stillbirth, and Infant Loss Directory. This blog is maintained by volunteers to act like a "telephone book" for blogs dealing with the loss of a baby. It is open to anyone who has ever lost a baby in any way - we do not discriminate by age of your baby or circumstance of your loss. If you think you belong here, then we think you belong here.

When you submit your blog, it is manually added to the list, so it may take some time for it to appear on the list. When you submit your information as requested below, it is easier to spot those emails that have been redirected into the spam mail.

Blogs are listed by category of loss. This is to help you find blogs that deal with circumstances that may be similar to yours. That being said, it can be a moving and healing experience to read the blogs of people who's loss is not similar to yours. You are welcome to read any of the blogs listed here.

Though there could be literally thousands of categories of loss, we have created 4 broad categories: before 20 weeks, after 20 weeks, after birth, and medical termination. Please note that most blogs dealing with extreme prematurity are listed in the "after birth" category even though the gestational age might suggest a different category.

As a warning to those feeling particularly fragile, many of the blogs listed here discuss living children or subsequent pregnancies. In the sidebar links, those blogs are usually marked with an asterisk(*). However, the circumstances of individual bloggers will change, and sometimes the listings do not get updated. It is possible to encounter pictures of living children or pregnant bellies on the blogs listed here.

We also have a list of resources (books), online links, and online publications that you may find useful. Scroll all the way to the bottom of the page to see the full listing of links.

We are so sorry the loss of a beloved child has brought you here. We hope that you will find some solace within the community that has gathered.
Please help us set up this resource for grieving families by:

Welcome

A. Submitting your blog information
(Email Subject: Please Add My Blog)
  • The link to your blog
  • The title of your blog
  • The topic of your blog (see sidebar - Personal Blogs)
  • If your blog discusses living children or subsequent pregnancy after loss

B. Submitting links to helpful web resources
(Email Subject: Please Add This Link)

C. Submitting titles of helpful reading materials or videos/films
(Email Subject: Please Add This Resource)

D. Adding a link to this site from your blog

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Showing posts with label poor outcome. Show all posts
Showing posts with label poor outcome. Show all posts

Sunday, January 11, 2009

First person

When Thelma Williams' baby died at birth, his body was whisked away and he wasn't spoken of again. It took 40 years to confront her grief and finally give a name to her lost child - James
As told to Kate Hilpern


The Guardian, Saturday 10 January 2009

I know I'm not the first woman to have found something she would rather not have discovered in her husband's suit pocket. In my case, it was a notification of the burial of our son. I didn't even know he had been buried until that moment. I had been told when I was six months pregnant that he would die the moment he left my body and somehow I just accepted it when he was whisked away and never spoken of again. This was the 1960s. You didn't talk about such things.

At least, I think it was the 1960s. That's the thing. It could have been 1970. I couldn't tell you what day it was, what season, let alone which year - such was my determination to follow the advice and forget, a task only momentarily but acutely interrupted by the burial slip.
We had another baby later on. I did everything they told me, resting almost solidly for nine months. On 26 December 1971, in the afternoon, Emma was born, a beautiful little girl weighing 7lb 13oz. Home we went with joy in our hearts and everything ahead of us.

It was only when Emma had her own baby, Millie, that it hit me. They say time heals, but there has been nothing chronological about my journey of grief. Nor anything predictable. Out of nowhere it came, threatening to drive a wedge between me and my granddaughter, a granddaughter I had loved unconditionally from the moment I knew she was conceived. But love is different from bonding, I have learned. Bonding is something I could not do with Millie until I acknowledged the loss of my baby boy. And when I had done that - and at last found a place for him to rest in my consciousness - I discovered a bond closer than I could have imagined.

It was 2004, the year before I turned 70, that Emma became pregnant. It was such wonderful news and at first I accepted my niggles of fear as normal. Doesn't every mother of a pregnant daughter worry like mad that everything will be all right? But my anxiety kept growing. Emma knew the reason immediately. Once she reached adolescence, I told her about my stillbirth. She had wanted to know why she had no brothers and sisters. I had surprised myself with how "together" I sounded when I spoke of it. I could relay the facts - facts of which I had hardly mentioned in decades - without a tear in my eye and after I told Emma, I found I could tell others too. Provided I stuck to the facts - and didn't enter the realm of feelings - I sounded like a survivor.

Emma knows me very well and as the weeks of her pregnancy totted up, she spotted the cracks in my shield. She wanted to protect me, to reassure me that everything was OK, but understandably she was starting to feel anxious too. Could what had happened to me happen to her too?

We spoke to the midwife and the specialist. They assured us that all was well. The specialist knew about the condition that befell me when I was pregnant and was shocked to hear how I was treated. He used the word barbaric. He asked if I would like to see the scan of Emma's baby for myself, so I could feel comforted. I did see the scan but I didn't feel comforted. More

Tuesday, January 1, 2008

Book deals with joy and grief of twins

Book deals with joy and grief of twins
Frisco: After losing one daughter, mother chronicles feelings
12:00 AM CST on Thursday, December 27, 2007
By DAN X. McGRAW / Special Contributor to The Dallas Morning News


Jennifer Hander plays with daughters Alexa, 2, and Addison, 13 months, at their home in Frisco. Ms. Hander has published a book, A Place of Peace, about the loss of Alexa's twin, Alysa.
They show her first day and her last, and what could have been for the Hander family's first pregnancy.

But 28 days after she was born, Alysa died because of complications of twin-to-twin syndrome. Her sister, Alexa, survived.

"We thought we were having the perfect pregnancy," Jennifer Hander said. "We were scared and shocked when we found out."

As Ms. Hander cared for Alexa during the first year of her life, she chronicled her feelings of losing one of her twin daughters. This year, the Frisco mother published a book, A Place of Peace, that documents that journey.

The twins' condition was diagnosed six months into the pregnancy. The syndrome causes twins to share blood vessels throughout the pregnancy, and at some point, one baby transfers its blood to the other, Ms. Hander said.

The cause of the syndrome, which occurs only in identical twins, is not known, Ms. Hander said.
Like many new parents, the Handers were unaware of the syndrome. The twins were delivered an hour after their parents were told about it.

Doctors who delivered the twins predicted that the Handers had a 90 percent chance of losing one child and an 80 percent chance of losing both.

"We just hoped that things would be OK," Ms. Hander said.

Because of the sudden transfer of blood, Alysa was left with very little blood in her body, while Alexa had too much blood. Doctors at the Medical Center of Plano worked to correct both problems.

However, 28 days later, Alysa died in her mother's arms. During those days, Alysa suffered bleeding in her brain that proved fatal.

"You are living the two extremes," Ms. Hander said. "You are mourning the loss of one twin but celebrating the life of another. The other twin serves as the reminder of what you might have had."

Because of the critical condition of Alexa, doctors ordered Ms. Hander to remain at home for the first four months of Alexa's life, and visitors had to be diligent about washing their hands to avoid getting the baby sick, said Lex Hander, their father.

"We had to be very strict," Mr. Hander said. "It was definitely a time she [Jennifer Hander] surrendered herself."

As Ms. Hander watched Alexa, she jotted down her feelings and thoughts of losing Alysa. She began to confront her feelings head on. The journal eventually evolved into a book about her experience.

"I was hesitant to publish it at first, because it has my deepest, darkest thoughts," Ms. Hander said. "But I was able to get over that, and my hope is that people can see me as an example."
Ms. Hander said she hopes people who read the book can use it to confront their feelings of losing a twin or become educated about the syndrome.

"If I can help only one person, it was worth it."

As Alexa grows up, Ms. Hander is teaching and reminding her of her sister. Ms. Hander refers to Alysa as the other sister who is an angel to Alexa, and it isn't something she is about to give up.

"It is just something that I intend to raise her with," Ms. Hander said. "I don't want it to be something she would be distraught about later."

Sunday, September 23, 2007

The tragic human cost of NHS baby blunders

Errors and negligence that result in stillbirths or disabled babies are costing Britain's hospitals billions in compensation. In this investigation, The Observer reveals how staff shortages are wrecking the lives of countless parents.

Denis Campbell
Sunday September 23, 2007
The Observer

What began as a routine pregnancy but turned into a tragedy for one family will finally end this week in a West Midlands courtroom. The hospital charged with caring for the mother will finally agree to pay £5m in damages to the parents of a boy left in a wheelchair, unable to communicate or do anything for himself, after suffering cerebral palsy because of mistakes made by staff during his birth.

It might sound like a lot of money. But consider - it costs £120,000 a year to provide the 24-hour, all-year-round care needed by the boy, who is now 16. The imminent award also reflects the fact that he will never be able to work, and that his parents have had to move to a bungalow and had it specially adapted to cope with his needs, such as a therapy room where he tries to do gentle exercises to stop his muscles from wasting away from moving around so little.

His parents, who have asked not to be named for legal reasons, would rather it had never come to this. 'When I told the boy's father that the report into the case we had commissioned from an independent obstetrician had said that it was negligence, that someone at the hospital hadn't done their job properly and that the care was sub-standard, he began crying,' recalls the family's lawyer, Lindsay Gibb, of solicitors Irwin Mitchell in Birmingham. 'He wanted us to tell him that it was no one's fault, that it was just one of those things, so to learn that it was avoidable was very difficult for him.'

The hospital's first blunder was to send the boy's mother home after hospital staff had failed to induce the birth. An expert witness who gave evidence for the family said that, given the late stage of her labour, she should definitely have been kept in until the baby arrived, if necessary by Caesarean section.

Later, when she was back in hospital again, the child became distressed while he was being delivered and suffered a sudden loss of air to his brain when meconium, the result of his first bowel movement, seeped into his lungs.

Usually, when maternity staff realise that is occurring, they suck out the meconium. But when the anxious personnel attending the woman sought advice by phone from a neonatologist, a specialist in dealing with newborn babies, the doctor seems to have failed to appreciate how serious the situation was. Her guidance meant nothing was done to tackle the baby's oxygen starvation and respiratory collapse. More