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

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."

The parents with the hardest choice of all

Charles Rodeck is a pioneer in foetal medicine, a field in which huge scientific advances can have a terrible emotional cost. Here he speaks frankly about the painful dilemma - to agree to a termination or take the risk of having a disabled child - which thousands of couples must confront every year

Amelia Hill, Sunday July 15, 2007, The Observer

Sitting ramrod straight in his chair, George Woodall could not be any clearer. 'Cutting to the chase, if there's anything wrong with this baby at any stage, we don't want it,' he tells Professor Charles Rodeck, Britain's leading expert in foetal medicine. 'We want to have all the tests as soon as possible, regardless of how risky they are. We just want this over with.'

Lying on a bed next to her husband, Karen stares at the ceiling in silence. Still dazed by the speed with which her perfect world has begun to crumble around her, all she can think of is how light-hearted she was, two days earlier, when she arrived at her local hospital for her 12-week pregnancy scan.

'Almost as soon as the doctor began the ultrasound, I knew something was terribly wrong,' she told The Observer after her consultation with Rodeck. Within minutes, Karen says, she went from feeling happier than ever to more distressed and confused than she had thought possible. More

Globe and Mail: Burying the unborn

CAROLYN ABRAHAM
From Saturday's Globe and Mail
May 26, 2007 at 2:24 AM EDT


On the afternoon of Feb. 3, 25 people gathered in the chapel of Smiths Funeral Home in Sarnia, Ont., to honour the passing of Angel Lynzey Burden.

The community sent flowers and cards of condolence. Angel's ashes sat on a table up front, in a decorative urn half the size of a coffee cup. (continue)



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New York Times article on perinatal hospice

A March 13, 2007 article in the New York Times discusses options for parents facing poor prenatal diagnosis or stillbirth. Hospice programs help parents make the most of the brief time they have with their babies.