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Women want to start charity for families who have lost babies

United: Tania Targett, Marina Sousa, & Pia Hopkins looking at the scrapbook Tania put together to remember her son Jack's brief life.

'Get over it', and 'have another baby' are just two of the many insensitive comments that parents who have lost babies hear on a daily basis.

Many grieving parents feel a terrible sense of loneliness.

But a group of mothers want people in this situation to know that they are not alone. There is help.

The group, which is forming a chapter of Sands, would like to speak with other parents who have been affected by the loss of a baby.

"When you go through it it is so important to talk with other people who have gone through it also," said Mrs. Targett, who lives in Warwick.

Mrs. Targett and her husband, Colin, lost their son, Jack, last December to a rare gastrointestinal blockage.

The problem was only picked up last December, when Mrs. Targett was 35 weeks pregnant. She was flown to Boston Children's Hospital in Boston, Massachusetts, but Jack lived only a few hours.

Mrs. Targett's story is every expectant mother's nightmare.

"I started developing pains," she said. "I went in and out of the hospital. They couldn't find anything wrong with the baby.

"I was told he was fine. They were looking for things that were wrong with me such as appendicitis.

"That took place over eight days. Finally, I had my third ultrasound and was made aware that Jack's bowel was dangerously swollen."

Jack was delivered by emergency c-section and weighed over six pounds.

"He was very alert," said Mrs. Targett. "But when they took him to the operating room they found that his bowel was twisted and had a blockage. It had got inflamed because of how long it went undetected. Once it twisted the bowel cut off the blood supply and the bowel died.

"That is what caused his death. It can go undetected for a long time."

It is estimated that what happened to Jack happens in about one in 5,000 births.

When Mrs. Targett returned to Bermuda she found there was little in the community to support grieving parents.

She is still trying to find a local counsellor who specialises in grief. She felt very much alone.

"Pia Hopkins and I had known each other socially a few years ago," said Mrs. Targett. "She came to me and told me that she had had a similar experience. I didn't know. She said 'If you want someone to talk to I am here'."

Shortly before Mrs. Hopkins contacted her, Mrs. Targett was also referred to Marina Sousa who also lost her baby, Helena, in December.

"These guys have saved my life a million times," said Mrs. Targett. "When I talk to them they don't tell me what I should be doing to get over it. They know I can't get over it. They know that all I can do is try to make it through the next day.

"You get a lot of insensitive comments after you lose a child. You also get a lot of people who are afraid of you. They are afraid to talk about your child, when really all you want to do is talk about your child.

"I hate to think that there might be other mothers out there who don't have someone else to talk with."

All three women carried their babies almost to term before losing them.

"With my situation I got to 30 weeks pregnant after a complication-free pregnancy and noticed that the baby wasn't moving," said Mrs. Hopkins, who is married to Lloyd Hopkins. "I went in and had an ultrasound and the baby didn't have a heartbeat.

"I had to be induced. I went through a 40-hour natural delivery which was terrible."

And one of the scariest things for the Hopkins was that no one could say why their baby died. Numerous tests done at King Edward VII Memorial Hospital were inconclusive.

"I continued searching for answers," said Mrs. Hopkins. "I ended up having quite a lot of testing done in the United States."

Eighteen months after Jake's death a doctor theorised that while pregnant, Mrs. Hopkins may have contracted fifth disease, otherwise known as 'slapped cheek'.

This is the erythrovirus. Toddlers often get it and it is characterised by a body rash and red cheeks. It is fairly mild for most people, but can cause a spontaneous abortion for pregnant women.

In Helena's case, she became distressed in the womb and swallowed meconium. Meconium is essentially babies first bowel movement. It got into her lungs. Helena never opened her eyes.

"She got into stress during delivery and there wasn't any notice of this," said Mrs. Sousa who is married to Scott Sousa. "There were no alarms, no beeping on the foetal monitor and when she was delivered, her heart rate was very low.

"They were not able to revive her, as she had swallowed the meconium too much. It had gotten into her lungs and it was too late."

Mrs. Sousa said she didn't blame the hospital.

"I would like to see more up-to-date equipment in the maternity ward that would have picked up that my daughter got into trouble," she said. "But this is Bermuda."

Until the delivery, Mrs. Sousa's pregnancy had also been free of complication.

"We planned to have a really nice Christmas with the baby but it didn't happen," said Mrs. Sousa. "The other mothers went home with their babies and I didn't."

After two miscarriages, Mrs. Hopkins became pregnant again, but this time her experience was by no means "worry free".

"It was terrifying going through another pregnancy," she said. "I was exceptionally anxious. It wasn't a happy, joyful time.

"I should have taken every day as it came, but I had a very hard time bonding with the pregnancy. I tried not to because that was the only way that I could cope."

She knew that she couldn't contract fifth disease twice, but now she worried about all the other things that could go wrong.

"I knew that couldn't happen again, which was a bit of a relief. But I knew of all the other things that could go wrong.

"Fortunately, the obstetrician I had here was mindful. I had extra testing and extra ultrasounds.

"I saw the same ultrasound technician all the way through my pregnancy. They were very good at helping me get through it.

"They also liaised with my obstetrician in New York and followed his protocol as to what I should do throughout my pregnancy."

Her son Josh is now over a year old.

The average pregnancy manual dedicates about a page to the possibility that things might go wrong with the baby.

"One of the books that all expectant mothers read devotes exactly one paragraph to the fact that your child might die," Mrs. Targett said.

"There are portions of that book that say 'call your doctor immediately', but in Bermuda the doctor's offices are sometimes closed, or they might not have answering machines.

"The response time is slow. It is confusing because you don't know what to do. Do I show up at the Emergency Room?"

Unfortunately, miscarriage and infant mortality can be taboo subjects in Bermuda. No one wants to talk about it for fear of upsetting the parents.

"You don't read about these situations," said Mrs. Targett. "No one talks about it. And it is the page in the book you skip over."

Mrs. Targett feels the numbers of newborn deaths recorded at King Edward VII Memorial Hospital may be higher if babies who were rushed overseas and died in foreign hospitals, were included.

Mrs. Hopkins urged other women to follow their own instincts.

"If your intuition is telling you that something is not right, trust that intuition and follow it," she said.

She said childbirth classes needed to educate mothers early on about the warning signs of potential problems.

"It is not to frighten mothers, but just to create an awareness," she said.

"During my pregnancy I didn't know what questions to ask," said Mrs. Sousa. "I knew my doctor was very busy. I didn't want to be one of those women calling every five minutes with a pain here or there. I didn't want to be a burden. "

Mrs. Hopkins said that in many obstetricians' offices in Bermuda — there are four currently to care for 850 children born each year — women often have a five-minute window to speak to their doctor.

"You know that they are under a lot of pressure," she said.

"The obstetrician office I am with now is a lot more understanding and compassionate," she said. "When I said I had had miscarriages they said they really wanted to take care of me."

Their support group is for people who have lost children whether it be recently or some time ago.

"It is for people who want a safe place to talk about that," said Mrs. Targett. "Between us, we aren't afraid to cry, but it is not to suggest that we are some kind of weeping society.

"When we are together we laugh and talk like anyone else, but we are not afraid to mention our children. It is a freedom more than anything. If I cry they don't mind, but they don't try to fix me."

Mrs. Targett and her husband are now working to raise money for the gastrointestinal research fund at Boston Children's Hospital.

The Targetts and a group of friends recently raised $13,000 for the fund at Boston Children's Hospital through the Bermuda Half-Marathon Derby.

People looking for a more anonymous support group or information can also check out the website of the Stillbirth and Neonatal Death (Sands) charity website www.uk-sands.org.

Sands has many chapters worldwide and runs many anonymous support forums.

For a copy of their report to the House of Commons go to http://www.uk-sands.org/no _cache/News/Newspage/article/93/98.html.

If anyone would like more information about the group you can contact the women at taniat@hotmail.com, pia_lm@yahoo.com or smsousa[AT]northrock .bm.

The facts about still births

Still births are more common than Down's syndrome and cot death.

A Stillbirth and Neonatal Death (Sands) charity survey found that prospective parents are not aware of risk factors and don't know what level of care they should expect, or when they should raise concerns.

Sands also found that in the United Kingdom the risk of baby death is underplayed, with a lack of focus on strategies for prevention.

Professor Jim Dornan of the Head of Foetal Medicine Department at Queen's University Belfast is quoted as saying: "...the real problem is low-risk mums with high-risk babies that are not being identified before their demise."