'I set up website to commemorate son'

'I set up website to commemorate son'
Jane Elliott Health reporter, BBC News

When Helen Savage lost her first baby at 39 weeks she and her entire family were devastated.

Little Samuel was to have been the first grand-child on either side of the family and his arrival was very much anticipated.

But just a week before being born he had died from Group B streptococcus - one woman in four carries this bacteria in her vagina, although she may have no symptoms and be unaware it is there. Babies can come into contact with it while still in the womb or during birth. Some develop serious conditions like pneumonia, meningitis or septicaemia, while, others, like Samuel die.

Some women know they are at risk of the infection, because of previous problems, a premature rupture of their membranes, or because a urine test during pregnancy, reveals that they have the infection. But in Helen's case there were no indication and she only found out the cause of death six weeks later.

"I had a trouble free pregnancy," said Helen, 29, from Lisburn, Northern Ireland.
"We first found out we were expecting Samuel in June 2004, and from the moment we saw two lines on the pregnancy test we were so excited about his arrival. Daddy was sure he was a boy right from the start, but Mummy took a bit more convincing. More

Many baby deaths 'can be stopped'

Growth problems could be spotted during pregnancy

As many as 1,000 stillbirths each year could be prevented if clinicians were able to spot when foetuses were not developing properly, a study suggests.

The NHS's Perinatal Institute will unveil research this week which points to "restricted foetal growth" as the key factor in many stillbirths. If this was picked up in pregnancy, these babies could be delivered earlier and have a greater chance of survival.

Britain has one of the highest stillbirth rates in Western Europe.

The 10-year-study by the Perinatal Institute found that some 40% of the 4,000 babies stillborn each year have growth problems. Of these, around two thirds may have survived if action had been taken.

"We are excited about these findings," said the institute's director, Professor Jason Gardosi.

"If we can recognise that babies are not growing as they should then they can be further investigated and, if necessary, delivered at the right time, and in a good condition, rather than being left in the womb and at continued risk of dying."

Professor Gardosi said in addition to the findings on foetal growth in relation to stillbirth, researchers were also starting to identify "an issue about resources", particularly when it came to the number of cases midwives must deal with.

These remarks chime with statements made by the new president of the Royal College of Obstetricians and Gynaecologists, Professor Sabaratnam Arulkumaran, who believes there are too few consultants and midwives to guarantee the safety of mothers and babies.

In a speech next month, he will cite data showing that most babies die during the night when hospitals have fewer consultants on duty. In an interview with the BBC last month, he said he believed there was too much focus currently on allowing women to give birth at home, and not enough attention on improving conditions in hospital where the majority ultimately give birth.

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

Stillbirth Support Symposium

First Candle (SIDS Alliance) is pleased to announce that it will host its inaugural Stillbirth Support & Advocacy Symposium October 22-23, 2007.

Set to coincide with a meeting of the Stillbirth Collaborative Research Network, the symposium will offer stillbirth parents an opportunity to hear from leading stillbirth researchers and meet with representatives on Capitol Hill. Additionally, we will launch a National Stillbirth Peer Support Network, providing training to peer advocates who will offer support to bereaved families in their communities.

As space is limited, First Candle is asking interested individuals to complete a pre-registration application on the First Candle web site at www.firstcandle.org. It is their goal to select a geographically diverse, ambitious group of participants that will help us gain the momentum needed to push this important agenda forward.

Deborah Boyd
Executive Director
First Candle/SIDS Alliance
Phone: 1-800-221-7437

The benefit of hindsight

This post is for those whose babies died silently in utero before the onset of labour.

As I have read blogs of bereaved parents over the last year, I have come across several posts which relate observations which only became clear with the 20:20 vision of hindsight. I thought it might be helpful and potentially even save a life to gather those together in one place. I will relate my own hindsight observations here. If you would like to, please post yours in the comments.

My son died in utero at 40 weeks + 4 days, 3 days after a full check-up with heart rate monitoring and ultrasound.

• In the last week of my pregnancy, I awoke pretty regularly three times a night - at 1am, 3am and 5am. I remember sleeping well on one of the last nights. It's hard for me to recall which one. But I remember waking up and thinking, "that's good, I needed a good night's sleep". With hindsight I think it was a very bad sign and that my son was already in severe trouble.
  
• Again I don't remember which day exactly this was. But I had a funny "feeling" for about 15 minutes. My legs went suddenly weak and I felt a bit flu-ey. I even mentioned it to my mother who was there. But the feeling passed by and I didn't think it important. Now I wonder whether that was a change in blood circulation or something like that.
  
• I wasn't doing kick counts. But with hindsight, I strongly feel that my baby's movements slowed down significantly in the last day. Since I wasn't monitoring them, I didn't really notice until it was too late.

We never found out why my son died. It's possible that taking these observations as alarm signals might have saved him. It's possible that it would have made no difference and he would have died anyway. But you all know that you would take that possibility of changing the world around in an instant, no matter how slim.

CiaoLapo Onlus

Please note the addition of a new link in the sidebar - to CiaoLapo Onlus.

The founder, Claudia, writes:

www.ciaolapo.it/en is the website of CiaoLapo Onlus, a non-lucrative, non-religious association founded in 2006 by my husband and I (both medical doctors) after the stillbirth of our second child, Lapo. Aims of CiaoLapo Onlus are to promote research on stillbirth and to offer psychological support to parents after stillbirth or perinatal death. We are currently offering weekly online self-help groups to breaved parents and free online psychological and gynecological consults to the associates. During last March, our first national congress was held in Florence and the second one is going to take place in October.

Request for Advice

Kendra's Mom recently wrote to the Directory, explaining that a friend is facing the possibility of losing twins to pre-eclampsia. She is requesting advice on how best to support her friend. If you think you can offer some insight or support to Kendra's Mom, please visit her blog.

Thanks to Kendra's Mom for thinking of the Directory as a location where mutual support may be found. That is what we are here for.

Updated: one of the babies' heart stopped beating in utero and the other was born alive weighing 400g / 14oz but sadly died later. See Kendra's Mom's blog for more details.

National Stillbirth Society News

We have had so many parents ask how they might get their baby's picture retouched that we made it our goal to find an answer. The answer we have come up with is almost too good to be true. Not only have we located a source but the source, one of the largest retouching studios in the country, will retouch a photo of a stillborn baby AT NO CHARGE. THERE IS NO LIMIT TO THE NUMBER OF MOTHERS THEY WILL DO THIS FOR. IF YOU WERE TO PAY FOR THE SERVICE IT WOULD COST $49.95 AND UP!

At this moment we're finalizing the details and logistics so that we the Missing Angel website can interface with their website. We hope by October 1st the service will be up and running. It's called "The Angel Pic Project" and when it's ready we will post it on the home page of http://www.missingangel.org/.

We're telling you this now so you have an opportunity to search through your pictures to find the best one. I will tell you I have seen examples of their work and it is incredible the difference. If you have a photo that you may have been uncomfortable showing family and friends get ready. You'll be able to send a scan, if you have one, or you can look up a participating dealer in your area who will scan a photo for you (limit two) and send it in for you. The same dealer will also give you a free 8" x 10" portrait when the scan comes back (in about 2 - 3 weeks).

Just one more way The National Stillbirth Society is working to bring comfort and closure to stillbirth parents and their families.

Richard K. Olsen, Founder
THE NATIONAL STILLBIRTH SOCIETY
www.stillnomore.org
missingangel@cox.net
602-216-6600

New Blogs Recently Submitted

A warm welcome to the following Bloggers:

• Reproductively speaking...
• Not What I Expected
• My Un-Mended Heart
• The Zoromski Chronicles
• In 2 Me See