Friday 3 October 2014

Dr. Google Doesn't Always Get it Right!

Do you rely on 'Dr Google' for advice about your baby?

It's something many mums do and there is no doubt that the internet has become a fantastic resource for information and building connections and support networks with others going through the same as you, but it brings with it a danger too.

How reliable is the advice you're getting? How can you tell if what you are being told is correct, or putting your baby in more danger?

We've seen it ourselves over and over again on the issue of bumpers; web pages and blogs recommending them as a way to get more sleep, forums full of mums saying 'it's all scaremongering, bumpers are fine', facebook pages giving out misleading information by recommending alternative types of bumpers without pointing out the associated risks, or mis-quoting the correct advice.

October is Pregnancy and Infant Loss Awareness Month so there has been a real influx of 'advice' appearing on line over the last couple of days and that is likely to continue for the rest of the month. That should be something to celebrate, any new advice reaching parents is great news right? Wrong!! Some of you have drawn our attention to some very well meaning, but ultimately inaccurate and dangerous advice that is circulating on facebook and various blogs at the moment concerning everything from bumpers to blind cords, from pregnancy problems to vaccinations, from safe sleep to SIDS.

Please be aware that not everything you read on the internet is correct. The majority of these pages are simply misguided rather than malicious, but incorrect information can have disastrous consequences, regardless of intent.

A study published in 2012 by Matthew Chung, BSc, Rosalind P. Oden, Brandi L. Joyner, MSA, Alexandra Sims, BA and Rachel Y. Moon, MD found that overall, only 43.5% of the 1300 web pages looked at for the study provided accurate information. http://www.jpeds.com/article/S0022-3476%2812%2900628-2/fulltext#tbl1
With a survey in 2010 showing that almost 70% of adults reported that information found online has affected their health decisions or actions this is particularly worrying.

The study 'Safe Infant Sleep Recommendations on the Internet: Let's Google It' found the key phrases associated with the highest percentage of Web sites with accurate information were “infant cigarette smoking” (82% accurate), “infant sleep position” (74% accurate), and “infant sleep surface” (73% accurate). For each of the other 10 key phrase searches, less than 58% of the Web sites (range, 14%-58%) contained accurate information. The key phrases yielding the highest percentage of Web sites with inaccurate information were “pacifier infant” (14% accurate), “infant home monitors” (18% accurate), and “infant co-sleeping” (20% accurate).

They looked at 13 key elements relating to safe sleep

Sleep position- Back position only for all periods of sleep.
Side sleeping is not advised.
Sleep surface-Infant sleep surface Infants should sleep on a firm sleep surface.
No soft materials or objects- (ie, pillows, quilts, comforters) should be placed under infant.
A firm crib mattress, covered by a fitted sheet, is the only recommended sleeping surface.
Bedding- safe infant bedding No soft objects or loose bedding should be on or in bed.
Bumper pads should not be used.
Smoking- No smoking during pregnancy. Infant should not be exposed to second hand smoke.
Room sharing- The risk of SIDS is decreased if the infant sleeps in the same room as the parent.
Pacifier- Pacifiers have been shown to reduce the risk of SIDS. For breast-fed infant, delay until 1 month to ensure that breast-feeding is established.
Overheating- Infants should be lightly clothed for sleep. Infants should be dressed similar to how parent/guardian is dressed. Overbundling should be avoided; infant should not be hot to the touch.
Infant products SIDS products-Avoid products marketed to reduce the risk of SIDS. Do not use home monitors as a risk reduction method.
Bed sharing- Infants should always sleep alone on own sleep surface.

Keep in mind that the Internet has a lot of information that is outdated or just plain wrong. As a parent, you need to evaluate health information on the Internet, or anywhere else, with a sceptical and informed eye. Look for facts, not just opinions. We all have opinions on a subject and there is nothing wrong with expressing them, the problems begin when those opinions are presented as facts rather than being backed up with facts. Have they provided links to original sources? Have they referenced experts?

If something you read confuses you, or doesn't seem right, ask your health care provider for more information (although bear in mind they may not be completely up to date either! -but that's another issue). Double check, cross reference. Ask the admin of the site you are using, they should be able to give you further details. If they can't be wary. They may not know as much as they imply.

Here at Justice for Preston we are not experts, we have never claimed to be, but we are parents who are committed to safe sleep for our babies. Our research is on going and we are learning all the time. We will always pass that information on to you, because if the information about the dangers of bumpers had been more widely known Preston would still be here. We will always double check our information and will provide our sources so you can read and study further if you wish. Our aim is, and has always been to raise awareness of all issues that could affect your babies safety, especially those connected to safe sleep.

Monday 22 September 2014

Angelversary and Petition

Phew, it's been a very busy few weeks, and a roller coaster ride of emotions. We need a little time to catch our collective breath, but I thought I'd just drop by to let you know we got through the first anniversary of Preston's passing, difficult as it was, with a balloon release and quiet family BBQ.  And we hit our 10K target on our petition!!! How wonderful is that?


Justice for Preston Angelversary Balloon Release
We did it!!!

Monday 25 August 2014

'My baby was fine'



This has to be the reason for cot bumper use that we hate most 'Well, I've used them with all my kids and they are all fine' or 'My mum used bumpers with me and I'm still here'.
It's a tactless and insensitive thing to say to a family in grief, but it's also a deeply flawed assumption.

Preston's mum used cot bumpers with her older children. They were fine. Two out of three times she was lucky. In fact, as Preston passed away when he was nine months and eight days old, right up until nine months seven days Lisa could have said 'I've always used bumpers and mine are fine'.

Tragedy has a nasty habit of striking without warning. It can happen to anyone, at any time. Just because you've been ok so far doesn't give you an immunity.

Many parents use cot bumpers. They buy them because they believe they need them, or because they look nice and make the cot look cosy, but just because it's what has been done for years doesn't mean it has to continue. Common sense says we alter our habits in line with the latest safety advice.

They used to say lay babies to sleep on their stomachs.
Would you do that today?

Babies used to travel in cars without car seats, either held on an adult's lap or laying in a carry cot that may, or may not, have been strapped in place. Would you dream of doing that now?

Millions of babies slept on their stomachs and were fine but now we know it increases the risk of SIDS so we don't do it any more. We lay our babies on their backs to sleep because it is the safest thing to do.

Countless children travelled in cars without car seats, or even seat belts, and are still here to tell the tale. Myself included. Some of my own children, including Preston's Daddy, travelled as babies without car seats. Today that would be thought of as outrageous, but then it was generally accepted.

Safety advice improves. Opinions change because of it.

It's time for opinions on cot bumpers to change too. Babies have been dying for years because of them. The health authorities have been aware of this but the limited advice available hasn't been reaching parents. Manufacturers are aware of the deaths but they still continue to make them because profit comes first.

Cot bumpers have caused deaths through suffocation, strangulation, over heating, and rebreathing of Co2. Don't let your child become one of those statistics.

The law on infant car seats was changed because some babies tragically died in accidents. Most were fine but the law was changed to protect them all because no one knew which car would be in an accident and which wouldn't. It's the same with cot bumpers. Most babies will be fine, but you have no way of knowing when you lay your little one in his cot if tonight will be the night your world falls apart.

If this has helped you change your mind about using cot bumpers please sign Preston's petition. Lets take a stand and change the law on cot bumpers too.

http://epetitions.direct.gov.uk/petitions/54991

Saturday 16 August 2014

Safe Sleep Awards - Preston's Safe Sleep Super Stars








Through eleven months of campaigning for safe sleep and working hard every day to raise awareness on the dangers of cot bumpers, we have realised how few parents know the risks of having a cluttered cot. We have seen reputable companies insist on selling bumpers because 'parents want them' despite keeping those same parents in the dark about the true risks; and popular magazines and businesses which rely on parents and babies, persist in using unsafe images to promote their products.

It is rare we see a company take a stand for safe sleep by using only pictures of safe environments and practices in their advertising and on their website. We think those that do deserve recognition. We think they deserve applause.
We think they are Safe Sleep Super Stars.

If you know of a company that only uses safe images, or has dropped bumpers from their range (we live in hope), you can nominate them for our safe sleep award by messaging us on our facebook page, starting your message with SAFE SLEEP SUPER STAR, or leave a comment on this post.

http://epetitions.direct.gov.uk/petitions/54991

Thursday 14 August 2014

Why Justice for Preston?


Why Justice for Preston?
Preston and his family were let down by the system.

They were let down by an NHS which openly says on its website that 'Cot bumpers are not recommended because babies can overheat or get tangled in the fastenings.' (if you know where to look -it isn't with the SIDS/safe sleep advice) and yet doesn't inform many of its health visitors, doctors and midwives of this or train them to pass this message on.

They were let down by their local health authority. Preston's health visitor had seen his bumper only weeks before he died but didn't recognise the danger.

They were let down by the government, in particular the Department of Health, who are well aware of the existing research done by other countries to show that cot bumpers can, and do, take lives but they have never run a 'Bare is Best' campaign to make British parents aware of the dangers.

They were let down by the manufacturers who continue to make, and the stores who continue to sell, cot bumpers for profit knowing they are a risk to life. They were doubly let down by the insistence of these companies to promote bumpers, not just as decoration but as a safety item when they know the opposite is true.

Justice for Preston is not just a campaign title.
Justice for Preston is what he, and his family, deserve.

Help us get Justice for Preston by signing the petition. Give him a voice and help babies in the future.
http://epetitions.direct.gov.uk/petitions/54991

Wednesday 13 August 2014

WHAT DO YOU KNOW ABOUT COT BUMPERS?



My name is Preston I grew my angel wings on 11/09/2013 aged nine months 8 days. The cot bumper was tied on correctly and knotted tightly but it ripped off from the ties that remained on the cot still knotted.
But daddy found me with it wrapped around my neck twice. My passing was ruled as SUDS because although the coroner could prove the bumper was wrapped around my neck twice causing abrasions, he could not conclusively determine my cause of death. These facts below will tell you more about the dangers.


I'm raising awareness through my mummy and daddys brave decision to share my story and fight to get cot bumpers banned in the uk and have done so since just one week after I became an angel. My grandma and a friend are helping them too.

**COT BUMPERS **
** the SHOCKING truth!!**
We will keep sharing until everyone, right across the world, understands the risks. Every parent needs to know the dangers.

Cot bumpers pose a risk of strangulation and suffocation. They can cause overheating, a major contributor to cot death, and cut down the circulation of oxygen in the cot. Heres the advice and evidence http://www.parenting.com/article/sids-prevention. All questions should be answered here. READ and be informed.

As well as a list detailing the 27 deaths mentioned in the AAP report we have this.
We have been reluctant to post it as don't want to get accused of upsetting/scaring people, although we think its something people ought to see.

It makes for very distressing reading, have a hanky ready

** If you are convinced enough not to use a bumper then you might not need to look.**
Anyone who is still using a bumper I advise you do read. Then you know why we have to get them banned . If someone had been brave enough to share this then many babies would be here still. Here is a list of deaths by cot bumpers the ages of the babies and how it happened.

http://www.jpeds.com/article/S0022-3476(07)00363-0/fulltext#tbl1
Scroll down to results to see the list on the link above.

Sign the petition as many times as you like with your multiple email addresses.you must check your inbox after filling in your details and click the link within the confirmation email else your name won't be added.

*Click this link and sign
http://epetitions.direct.gov.uk/petitions/54991 *

Lets make this Stop !! You can help us make our government listern and help put lives before profit !!! America,Canada and Australia to name just a few are making all aware or banning cot bumpers the UK as usual are lagging behind. They stopped recording accidental deaths in 2002 so gather no evidence. Instead it takes grieving parents to speak out and warn all.

My mummy and daddy were not informed by any authority of the dangers of cot bumpers. They are raising awareness to all in loving memory of Me
Please help love Preston xxx

Tuesday 12 August 2014

Preston's Story


It was march 2012 when I found out I was pregnant with Preston. I had given birth 3 months earlier to Preston's sister so Preston was our surprise baby even though I was worried about coping with 2 babies so close in age there was no question that we were going to keep him. My pregnancy was surprisingly easy and the whole 9 months passed in what seemed like a blink of an eye. My due date 29th Nov came and went and 4 days later on 3rd Dec 2012 at 12pm came the contractions and 10 hours later at 10:03pm we welcomed Preston into the world. Like my pregnancy my labour was easy too not needing any pain relief, we were both doing well and were discharged that night. 
When we got home I couldn't stop looking at him, he was perfect in every way and I was scared to sleep in case anything happened to him. 2 days later he just wouldn't stop crying, I didn't know what was wrong. I tried everything but nothing helped. It then dawned on me that Preston was showing signs of colic, I didn't know what to do my other children never had it so all I could do was buy Dr browns bottles and buy all the colic medicines suitable for his age and hope it helped, it didn't. Sometimes we would be awake for 3 days straight, Preston only sleeping in the day and we couldn't sleep then because Preston's sister was up. We eventually started sleeping in shifts, I would sleep 9pm til 3am and Cuc 3am till 9am, it worked for us. We kept taking Preston to the doctors trying to get them to help him and eventually at 3 months old they prescribed him gaviscon and at 4 months old he was like a different baby, all smiles and only cried when he was tired. 
The next 5 months were filled with so much happiness, going out whenever we could and playing games and having time as a family. Our house was filled with so much laughter. In June we moved out of our little 1 bed flat that we were cramped in like sardines into a 3 bed house, it was a new start and Preston loved it, especially having his own room. Preston loved a lot of things but more than anything he loved his sleep always giving a big smile and a big wriggle to get comfy when he was put in his cot and was asleep within seconds, he was a very lazy baby. 3 months after we moved into our house 10th September 2013, it was like any other day. I don't remember much, the shock of what was to come messed my head up so much that a lot of my memories were wiped. I remember running the virus protection on the computer then playing on the floor with Preston, he became tired so we put him down for his nap around 2:30pm while I put potatoes in the oven for his tea and prepared the salad we would have with it. After an hour we went to get him up and spent time playing games. 5:30pm we had our tea, it would take Preston less than a minute to eat his favourite pudding, chocolate mousse but an hour to eat his dinner. Half past 6 came and Preston started getting upset so we knew he was tired so off to bed he went and that was the start of events that would change our lives forever.

Around 3am I heard Preston's toy car keys and a little moan and then silence, I thought he had stirred and gone back to sleep which was normal for him so off we went to sleep. The next day 11th September I remember being so annoyed we had someone coming out so we had to stay in and I wanted to go out and get some wallpaper. I went downstairs as normal, Cuc was up with Mari, I hadn't heard him get up, I asked if Preston was up he said 'not yet' and he went to get him. I sat on the sofa and heard the most horrible moan, we have 2 dogs and I thought it was them messing around so I told them to pack it in. Within an instant my heart dropped like deep down I knew, so I shouted 'what?' no answer 'what?' again no answer and I just ran up the stairs and found Cuc in Preston's door way cradling him and crying. I asked if I needed to ring an ambulance and Cuc choked 'yes' I ran downstairs grabbed the phone and dialled 999 screaming 'please help me, my baby's dead' I knew he gone, as parents there's something inside of us that just knows. After hours of screaming and crying we went to the hospital to identify Preston and that's when Cuc told me when he found Preston he had to unwrap his cot bumper from around his neck twice, he hadn't told me straight away because he felt I couldn't cope with it and he was right, I couldn't. 11th September is a day i'll never forget, its the day my heart broke into a thousand pieces and could never be fixed. 
We don't have a time of death so we don't know if when we heard Preston's toy keys was when he died, we don't know a lot of things but we do know this, this shouldn't be anybody's future. Preston wasn't the first and he wont be the last if we don't share this story so please share, it could save at least one family from this pain and could save their child from having their life cut short by a useless piece of fabric that does more harm than good. If we had known Preston would still be here. 
Lisa xx

Ban cot bumpers sign here
http://epetitions.direct.gov.uk/petitions/54991