My Name is Kylie and I #Blogitforbabies

I'm late to the party here, this week Save The Children together with the inspirational and colourful Annie from Mamasaurus has been running #blogitforbabies part of their Build it for Babies campaign. She has been travelling around the country, doing daft things, like running into the sea at Brighton! Now regular readers might twig why I have not blogged before now. The Born Too Soon: Global Action on Preterm Babies report was released on Wednesday afternoon, Save The Children are one of the key contributors to the report.

In terms of pre term babies Save the Children are committed to a number of initiatives, namely providing equitable access to:-

• provision of antenatal corticosteroids
• kangaroo mothercare
• neonatal resuscitation
• improved cord care
• breastfeeding support
• treatment of neonatal infections.

The specific aim of #blogitforbabies is to raise money to provide life saving equipment for a delivery room in a healthcare clinic in Bangladesh.

This is significant in terms of the report, there are 10 countris that account for over 60% of the world's preterm births, and Banglandesh is one of those countries.

Here is a list of what they want to buy, and many of these items directly relate to those goals of helping deliver preterm babies safely.

I am passionate about saving the lives of preterm babies from Bolton to Bangladesh and I hope you will join me in sparing a few pounds for this vital campaign.

So how do you give to this campaign?

A really simple way is by text.

Simply text 70070 with the code XVRL71 £1 to donate.

There are other ways too just visit the #blogitforbabies website.

My son was saved because of fantastic neonatal care, safe, sterile equipment, the latest research and medications. I want all babies, regardless of where they are born, to have these basics. And I think you do too.

Preventing Premature Birth - Help Tommy's

Thank you to everyone who read, tweeted and supported us yesterday as we launched the Born Too Soon: The Global Action Report on Preterm Birth. Don't forget the Linky is still live if you would like to link up a post about preterm birth, especially in the developing world. Our story was also featured on Impatient Optimists the blog of the Bill and Melinda Gates Foundation.

The Twitter Relay yesterday was really interesting, and I say this honestly, having stuck my nose in and out of the chat all day, that the UK leg at 3pm was amazing, so many people came and told their story, and we talked about some amazing topics like dealing with other people's stupid comments, and dealing with our grief. Kate from Kate on Thin Ice is the Queen of the twitter party and she was amazing, so thank you Kate.

The big thing that came out of the day was about prevention. Tommy's who hosted the UK leg of the party explained that they are getting there with some of the answers why premature birth happens but the real issue is funding. It seems such a shame when prematurity is such an expensive problem, with NICU stays costing anythng from £400 to £1000 a night, to invest money in prevention strategies sounds like good business practice to me.

What really came out to me from the report was that prematurity is everyone's responsibility and we can all play a role, whether it be volunteering, fundraising, blogging to raise awareness, there are many things we can do to help. The problem is big, but together we can make a difference.

It's our responsiblity as parents of premature babies, as mothers and fathers to make these tiny lives matter. Governments won't make it a priority until we tell them too.

In the meantime charities like Tommy's relay on us to raise money. There are so many things going on at the moment. Tommy's still have some places in the Royal Parks Half Marathon in October. If you would to support me in my 10k in London at the end of this month. (if you have a cure for asthma as its really affecting my training I would also like to hear from you!!!)

Thank you again for your support of me, and my blog, and please help me make these tiny lives matter.

Steroids - #Borntoosoon

This is my third and final post for today. In coming weeks there will probably be more that I'll write about in respect of Born Too Soon - The Global Action Report on Preterm Birth. This post I felt was important to publish today. 

Joseph having a break from CPAP - just a few days old breathing on his own

I am an asthmatic, and as such, corticosteroids have played a big part in my life, both inhaled and as tablets. What I was unaware of, until it happened to me, was that corticosteroids have an important role to play in preterm birth. 

When a woman may deliver early, in industrialised countries, she is usually given an injection of steroids. There are two injections given 12 hours or more apart. These injections mature the lungs of the neonate. I remember when Dr K came to see me to discuss my treatment plan, he said he would give me cortisone injections, and give me extra medications to slow the onset of eclampsia to optimise the steroids and give them time to work.

When Joseph was born, he was ventilated for 15 hours, then moved on to CPAP. Joseph did brilliantly with his breathing and made a full recovery with no lung problems. I think the steroids had a large part to play in that.

My feelings are backed up by the findings in Born Too Soon. It has been strongly recommended that the use of corticosteroids is promoted in developing countries, and it is thought that up to 400 000 tiny lives could be saved by the use of this medication.

The real beauty of this medication is its cost. Each shot is less than £1. The problem with the shots is that timing is crucial. The shots are given a minimum of 12 hours apart, and need to be given 12 hours before birth, optimally. Having trained staff on the ground to help assess when is optimal, and to give the shots is absolutely crucial.

I did a quick survey on my Facebook last night just asking for people's responses about steroids, and its clear they are universally given in the UK. Many people said they hurt. Others, like me, can't remember them hurting.

One thing is clear, that the well timed use of steroids can and does make a difference. Every baby #borntoosoon deserves that chance.

Kangaroo Mother Care #BornTooSoon

Unusually I am doing a couple of posts today, I am sure you will all forgive me for the amount of information I am putting on my blog. It's a big, important day.

When you are faced with a report as big and as comprehensive as Born Too Soon: The global action report on pre term birth it can be hard to know where to start. I was very fortunate and honoured to be invited to a press teleconference to discuss the report. One of the key things advocated in this report is Kangaroo Mother Care.

In the developing world, as I mentioned in the earlier post, when we talk about preterm birth we are often talking about babies born after 32 weeks gestation. Often, incubators are hard to come by, or are broken, or over subscribed, or even dirty. Did you know there is a free solution to an incubator for some preterm babies?

Kangaroo care is the art of placing a baby on the chest, usually of the mother. However if the mother is unavailable a father, a grandparent, a sibling or even a foster carer is a substitute. The act of kangaroo care helps to keep a baby's temperature regulated, it helps bolster the mother's milk supply, and it means the baby can feed on demand. No special equipment is required.

Now this seems so simple, but the message is not getting through in all countries. On the conference call there was a writer from Mexico saying that in their hospitals mothers are discouraged from touching their babies. It is clear that the message about kangaroo care needs to get through to where it matters.

Christopher Howson of the March of Dimes stated that its estimated kangaroo care could save 444 000 lives a year. Nearly half a million babies, by a simple, low cost solution.

Kangaroo care has huge benefits for the baby in terms of weight gain, temperature regulation, learning to breathe, controlling heart rate, but it has massive benefits for the parents too. Just look at these happy parents.

Kangaroo mother care can save lives. Help spread the word.

#BornTooSoon - Join Me

If you follow me on Twitter you will have seen my avatar and me tweeting with the tag #BornTooSoon. So what is this all about? Today Born Too Soon: The Global Action Report on Preterm Birth has been released, providing a clear breakdown country  by country of where pre term births happen. We are talking today about prevention, intervention and help for these parents and babies affected by pre-term birth. This is important. If you read no other post of mine ever, make it this one.

It is unthinkable. Premature birth is something that happens to other women, to other mothers. Not to me. We have no history of preterm birth. Heck, I was born at 42 weeks! But it did. It happened to me.

This is one of the first pictures I ever took of Joseph. That enormous piece of kit is a CPAP machine, continuous positive airway pressure. He is actually breathing for himself, that equipment provides a puff of air that keeps his airway open. Born at 27 weeks, due to pre eclampsia, he is one of the many babys born too soon each year.

I blog about premature babies because I am lucky. So lucky. If I had been in Sub-Saharan Africa, in Bangladesh, in Indonesia, my life may have been saved, but my baby would not have stood a chance. And that is not right. It isn't right, and I feel as guilty as hell that just because I had the good fortune to be born and raised in a first world country, I am alive, and have a beautiful, well toddler. Joseph was born in a clean hospital, with a massive team of doctors and nurses. Not every baby has this luxury. And it shouldn't be a luxury. Every child matters.

I have never read a WHO report before and wasn't clear on what to expect. #BorntoSoon presents a lot of data and research, but it also has a lot of stories, it's heartbreaking to read, and inspiring too. If we care about babies, all the babies of the world, then read it we must. 

"Inequalities in survival rates around the world are
stark: half of the babies born at 24 weeks (4 months
early) survive in high-income countries, but in lowincome settings, half the babies born at 32 weeks (two months early) continue to die due to a lack of feasible, cost-effective care, such as warmth, breastfeeding support, and basic care for infections and breathing
difficulties."

So today we are talking about preterm birth, what can be done?

We have to get better at talking about risk and managing that risk on a global scale. There are things we do to our bodies that put us at risk of preterm birth. The weird thing about it is that lots of women do these things and have fat term babies, we can't narrow down who will have a premature baby, but it is clear that there are things that put us at risk and we need to talk about risk factors without condemnation and criticism.

There are treatments and tests to help assess risk and we need these to be more freely available. We need staff with expertise and experience to be at the coal face, assessing risk, and preventing pre-term birth. We need well educated mums to be who know the signs and symptoms and importantly, know what to do, and are confident in self advocacy. We need to empower women.

That's why I work closely with Tommys. Yes they are UK based but the research they fund will and can help mothers in the developing world. I do think treatment and equipment are important too, and clearly experienced staff members on the ground, but we need to reduce the number of pre-term births annually, and that's a massive challenge.

Overall however, us in developed countries need to reach out to our sisters. We need to support charities who are working to address this awful imbalance, we need our voices to be heard.  Join me.

Please link up your posts about pre term birth here.
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Milestones and Millstones

Yesterday on the Britmums facebook page there was a suggestion that we blog about milestones. I am very passionate about this topic! 

When Joseph was about to be discharged from hospital, one of the nurses said, almost as a throwaway line "don't worry too much about milestones and just add a few months to what the Health Visitor expects Joseph to be doing" I had no idea how much I would hang on to those words.

For any new mum, a baby comes with its own anxieties. "Should they be doing this by now?". For the mum of a premature baby this is amplified many times over. In our case Joseph was very slow to hit his milestones even taking into account his corrected age, that is from when he should have been born, not his actual birthdate.

I would try not to worry, but often I'd fail miserably. Should he be rolling over by now? Sitting? Crawling? I slowly realised that Joseph was on his own timetable. Joseph didn't sit until 12 months actual age, crawling came much later, and walking later still. I learnt not to look at charts, or to pay much attention to the health visitor.

What I quickly established was that Joseph would not practice anything. This is him lifting his head for one of the first times, and see he is right up on his hand! But crawling was another 6 months away, even though he looks like he's about to take off!

What was really interesting is that with speech he's been pretty much at actual age with little delay, ok, on the just acceptable side of actual but that's ok! I have had a number of heated discussions with consultants and health visitors concerned about sitting, weightbearing and walking. It's been hard at times to just relax and believe in Joseph.

I think its very easy to get caught up in milestones and worry, but sometimes you just need to take a step back and enjoy the moment!

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Today I have posted over on Wriggly Rascals about my experience bringing my premature baby home.I am sure regular readers will be aware that I really struggled at first when we came home and it took a long time for me to "get into my stride" as a mum.  I know a lot of you will have experience of this. Pop on over and help a mother who is struggling at the moment.

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In my news update last week I shared about little Luna Bliss, the daughter of Inspiral Carpets' Clint Boon . His son Hector has had all his hair cut off to raise money for the Royal Manchester Children's Hospital. He has raised over £11 000 so far. If you want to support Hector you can do so here.

Angel Faces Outer Sparkle, based in Bury, are selling beautiful handcrafted necklaces with all proceeds going to Hector's fund. I have just received mine and it's beautiful!I won't tell you the price, but you will be pleasantly surprised.

Welcome to NICU - Advice for the New Parents

I've been thinking of this post for quite a while ever since the very lovely Katherine from Mummy Pinkwellies told me she first saw my blog in NICU at Littlebit's cotside. Perhaps you have found my blog the same way. 

Dear New Mum and Dad,

Congratulations on the birth of your baby (or babies). It feels strange doesn't it? Perhaps you don't feel at the moment there is much to be congratulated for, but in time you will be grateful that it was said.

How are you feeling today? Elated? Terrified? Sick? Happy? Joyful? Confused? All of the above all at once? Completely normal. I remember when my son was born, at 27 weeks, I felt everything in a rush all at the same time, it was so hard to make sense of it all. I felt so overjoyed I was finally a mother, immense guilt that my baby was so small and then so poorly. It just seemed a huge mess.

How are you finding all the information? Everyone deals with it differently. For some parents, knowing all the numbers, all the medications, the exact medical information for their baby is important, for others, just a broad overview of what is happening. There is no right or wrong. Once you have found your level that you are comfortable with, let the staff know. It will help them know how much to tell you and how to present it.

How are you finding your time on the unit? There is no right or wrong here either. Some parents spend every moment by their baby's cotside. If your baby is very small and very early and your looking at quite a long stay, you might find you need time away, and that's ok too. How you manage your baby's time on the unit is very individual. Don't feel you need to be there all the time, it is ok to do other things, to have time away.

Have you got much support? I found that most of my friends didn't really know how to speak to me. I think they felt frightened too and weren't sure how to help. I found it hard too, explaining NICU to someone who hasn't been there is really hard, it's a completely different world isn't it? There is loads of support out there, but sometimes you need to look for it. There are formal groups through Bliss and maybe your hospital.


Do you find you have enough information? It's hard to find that balance between having enough information and having too much. Tommy's the Baby Charity have a brilliant booklet called Having a Premature Baby, I highly recommend it. Bliss have literature too.

When I was going through NICU with my son, I wanted someone to tell me it could all turn out ok for us, not that it would, as no one could tell me that. My son is now almost 3. He is happy, and healthy, and meeting his milestones. He loves dinosaurs and football, the colour pink, watching the Gruffalo on television and playing with cars. He's turned out just fine.

My only advice for you is this: Believe in your baby, don't get caught in the guilt trap, and take each day as it comes.

What would you say to a new NICU parent?