New Magazine Column

Some of you may remember that 3 months or so ago I wrote an article for the Little Bliss magazine. The article was a submission for the Dad's Corner section of the magazine. I am now pleased to say that Bliss has asked me to be the regular author of that column! I'm delighted to be able to contribute to the magazine and hopefully to general awareness about neonatal issues, particularly those affecting fathers. The column is normally written as a question and answer format. If you have any ideas for future columns do let me know. In the meantime, here's the previous article...

A. My baby is about to be transferred. We have just started to feel as if we know our way around our current unit. What changes can we expect and what can we do to cope better?

Q. Although there are many reasons for transfers, I think a transfer is bound to be hard whatever the reason, but particularly if it is a transfer that you don't want or feel you don't need. We found it helped though (admittedly in our case after the event!) to understand why it is that your baby is being transferred. There is a national network of neonatal units for example and the aim is to get you back to your home network if at all possible. There are also different levels of care provided by hospitals and again, the system tries to get you to the most appropriate level.

Whatever the reason, it is hard to move from one place where despite all the upheaval, stress and uncertainty, you are starting to feel at home, to a new unfamiliar environment. You are already emotional from the premature birth of your baby, are starting to understand the alarms, monitors and recognise the staff, and now it feels as if you comfort blanket is going to be ripped away from you.

It is important therefore to try and understand what to expect in the new hospital, in particular, the differences between where you are now and where you are going. Even the smallest differences (from the point of view of staff) can be a big deal when you have everything else to cope with (just where do you buy preemie size nappies from if you suddenly have to provide your own?), so try to find out about parking, visiting hours, ward round hours, facilities for parents, phone numbers etc ahead of time. If at all practical with doing a day job, caring for your baby and any siblings, your partner, NICU visits and everything else, a visit ahead of time may be a good idea to familiarise yourself with the new surroundings and get to know some of the staff.
Speaking to staff in the current unit should be a good source of information, both in terms of likely dates for a transfer but also information about your new unit.

Finally, although the fear of the unknown may mean a transfer is stressful, in many cases it is a way of getting the baby the help it needs or is a milestone on their way home. We were told that going from level 3 to level 2 units where the level of care is reduced often results in quicker progress and sure enough our son was quickly breathing unaided. There is light at the end of the tunnel.

Good luck!

[Little Bliss, Spring 2010]

A reason for hope

As I wrote here back in November last year, the 3 months when Eoin was in hospital were incredibly tough. I'll never forget the moment when a lifeless tiny grey lump fell onto the hospital bed. He was immediately whisked away by the NICU crash team (they had less than 20 minutes notice that a 26 weeker was on the way) with a GC score of just 3. He was incredibly poorly and it was 6 hours before we were even allowed to see him. Much of that day is now blanked forever. He was on a ventilator but I have no memory of seeing that. I remember going home and telling Eoin's siblings that he had been born. I have no idea when I went back to the hospital, who with and how long for. What followed was 3 months of daily commutes to the hospital. Bradys and desats became routine, the apneoa alarm going off commonplace and sleep something other people did!

This post though isn't intended to dwell on the past. Last week, and two days after I got back from Paris, Eoin was 3 years old. This is him:

Cutie, isn't he?! Not when he's fighting with his brother and sister he's not! The point though, is that despite everything we've been through, we have been incredibly lucky and have a 3 year old little boy to show for it. He had the terrible twos worse than his brother and sister. He's a tiny little fella (he's wearing some clothes that his brother wore at 12 months!). Overall though, he's doing pretty good considering the start he had in life. We know not all outcomes are as good as ours was (which is why we continue to raise awareness of neonatal issues) but hopefully this story will give hope to families out there who are going through something of what we experienced. It is hard not to, but don't dwell on what might have been, but thrive on what is.

Don't forget to check out my brand new blog Kill the Dragon!!

X marks the spot. Pt IV.

Finally, we reach the Labour party. As for the Conservatives previously, I should declare previous interactions with the Labour Party, having met the Health Minister Ann Keen MP and also attended a meeting of the Prime Ministers Strategy group.

That said, I received nothing from my local Labour candidate. I also contacted Ann Keen. I initially received an automated response requiring my full contact details etc. I then got another one that informed me

Where a reply is appropriate we aim to send one within 20 working days.

I received nothing - says it all, doesn't it?! Then, on 14 April (a full month after my email) I received a response from the Dept. Health. Helpfully, this response included the sentence

As you may know, the Department of Health is part of the Civil Service and does not represent any political party.

For information on the future policies of a party, you may wish to contact the party concerned.

Well that's useful - I thought I had done! So, no response from the Labour Party then. For what it's worth, the DoH response informed me that the Neonatal Taskforce has recently published its findings, and also pointed that that the BAPM (British Association for Perinatal Medicine) standards are recommendations not mandatory. So that's a get out of jail free card then!
Very disappointing.
So, what do we conclude from the responses received? They can be summarised as follows...

Green Party
Responded
Committed to 1:1 Care
Committed to better support for families

Liberal Democrats
Responded
Implied support for all of Bliss' manifesto points
Have signed up to support Bliss Manifesto

Conservatives
Responded
Previous good communication with party
No specific commitments

Labour
Didn't respond
Previous good communication with party
No specific commitments
Have signed up to support Bliss Manifesto

At the end of the day, there are many issues that you have to consider when deciding where to put your 'X'. Based on this (admittedly limited) survey however, your choices may be slightly more limited now...

Finally, a reminder that you can contact you local candidates to get their views on the Bliss Manifesto here.

X marks the spot. Pt III.

So, on to the Conservatives. I received a letter from our sitting MP, Sir Alan Haselhurst. Straight off, I should say that Sir Alan has been a great supporter of us since before our son came out of home, contacting various MPs and senior NHS staff on behalf and attending both the Bliss events at the House of Commons that we have attended. His response to my email was as follows (again, edited for brevity by myself)...

• To improve neonatal care the Conservatives will make sure that spending on maternity services keeps pace with birth rate
• They will provide mothers with more information on the performance of maternity care providers
• Tariff payments (funding to hospitals) will be based on performance, including reduction in perinatal mortality and mothers' positive experiences
• Realistically Sir Alan recognised that he cannot pledge to support all causes due to the current budget deficit (but stated he would do his best on this particular cause)

So what is to be made of this? From a personal point of view I accept his pledge to continue to support neonatal care as I have observed in the past. In terms of specifics however, I am not sure that the points made will be that helpful. Firstly, keeping pace with the birth rate surely maintains the status quo (a charge I also levelled at the Liberals here), which as we all know is currently not good enough. Further, as the rate of premature births increases, funding based on birth rate will actually result in a drop in real terms in funding for neonatal care. In addition, whilst funding based on a reduction in mortality on the face of it sounds like a good thing, I wonder whether this may penalise those specialist units developing pioneering treatments on the very smallest or sickest of babies.

Coming up, the Labour party...

X marks the spot. Pt two and a half

Not quite the next candidate reply (I'll hopefully post that tomorrow), but a plea for support. In the last few days before election day, please help Bliss by getting your candidates to pledge support for the Bliss Baby Manifesto. In particular, By 2020 we want to see:

• One to one nursing for all babies in intensive care
• Access to round the clock specialist transport services in all areas
• Better support for the families of special care babies

Please sign up here.

X marks the spot. Pt II.

So, the Liberal Democrats achieved the largest change in poll rating in UK polling history, and Gord' and Cam went from agreeing with Nick to agreeing with each other and opposing Nick. But what would have happened if neonatal services got more coverage in the election? As I explained in the previous blog entry, I have written to several representatives of the political parties both nationally and locally to find out. This time, the response of the Liberal Democrats...

• The party believes in the need to safeguard NHS services and especially the specialist services such as neo natal care, which are at greater threat of cuts / reduction in services.
  
• In addition to local services, the party also recognises the need for regional/ national centres of excellence to provide care for the sickest babies.
• My local candidate stated that he strongly supported the very simple aims of Bliss and would campaign in Parliament to promote their views.

So, a less full response than the Greens, but this was a local response rather than national (Note: Nick Clegg also mentioned neonatal care in the first televised debate). Despite the shorter response however, it is interesting to see the mention of specialist centres. It feels like maintenance of the status quo rather than improvement and again no mention of funding. It is good to see promotion of Bliss within Parliament however.

Survival Rates

There's an interesting piece of research just been published in the Archives of Disease in Childhood and reported on the BBC website looking at survival rates of very preemie babies. The research indicates that despite greater medical intervention and slightly longer survival time, the actual survival rates for babies born before 24 weeks has stayed essentially the same. For these pre-24 weekers, 20% survive, often with disabilities, and this despite increased levels of resuscitation and other interventions. This is in contrast to those born at 24 and 25 weeks where survival rates are continuing to increase.

Clearly this findings are important and interesting from a medical point of view. Equally they will no doubt be used in the abortion/pro-life politicking debate, the gestation times discussed coming as they do right around the abortion limit. Does this mean that we have reached the limit of what medicine can do for the most premature babies? That their organs simply cannot cope despite the very best medical care? Possibly. But my view is that such sweeping statements are dangerous certainly for policy making. As Andy Cole, Chief Executive of Bliss said in response to the work,

it is always important that these babies' treatment and care options are considered on an individual basis

In our experience of having a 26 weeker, we certainly had the ups and downs in his first few months but ultimately we have been incredibly lucky and he is surpassing our expectations (and moved into his own bed at the weekend!). At the same time, we saw the other side when parents of longer gestation (and even term) babies experienced complications and difficulties they never dreamt would affect their babies. They are truly individual little beings!

Published!

Quick note to say that I am delighted to say I made the print version of Little Bliss magazine this month. Those of you who regularly read this blog will know about a post I did (here) regarding transfers a while ago. For those who have found me after the Little Bliss article, welcome!

X marks the spot

So, the election campaign is in full swing. Politicians are wearing out their soles pounding pavements and trees are being cut down for leaflet after leaflet to be printed, put through your letter box and binned!

So apart from the fact that Gordon "Agrees with Nick", what else do we know? In order to determine the party line on neonatal care I wrote to the parties several weeks ago (finger on the pulse - I sensed an election was in the offing!) to ask. I wrote to the Health Secretary and Shadow Health Secretaries for the Conservative and Liberal Democrat parties, in addition to the Green Party national HQ. I also contacted my local candidates for Labour, Conservative and Liberal Democrat (Green hadn't declared theirs at the time). All contact was by email, with the same email sent to all contacts. So, what did they say? First the Greens...

I received a reply from the Green Party Leadership Office. This is an edited (for length, not meaning) version of that reply...

• The Green Party believes that a comprehensive health service, free at the point of need and funded through taxation, is a fundamental citizen’s right.
  
• They fully support the NHS Neonatal Taskforce report Toolkit for High Quality Neonatal Services published last November.
  
• The Green party would provide the required investment to make up the shortfall of over 2700 nurses and 300 supporting therapists referred to in a recent Bliss newsletter (Ed: Annual Report?) and would make 1:1 nursing a priority for the next decade.
• Also keen to support greater care and support for the mother post-natally.
• The Green Party would also ensure neonatal capacity in the UK was improved to ensure that units were no longer crowded and overstretched and were not endangering the lives of babies.

So, all sounds pretty good doesn't it? At the risk of sounding like a politician, I guess one point is around funding. Ok, so they mention funding through taxation, but there isn't anything else is there?! It is great to see that they have clearly taken the time to read the Taskforce output and have taken onboard the key demands with respect to nursing levels and 1:1 nursing, but I guess the big question is how to pay for it?

Next time, the Liberal Democrats...

New Preemie Book

It's been a while since I blogged about preemie issues rather than the obsession of getting two bike wheels to go around as far as possible! My interest has in no way diminished, but my current focus clearly is about the ride and getting as much money as possible for Bliss.

That said, I do have one or two posts in the background - more of which later. In the meantime I am pleased to announce the publication of a new book which may be of interest. Written by Deb and Nicole, also behind the Preemie World site and blog, the book (as described on their website) is...

...taking a different view on supporting families who have just been exposed to the NICU. [The book takes] the preemie books of old to an all new level. Clear-spoken and from the heart, it’s a parent-to-parent must-have guide with tons of tips along the way. Conn and Discenza have created the essential hand-book to surviving the NICU.

The book can be purchased from the PreemieWorld website

Help Wanted - Update

A while ago I posted about a couple of studies looking for help from parents of prems (and we all know how to determine if that's you!)

I have now been contacted again by Wendy Moncur at the University of Aberdeen who is running a study looking into communication of baby updates with friends and family:

What is this survey about?
When a baby is unwell in hospital, the right kind of support from close friends and family can reduce parents’ stress levels. We are developing a news system which allows parents to send personalised updates about a baby to their friends and relatives automatically by email or text message, to encourage friends and relatives to give support to the parents.
To get it right, we need the views of mums and dads like you. We want to know the kinds of messages that you think are most suitable to give to different people.

The study can be accessed here: http://www.abdn.ac.uk/websurveys/nicu/

Thank you!

Transfers

At the end of October, I wrote a brief entry about the Bliss Baby Charter, and said I'd return to it at a later date. Well just over 3 months after that, I guess this is a 'later date'!

For me, one of the burning issues in neonatal care is transfers, which is covered in Charter 3: Babies receive the nationally recommended level of specialist care in the nearest specialist unit to the baby's family home.

Within this, the charter requires trained specialist staff in multidisciplinary teams, near to home and operating consistently across a network. This isn't really too much to ask for is it? After all, it is pretty much what adults would also expect when they have a need for specialist medical care.

It is remarkable however, how often these objectives are not met. In particular, the provision of care 'near to home' is difficult for people to receive. There are many reasons why people are transferred, some quite legitimate, for example, transfers to a hospital that can provide higher levels of care, care for very premature babies or provide surgery.

Where things start to become unacceptable though is where it is purely a capacity issue and babies are transferred often many many miles from home simply because there is no cot closer to home. In a recent poll on the Bliss website (admittedly, this wasn't a scientifically rigorous study), nearly 20% of respondents were transferred between 50 and 100 miles, with more than 10% transferred over 100 miles. Some babies were transferred 140 milesor more, in one case 146 miles from Aberdeen to Glasgow, for a stay of 25 weeks! Even shorter transfers however can be traumatic, when it means a transfer further from home. Clearly the care of the preemie is paramount, and so where medical need dictates, transfers are fine. In other cases though, they risk:

• Stress and other impact on the baby during transfer and change of surroundings
• Transfer to a hospital where medical staff do not know the baby and its history as well
• Less frequent visits by parents due to extra distance and less time at the cot-side
  
• Less frequent visits by siblings
• Less frequent visits by other friends and family
• Stress to parents due to extra travel, unfamiliarity, less time with baby
  
• Increased time that parents and other children are apart during visits to visit the preemie
• Increased travel for already exhausted parents
• Increased travel costs
• Increased food costs, or poorer nutrition
  
• Reduced opportunity to establish breastfeeding
• Frustration with medical staff who don't know the background of the baby
• The risk of subsequent out patient treatment being either at the same far flung hospital, split amongst several hospitals or simply lost 'between the cracks'
• A new unit to become familiar with, and a change of routine

All this in what increasingly is being described as 'family centred care'! It often makes it worse when staff who have clearly seen it all before just don't see what the big deal is - to them it is just another day. There is also a point here about the consistent operation across networks. We know of families who managed to avoid transfer, and indeed there were respondents to the poll on the Bliss website who were able to beat the system. This isn't sour grapes and I'm genuinely pleased that people are able to stand up to the medical institution and overturn decisions, with babies that were on their way out being able to stay. There is also often poor communication on transfers, in terms of why they need to happen, how they will happen and also when they are likely to happen. Parents are often left feeling that they have no say in the decision. Ok, realistically they probably don't, but there is little discussion or communication with parents.

Finally, what must be the most stressful type of transfer is the multiple transfer, either being passed from pillar to post (and often back to the same post or another one!) or where multiple births are split up and sent their separate ways, often with mums still in-patients in hospital #1.

Clearly there are instances when transfers are absolutely necessary and all parents who are able to bring their baby home are enormously grateful, regardless of the distances travelled. But it would be good if transfers could be better planned, along the lines of the Bliss guidelines. Notably:

• Better communication with parents about the reasons for a transfer
• Transfers only when absolutely necessary for medical reasons
• Recognition that within family centred care, the parents and siblings should also be considered in addition to the non-medical impact on the baby (ie stress)
• Better communication with parents about the new hospital - car parking, visiting hours, NICU protocol (should you bring your own nappies, is there somewhere for valuables, when are ward rounds etc)
• Recognition that whilst networks are a good idea in general, there are instance where people living on the boundaries will be transferred to a hospital further from home even if transferred back into their own network (ok, I sneaked that in from personal experience, but we can't be the only ones that happened to)
  

Prevention and cause

Recent news reports stories have reported on both the causes and prevention of prematurity.

Firstly, the causes. The causes of prematurity are not well understood with multiple factors thought responsible. For example this paper suggested infection, vascular disease, maternal BMI, cervical length and previous history of premature births could all be risk factors. Equally, another paper recently reported no evidence for the efficacy of antibiotics as preventatives for premature birth. As reported by the BBC news, and a host of other news sources, however, recent work has strengthened the case for infection playing a vital role in prematurity. Following on from research undertaken by Imperial College London last year which found a link between a protein that causes inflammation in response to infection and prematurity, a group at the National Institute of Health in the US has now linked a particular gene to the story too. After studying the genes of woman and babies in Chile, the researchers have identified genes that are found in proportionately higher numbers in women and babies experiencing premature birth. The genes are linked to inflammation as a result of infection and from a evolutionary point of view are thought to be involved in life preservation (particularly from the point of view of the mother) when infection is present. The next step is to now develop tests to identify the presence of the gene (or protein) in order to pre-empt the inset of premature birth. Further down the line, perhaps even intervention to prevent the inflammatory response could lead to reduction in the likelihood of premature birth.

Closer to coming to fruition as a preventative approach, maybe, researchers at Yale have also recently reported that the use of progesterone can reduce the likelihood of premature birth.Working on the hypothesis that many premature births are a result of premature rupture of the foetal membranes, the researchers have determined that progestrone is able to reduce the rupture and thus potentially could reduce premature birth. Whilst still being explored in the lab, this is nevertheless an interesting piece of research.

Another recent report on work also funded by the NIH reported that Vitamin D could help to reduce the occurence of premature births. The study investigated the rate of early births between a high vitamin D dose group and a control group taking more like the current recommended dose of vitamin D. Premature births in the high vitamin D group were less than half that of the control group.

Please note: This blog does not suggest all expectant mothers should rush out and consume large quantities of vitamin D - please see your doctor!

Reality check

It's time for a reality check. Everyone who has experienced life in the NICU with a premature baby knows about the frustrations...insufficient staff...transfers miles from home...concerns over the state of the equipment...getting the correct medication at the correct time...I needn't go on. It all pales into insignificance though, when premature baby care in the developing world is considered. Currently in Haiti for example (as of Jan 17th), there appeared to be one hospital only. Setup by Israeli aid, the hospital does include incubators for preemies, but clearly the facilities are limited. [Update: 20th Jan. Haaretz.com is reporting the delivery of a preemie in Haiti by Israeli medical staff, in addition to the treatment of another sick baby]

The March of Dimes has donated $100 000 to UNICEF for mothers and babies in Haiti.



Even without terrible earthquakes, the developing world is a bad place to be a preemie. A recent report by the March of Dimes and WHO estimates that 13 million premature babies are born each year. An astonishing 11 million of them in Asia and Africa - compared to around half a million in each of the USA (incl. Canada) and Europe. Globally, the rate of premature births is increasing (reasons are not entirely clear, but include assisted reproduction, increased age of mothers, earlier Caesarians and in Africa, the lack of drugs to treat infection during pregnancy and drugs to prolong pregnancies), and starts at a higher rate in Africa (approx. 12% of all births, compared with 6% in Europe).

Perhaps not surprisingly, in addition to the higher rate of premature births, survival rates are lower in developing countries, partly due to the greater prevalence in general of diseases such as malaria, but also due to the lower levels of care available. For example, as reported in the East African paper, whilst babies born at 32 weeks in developed countries stand almost as good a chance as term babies of survival, those in the developing world stand little chance of survival.

As I have said many times on this blog, we are incredibly lucky. We had a premature baby born in the UK, endured a 3 month 'nightmare' in the NICU of two well equipped (by global standards) hospitals and brought home our little fella close to his due date. He will always be a preemie, but on the whole, he is now a happy little 2 year old boy and gradually is leaving consultants behind. I know others aren't so lucky and you truly have my admiration for how you continue to cope. In the grand scheme of things though, the NHS or the US health system doesn't do bad.

Interesting website

Just wanted to pass on details of a website I've come across. PreemieWorld is run by two mothers who have a passion for supporting parents through the NICU and beyond. In addition to blogs, the website contains a store from which to buy various thermometers (eg for the forehead, bath, bedroom etc), immunization charts and others. The most recent addition is a book (The Preemie Parent’s Survival Guide to the NICU: How to Maintain Your Sanity & Create a New Normal) as well as a DVD called Little Man about the son of one of the site's owners, Nicole. Not sure if the DVD is available in UK compatible format, but thought I'd pass on the details...

You know...pt.2.

Well, after the tremendous response I got from my original post on the Bliss website, here is part II of my "You know you're the parent of a preemie if..." posts. The original is here.

So, without, further ado, you know you're the parent of a preemie if...

1. ...you're concerned that a large poo will result in a loss in weight that night
2. ..you can't remember what day of the week it is, but you know exactly how many days old your baby is
3. ...the doll carried by a little girl is larger than your baby
4. ...you add olive oil or double cream to every meal
5. ...the ambulance officers and first year med students ask you if you're medically trained because all these medical terms just roll off your tongue when describing your child's medical history
6. ...the first and last thing you do in the day is ring the hospital
7. ...you know the number of the unit off by heart
8. ...you find yourself looking at other little babies thinking yours was never that small, was it??
9. ...you look back at their photos and still cry over a year down the line
10. ...you have an answer to everything that people will ask
11. ...you go out with the rain cover on even when its not raining
12. ...you start using their corrected age to stop people asking questions,
13. ...you hear beeping even when you're asleep
14. ...you have read a lifetime of magazines in a matter of weeks
15. ...you get overly excited about weigh ins
16. ...the unit is on your christmas card list
17. ...you talk about poo more than normal
18. ...the staff phone you worried if you've not called at your usual time
19. ...a month after discharge you're still changing your baby from the side
20. ...you can tolerate the breast pump on the highest setting and did away with the hand pump in a matter of weeks after getting RSI and breaking the first one from over use
21. ...sats of 92 are considered excellent, despite what nurses at Paed wards think
22. ...the names and phone numbers of all the agencies involved are typed up and taped to the kitchen boiler for all those phone calls
23. ...you have to get a trolley in Boots to pick up prescriptions
24. ...every achievement your preemie makes is so much more precious, you celebrate them breathing independently, eating lumps and learning to sign
25. ...you take a vomit bowl everywhere you go cos reflux hounds you!!!!
26. ...you correct the new resident's medical update at the discharge meeting
27. ...your baby's red book notes section is full up
28. ...you actually envy mothers with stories of big babies and resulting tears!
29. ...you have spent your own money on home alarms you don't actually need because you can't imagine your baby "unplugged"
30. ....the first thing you say to a visitor to your house is not "would you like a coffee" but instead is "please wash your hands, you're not sick are you?"
31. ...the space under your stairs is not filled with shoes and a hoover but oxygen cylinders.
32. ...you enquire about your friend's/children's health, not to be polite, but to double check if you should make plans to meet up
33. ...somebody tells you that the cousin of the wife of his brother also had a premature baby who is now 2 metres tall, has got 3 degrees and is the president of America.
34. ...you have their drugs chart pinned to the front of the fridge so you know what's left to give in the next 24 hours

And finally...

You know you are the parent of a preemie because all their achievements mean more

Thanks a million everyone.

Join my Experiment!

Tonight I started an experiment that may work or may not!

We've all seen the stories. The man who sold his whole life online, the guy who sold advertising for one million pixels at a dollar a pop, the best job in the world, the so-called 419 scams trying to get you to help shift money out of Nigeria in return for a healthy cut, the Facebook campaigns that resulted in the UK Christmas #1, increased software sales, and changes in the formulation of a soap.

Wouldn't it be great if the same distribution and audience potential of the internet (estimated at just shy of 2 billion users) could be used to harness something really beneficial?

I have started emailing the following email to people I know and asking them to pass on the message and to sponsor me. As I said, it may not work, but even a few more quid would be great! If you're reading this and haven't received an email, do feel free to copy and paste the following message and pass it on. Thanks!

Hi,

This is an experiment! It may not work, it may be a phenomenal success. Either way, at least I have tried and it will be interesting to find out!

We have all read the mountains of spam that people receive asking for help getting 15 million dollars out of Nigeria or advertising Russian wives.

Well I want to see if email can be used for something really beneficial.

My son was born nearly 3 years ago, 3 months premature. He nearly didn't make it, suffered many setbacks along the way but finally came home from hospital after 3 months in intensive and special care. This was an incredibly difficult time not only for my son but the rest of the family too, and since then we have been determined to both raise awareness of the issues affecting premature babies and their families and also raise money for Bliss, the UK premature baby charity.

To this end, in June 2010 I am setting off to cycle from Cambridge to Paris in aid of Bliss. I am aiming to raise at least two thousand pounds, but am hoping to raise an awful lot more than that. And that's where you come in! There are many examples of the huge reach of the internet being used to sell bizarre things on eBay, shape political opinion or even determine the Christmas number 1! All I'm looking for is a donation from lots of people to take me above and beyond my two thousand pounds limit. If 10 people each forward this to 10 people, and each of those forward it to a further 10 people, all of whom donate a tenner, that's ten thousand pounds right there for Bliss to help future premature babies! Imagine the possibilities!

So, how can you help? It would be fantastic if you could make a donation, via my Just Giving website (http://www.justgiving.com/NBailey). Then, please forward this to anyone who may be able to help (the more the better!).

If you are reading this and have no idea who I am, then it is showing that this is actually working, so please do keep it going.

How much good is it possible to do using the power of the internet?

With heartfelt thanks,

Nigel Bailey
January 2010

Please visit my just giving site at http://www.justgiving.com/NBailey
Follow my progress at http://preemieblog.blogspot.com/
Learn more about Bliss at http://www.bliss.org.uk

You know you're the parent of a preemie if...

Well if you don't laugh you'll cry! As stressful as it is being the parent of a preemie, there's always something to laugh at isn't there? Happy Christmas everyone!

You know you're the parent of a preemie if...

1. ...you have started using your own corrected age to make yourself a little bit younger
2. ...you're on first name terms with all the triage staff at all the local and regional children's A&E's and clinics
3. ...you're still sterilizing everything that goes into your child's mouth after 12 months corrected
4. ...your smoke alarm battery gets low and you spend ages checking if the apnea alarm is working first
5. ...your friends look on aghast as you grab a child who has gone blue, clear their airways, use drugs, check monitors, check child is now okay and then carry on drinking tea and chatting as normal
6. You know your older child is a preemie when your younger one is born healthy at term but gets mild jaundice, and your husband asks the nurse if he's had his first blood transfusion yet
7. ...your 3 and a half year old can fit in to 0-3 month shorts
8. ...your husband begins to need the sound of the electronic breast pump to fall off to sleep
9. ...their first sets of babygros and cardigans are even too small for an average size baby doll bought in Toys 'r' Us
10. ...you begin to think that there is a silver lining to prematurity when you tot up the amount of money saved on formula milk and vitamins due to you getting them on prescription
11. ...you speak a strange language that other parents at the local playgroup do not understand - CPAP, de-sats, hypo-tonic, NG feds, apneas, cynosis, RDS, bilrubin levels, CDC......
12. ...you do a happy dance around clinic every time your baby has gained a gram
13. ...you ring the doctors with a full list of symptoms and possible causes
    
14. ...your doctors know exactly who you are and who your baby is before you've said your name
    
15. ...you look at dolls clothes and wonder if they'd fit your baby
    
16. ...you have a prepared answer for "isn't he small"
17. ...your baby has started sleeping through the night, but you still do hourly observations to make sure he's still breathing
18. ...the first thing you sit down to in the morning isn't a cup of tea, it's the breast pump
19. ...you put your feet up to read charts and notes each morning, not the paper
20. ...you are still charting how many times your preemie has had a dirty / wet nappy at 18 months old
    
21. ...the beep of the microwave sends you into a blind panic
22. ...you start lying about how old your child actually is to avoid all the annoying questions
23. ...you still have frozen EBM in the back of your freezer 2 years on!
24. ...you have the direct childrens ward access number at the top of your speed dial and all the nurses know you
25. ...you go to the pharmacist and they immediately look for prescriptions with your childs name on even if you haven't ordered anything
26. ...you have a whole heap of answers ready for questions on oxygen
27. ...the labels in clothes mean nothing - if it stays up, it'll do
28. ...strangers mistake your 21 month old and 8 month old as twins
29. ...you use the raincover on the pushchair for the first 6 months after baby comes home regardless of season or weather
30. ...your work colleagues deliver your 'congratulations it's a boy!' card at the same time as your 'sorry you're leaving to have a baby' card
31. ...on the postnatal maternity ward you use the cot to store your belongings
32. ...in the hospital canteen the till operator gives you the staff discount because you eat there so often
33. ...the nurses buzz you in automatically, because you've been there that long
    
34. ...as a stay at home mum, the first thing you say to your husband as he walks through the door is not 'how was your day at work, darling?' but a full handover of your baby's cares, feed regime and drugs for that evening
35. ...approaching a junction you find yourself getting in the lane for the hospital, even though your baby has been discharged.

Many thanks to all the parents on the Bliss messageboard who contributed to this list.

Christmas Cheer

I remember the day our son came home. 101 days after I'd first started my daily trips to hospital, 3 months after he was born, and 4 days before his due date, we were finally able to bring the little fella home. No longer would we have a life fragmented between Eoin's siblings at home, hospital and in my case work. No more morning calls to find out what sort of a night he'd had, to find out his weight, which nurse was looking after him and how he was doing. No more rushing home from work, throwing dinner down my neck and straight out to hospital for the evening - every evening. No more petrol station coffee and chocolate to just give us enough energy to make our way home at the end of the evening in hospital. And no more alarms.

When it came, it was remarkably, scarily, quick. We arrived to discover today would indeed be 'the day'. We were handed a big carrier bag full of drugs, were taken through them to ensure we knew which, when and why (16 doses in all, some daily, some twice daily, some thrice daily), a quick go on the resucitation doll and then we were away. Our little man was ours, in our care and at last we were a fully complete family.

Great news then, that some of the tiniest babies have beaten the odds and will be home for Christmas. In New Zealand, a preemie born 16 weeks early has arrived back in the country after being born in Australia. After a special flight, Drew, born weighing just 760g is now in New Zealand will be in hospital for a while longer.

And on the other side of the World, the World's smallest ever baby, weighing just 259g has also come home in time for Christmas. Olivyanna was born in Alabama at 24 weeks, one of triplets. Born in August, Olivyanna came home last Friday, 18th December.

Season's Greetings and Best Wishes to all preemies and their parents, whether they are still in hospital or have made it home, or perhaps more importantly, if they didn't make it home.

Digest

I always go away on business with the greatest of intentions - I'm going to get loads of reading done, catch up on lots of work and do all the other things I don't normally have time to do like a couple of blog posts. It never works like that! The 'here and now' always takes over and before you know it you're sat in the lounge waiting for the plane home.

As such, here are a couple of things that caught my eye over the last week or so that I would have liked to blog about, if only I had the time...

Fundraising

Great news is that the Telegraph has decided that Bliss will be its Christmas Charity for this year. This article discusses that it is 30 years since the Telegraph originally reported on the plight of the UK's premature babies. As a result, several letters in response later and a new charity, Bliss was formed. The article goes on to discuss the issues that are regularly discussed here (e.g. this one). Go ahead and donate to a great campaign. Or even better, donate via my site and help me get to Paris!

Research

Interesting research out of Boston Children's Hospital. Researchers have determined that stem cells from bone marrow may reduce inflammation in the lungs of preemies, and reduce the impact of chronic lung disease. CLD effects many preemies who spend a long time on either a ventilator or other breathing support such as CPAP. It can lead to longer term requirements for oxygen on coming home and issues with lung health as they grow, including increased risk of bronchiolitis or other breathing complaints. As a result of spending two months or so on CPAP, our little fella has CLD although a relatively mild version. He was still hospitalized on his first Christmas Day with bronchiolitis, but does not need oxygen at home. What is does mean is that is he gets a cold and it typically knocks him out more than a 'regular' child as it goes onto his chest. From mild cases like Eoin through to those who require oxygen support at home, anything that can help has got to be good news. This may be the next push since surfactant and steroids were developed to give premature babies as much chance as possible despite having such immature lungs.