Message in a Bottle

Some NICUs in this country are fabulous, and are set up to provide high level support for women who want to breastfeed their premature babies. Others, sadly, are greatly deficient in this area and fail to provide consistent, expert, informed advice to mothers. This post is about such units, so if your experience was a good one, feel free to miss out today, and join me tomorrow!

Having a premature baby is a massive shock. One minute your sat on the internet ordering maternity clothes for the third trimester, the next you are in hospital, one way or another, delivering your baby. You have missed out on getting a nice bump, having bump art and/or casting, a proper labour without the stress and the guilt, and having your baby delivered onto your chest for skin to skin, and those first attempts at breastfeeding.

All NICUs that I know of are very keen to ensure mothers express. Most have machines you can borrow. In our hospital the machines were ugly, nasty things, been in that unit for years, they were noisy and “grabby”. I hated them. So much that I shelled out £200 for a decent one, afterall, I would be breastfeeding mother long term and it would come in handy.

I felt a lot of pressure to express. It didn’t worry me, as I knew, as soon as I was told that I would be delivering at 27 weeks, that I would be required to express. In my mind I was expressing partly to feed my baby, but mostly to ensure my supply would be kept up ready for Joseph to make the transition to full breastfeeding once his suck swallow reflex had developed at around 34 weeks. 

As the time came to start breastfeeding, I felt resistance. At first I thought I was being paranoid. Only one lovely nurse helped me in those early days, and she admitted that she “wasn’t a fan” of breastfeeding, but had recently completed some training. Slowly staff began, one by one, to tell me that it may not be possible. Joseph was too small. In desperation I ordered this book. I read it, I put it on top of the incubator whenever I could, to get my point across.

I was asked to introduce bottles. I was very concerned about this, as firstly, the book advises against it (the book is actually written for staff in NICU not parents), and secondly I was very concerned about nipple confusion. I also knew that the baby’s action on the breast is different from the bottle. I was dead against it.

The pressure I was under was immense. The consultant was brought in to deal with the obstructionist, difficult mother (who moi?) and made it clear that the policy was to combine the two and it would be fine. Fine. All the other babies were managing it. I felt like screaming. The other babies were all later gestation and not IUGR. I knew for a fact that some weren’t managing both.

To my great shame, I gave in to the pressure. I wish I hadn’t. I agreed for one bottle to be given late at night, for comfort, but that was it. Of course, this opened the floodgates. I was under even more pressure. One day one of the nurses suggested I give the bottle. It was my breast milk, but it felt so wrong. I cried as Joseph sucked, and took almost all of it. It was the beginning of the end.

Soon after, my breastmilk dried up. I don’t know whether it was the psychological impact of dealing with the NICU staff, and of seeing Joseph take a bottle, rightly or wrongly I felt rejected. I don’t know whether, in the greater picture of things, it was the physical and mental trauma I had been through. The blood pressure drug , methylodopa, that I had been on for 2 weeks leading up to Joseph’s birth and four weeks after, bolsters the supply so coming off it, may have caused my milk supply to drop, in addition magnesium sulphate can, too, affect supply. Perhaps it was a combination of all of it.

One I had agreed to bottle feeding, discharge planning had been put in place. I had no idea that this would happen. If I’d known, would I have given in even sooner? I doubt it, but the thought is there.

I really got the impression that in our unit, breastfeeding mothers were a thorn in their side, they stuffed up their neat little plans. It’s alright to have them pumping whilst the milk is going down a tube, but that establishing feeding takes too much time. 

I felt there was a distinct lack of expertise with small babies. One of the NHS trust breastfeeding advisors came to visit me on the unit (on my insistence might I add) and gave me loads of advice, then asked to see Joseph, and just shook her head.

My experience is by no means unique. Breastfeeding, true breastfeeding, is not encouraged on many units. There is a lack of time on NICU units for staff to provide additional services, and on small units, they do not have the resources to hire specialist lactation staff. I wonder, too, if there is pressure from the big formula producing companies. Cow and Gate products proliferated on the ward. 

At the heart of this, are mothers and babies. We are so conditioned now, when pregnant, that breast is best. We are told all the time of the benefits, that it protects babies from infection, it’s cheap, it’s portable, it’s convenient.  For the mother of a premature baby, its the closeness we crave, the feeling that only we can suckle our young, that only we can provide what they need. We have missed out on so much.

One of my friends put it best

“(lack of support for breastfeeding)..... makes me feel so cheated. I feel like I really missed out - no bump, no labour, no breastfeeding - hard to feel like a proper mummy”

Nobody's Fault but Mine

There is something that unites most mothers of premature babies. I haven’t met a mother who doesn’t feel this way. Who hasn’t sat by an incubator, tears welling up in their eyes, thinking this is all my fault?

As humans, our gestation period is 38 weeks (40 if you include the 2 weeks from your first menstrual period)  Our wombs are designed to keep baby’s in situ for that period of time, whilst they grow, their internal organs develop, and they lay down fat stores, ready for life in the outside world.

The very sad fact is, that particularly in first pregnancies, there are so many unknowns, and it is impossible to predict who might give birth prematurely. There are so many reasons babies arrive early, and in some cases, no reason at all can ever be found. Even in subsequent pregnancies, the first baby or second baby can be term, then inexplicably, things go wrong next time. 

But that doesn’t stop a mother’s guilt. It is our job to incubate our babies. And when there is a failure, it isn’t “one of the those things”, it’s us. I know of women going into premature labour who are told to push and feel very strongly that it’s wrong, that they should not be pushing yet. We are to blame, we should be caring for those babies in our bellies, not sitting in a scary hospital ward surrounded by equipment, staring and marvelling at our foetus like babies struggling for survival in the outside world.

When I was going through our journey in NICU I struggled every day with feelings of guilt. Every time Joseph had a bad day I would go out into the garden at the hospital and cry, blaming myself. When he cried inconsolably, when I held him and he buried into me, when he had unspeakable procedures done to him, I felt so awful, that my little baby was going through all this, and it was all down to me. Major and complete mummy fail.

Our NICU is in the heart of a very run down area of our town. There are many mothers going through NICU like me, with medical conditions or with spontaneous labour or premature rupture of the membranes, but then there are the “other mums”.

I recall vividly one day, there was finally another 27 weeker on the ward, a little girl. One day her mother was ushered out of the ward whilst x rays were done, she was thrust unceremoniously in the hall way, and left to her own devices. I looked for a minute, and marvelled at the difference. Everything was always explained to me, and someone would invariably offer to sit with me whilst Joseph had procedures done.

This mummy was different, she was 17, she was addicted to crack cocaine. I went up to her and smiled, popped my arm around her, and we went and sat down and talked about babies. She’d gone into labour on the bathroom floor. She was terrified and bewildered. Finally the curtains went up, and the ward was reopened, and she tiptoed up to her baby, and resumed her cot side vigil. One of the nurses came to me later and thanked me. She looked at me and said “do you know why she’s here?” I shot her a look back and said “because she’s had her baby prematurely and she’s scared witless – just like the rest of us”. Blame has no place in the NICU.

I didn’t blame that mummy. Who knows why she went into premature labour? There were crack addicts who were in advanced stages of pregnancy whilst I was on the antenatal ward, why had it happened to this mummy? It’s not my place to judge, it’s my place to be a mummy, and that means helping other people be mummies too. 

1 in 9 babies are born prematurely. There are a lot of mummies maintaining that bedside vigil, hoping, praying, and blaming. 

This was not your fault. It was not your fault your baby came too soon. It’s not your fault that you were unable to keep your baby inside. It really isn’t. Even if you did do something that looking back you wouldn’t have done, such as smoke, or drink or take drugs, there are people who do these things and have healthy term babies.

I don’t know why you had your baby early. I don’t know why I got pre eclampsia at week 27 and not week 37. I don’t know why. You don’t know why. Not even the highest consultant in the land can say why it happened to you and not your sister, or your friend, or your neighbour. 

This is not your fault or my fault, and the guilt and regret is not helpful, not moving forward into the future, it’s counterproductive.

If you’ve had a premature baby, in all honesty, I believe you have saved your baby’s life. You have gone to hospital in a timely manner, your baby can be treated, and your baby can grow, and through all this, so can we. It may be a cliché but “it’s all character building”, and if you learn and move through it, the guilt and regret, can make you a better mother.

A Spoonful of Sugar

Do you remember being a child and being given a spoonful of sugar after a nasty cough medicine, or before it, to sweeten the taste? When Joseph was in special care I was quite stunned that I was asked to give consent to using sucrose solution before medical procedures. I had never heard of this before. At first, I consented. Most commonly it was done before heel pricks, and putting in lines. It was explained to me that the sweet taste would distract him, in truth, its administered as a mild analgesic. 

However after this had been administered a few times, I noticed Joseph would become agitated at the taste of the sugar, like he knew that the sweet taste would be followed by something nasty.  I was unconvinced about the use of sucrose. Of course, as mentioned before, I had a no Google rule during Joseph’s stay so I hadn’t questioned it. I should have realised that it wasn’t run of the mill when it was in a locked cupboard and two nurses had to sign for it. Imagine my suprise when I discovered that my scepticism about the use of sucrose was not unfounded, and that doctors and researchers have expressed concern, and in fact, some of the nurses didn’t like the use of sucrose either. 

After a few times, I asked for expressed breast milk to be used instead, and for Joseph this seemed to work much better, and my consent for sucrose was withdrawn. He enjoyed breast milk pipettes at other times as part of his mouth care, so he didn’t feel as suspicious about that! (at this time Joseph was still tube fed)

During my discussions with other mothers of premature babies I have discovered that the use of sucrose in NICU is not widespread around the country, in fact less than half of the mothers I spoke to had had sucrose used during the course of their baby’s care. 

There is controversy surrounding the use of sucrose in neo natal care. The studies that have been done are small, one that I read was conducted in Leeds and only had 15 participants, all 32-34 gestation babies.

The theory is that sucrose may have an analgesic effect, but it is highly short-lived, it lasts 5-9 minutes, so must be administered in a timely manner to have any effect. The effect of the sucrose is measured by looking at the heart rate and the baby’s facial expressions. 

There are a number of concerns about the use of sucrose. The majority of the concern surrounds the research. None of the studies have looked at the whole NICU stay, just instances of administering the sucrose and analysing the baby’s response to the procedure following. For a baby like Joseph, this is obviously a concern, during his initial weeks Joseph had several procedures daily.

There is concern that the long term neurological impact of using sucrose is not known, as there have been no studies, that I can locate, that have followed up these babies. The conclusion that all researchers have come too, and those analysing the research, is that much more research is required, in terms of long term ramifications of the use of sucrose, as well as more research in terms of extremely premature babies.

Since reading about this issue today, I have become upset and a little annoyed. I had a lot of issues when Joseph was in hospital, because I feel that I was not able to give informed consent. I was asked, but I didn’t know what I was agreeing to, I had no idea about the research or the controversy. I felt I wasn’t really given a choice, and am disappointed that there isn’t more quickly accessible information given to parents about the administration of sucrose. Of course, anything that made Joseph’s treatment better and more bearable, I was all for, but to me, there isn’t sufficient evidence that it is effective for repeated use over a number of weeks . Sucrose is safe, its cheap, and its readily available. It also is not “owned” by a drug company, and doesn’t require the same sort of licensing, and thus testing a drug would have to go through.

One of the problems in Neonatal care, it would appear, is that there is a limit to the pain relief options open to neonatologists in the case of very small and extremely premautre babies. Morphine is used for neonates, but none of the topical analgesics (that is, those applied to the skin) have been tested for the use in neonatal care.

I am grateful, however, that now it is widely known and accepted that babies from 24 weeks gestation have defined neurological pathways, and feel and can process pain, and that research is ongoing into this field. As a mother, I am so grateful that doctors and researchers care about pain management, and looking after our tiny vulnerable babies. 

I am also heartened that the following are recommended for pain management of infants as well as or instead of the sucrose:

Comfort suckling – on a dummy or breastfeeding

Swaddling

Containment holding

Procedures being “clustered” and done all at once where possible

Procedures being carried out by highly experienced staff

Kangaroo cuddles with the parents.

 Just a note: I did conduct research for this blog, I have not referenced it here, for a few reasons, first of all, this is a blog, its not a scholarly piece of work. Secondly, the works I have read are intended for doctors and scientists, not parents.

If you are intersted further, these are the pieces of research I found that were freely available

Avery's neonatology: pathophysiology & management of the newborn - available free on Google Books - and the best I have read on the topic

http://www.medscape.com/viewarticle/458592 

http://www.rch.org.au/rchcpg/?doc_id=8590 

http://pediatrics.aappublications.org/cgi/content/abstract/125/5/1042

To Where You Are

Fly me up to where you are
Beyond the distant star
I wish upon tonight
To see you smile
If only for awhile to know you’re there
A breath away’s not far
To where you are

To Where You Are - Josh Groban

Posted in memory of the babies who are not with the mummies and daddies and siblings today - born too small, too sick, too soon. 

This controversial post, is like many this week, sensitive. If you have lost a baby, please consider whether reading this is what you need, in this moment. If you do decide to read on, I urge you to visit this link first, particularly if you have been in the position of withdrawing treatment for your baby. 

I was watching a cookery programme over summer, and one of my favourite quotes from that programme was “just because we can do something, doesn’t mean we should”. Although it applied to some weird fusion culinary technique, this quote pertains very much to medical science as it does to cookery.

And sometimes, we forget, that behind science lie lives, in this case very tiny lives. Advances in science mean that babies who, like mine, 20 years ago, would have been left to pass away, can be saved. And that’s amazing. And I am grateful. Forever grateful.

But , of course, saving tiny lives is not without its risks. Very early babies can suffer from life limiting conditions and severe disabilities, but also, they can be fine, productive members of society. They can struggle with everything from breathing to consuming food, cognitive development and mobility. Or they can breeze through and have no problems. I am sure, that sat amongst the ventilator equipment, the computers, the arsenal of medications, every neonatologist has wished for the crystal ball, which babies can be saved and have a high quality of life, and which ones can’t.

Of course, the problem is that some later premature babies or even term babies can have very severe problems, and the same debate pertains to them but perhaps to a lesser degree, the choice being less obvious that for those babies born at the very edge of viability, however I do address the problem of withdrawing treatment later in this piece. 

Currently, for premature babies, the guidelines are as follows. If a baby is born at 24 weeks or beyond, then every effort is made to give those babies what they need to survive and thrive.

If a baby is born sub 24 weeks, then it is considered a “grey area” and is assessed case by case. As far as I can ascertain, this is entirely a post code lottery. In some hospitals they refuse to do anything to help a baby born below 24 weeks. They will not administer steroids to the mother to strengthen the baby’s lungs, they will not administer life saving treatment when the baby is born, the baby is left to slip away. It’s a heartbreaking problem, during my journey with Joseph I have met some dear children who were born before the magic 24 week mark. 

So here, perhaps, we are discussing what happens with babies that have been born, the decision was made to commence treatment, but it becomes apparent hours, days, weeks even months later, that things are tough, that the baby is not able to make it, but can be kept alive with the help that it is receiving in hospital. 

The controversial Australian ethicist Peter Singer says the following about newborn babies “Human babies are not born self-aware, or capable of grasping that they exist over time. They are not persons”; therefore, “the life of a newborn is of less value than the life of a pig, a dog, or a chimpanzee.”

It seems so foreign to me, perhaps because I have now seen so many babies born as foetus, they look so full of life, and of wisdom, and of hope. I cannot understand Singer’s views on this at all. And I do not wish to. But his influential writings have been accepted by some doctors.

So which babies do we save? Which ones do we invest resources into? Do we try and save all babies born regardless of gestation, do we discriminate on weight? What do we do with the problem of these very small premature babies.

During my research I found this beautiful article and I urge you to read it in its entirety.  Dr  Davies feels strongly the decision lies ultimately with the parents. 

“When the best path is unclear, fully informed parents are the best decision-makers. No one is closer to that baby in blood, body and spirit than the mother and father. Their best guess is the best one of all. No one else can decide for their baby as carefully, thoughtfully, purposefully and solemnly as they do. No one else can be more agonized, calculating and soul-searching. This is a decision that must be made with the mind, gut and heart. Your own baby would want you to make this decision, not strangers.” 

I would not like to live in a world where we predetermine, at birth, who lives – who dies. It’s not a world I would want to live in. As humans, we embark on great things, such as scientific endeavour, and we have a great power to save lives, to push boundaries, to bring babies into the world who would otherwise die.

We need, in the midst of scientific endeavour, retain our compassion, our humanity, our love for one another and our interconnectedness. 

These problems and struggles will never leave us, and as a community its up to us to guide our decision makers, to inform public policy, but most of all, to hold the hands and the hearts of those parents faced with the most impossible of decisions.

Again and Again

This topic is very emotive and I have struggled as to how to present it here. Please, if you have had more than one premature baby, I am not blaming you, or wanting you to feel anymore guilt that you do already. I'm just putting some thoughts out there, of my own, I am not judging anyone's choices. 

"So, when are you planning to have another?" It's a question I am asked often. Sometimes I can answer with a grin "no way Jose", sometimes factually "when there is a definitive treatment for pre eclampsia that doesn't involve swift delivery of the baby", and sometimes it sends me scurrying in tears. It's no secret. I want another baby.


But, as much as I adore my son, and don't get me wrong, I am grateful every single day for the care that kept him alive, I don't want another NICU baby. I am not mentally strong enough. As discussed before, due to various risk factors, my recurrence risk is around 80%, my consultant guesses she could get me to 30 weeks.

A lot of the time on my blog, I share the sadness of seeing your baby in hospital, of watching everything they go through, of keeping that bedside vigil, of weathering the highs and lows, the amazing soaring highs, and death-defying crushing lows, of a premature baby's fight for survival.

But there's another side to the story. The mother (and the father). Like most pregnant women I had read books, watched television shows, I bought the magazines and I bought the dream. No one talks in any detail about premature delivery, of what happens if you don't get your "normal experience". Yes, you see the odd success story, but magazines never explore the real story.

I feel cheated. Personally and at a deep level, cheated. I am so angry I didn't experience a contraction. I looked forward to labour, to experiencing it, being present in it, that challenge of pushing a watermelon out of the eye of a needle, I wanted it! I wanted that closeness with my husband, that moment of crowning, those final pushes, the baby delivered on to my flesh, the first furtive breast feeds, the finding out the gender together. I wanted it, I bought it, I expected to get it.

The reality is, I didn't get it, and I am not alone. But for me, we have stopped. No more babies. And its bloody hard to have made that decision, other people who had babies the same time I had Joseph have new ones now. And that will never be me. And it sucks. I try and be noble about it, but I feel robbed.

There are many reasons babies come early, most commonly there is no definitive reason. Therefore the ability to assess the risk of recurrence is somewhat impeded. The common reasons, such as incompetent cervix, can be mitigated with a stitch, but these are not 100% effective. Reasons such as infection cannot be predicted, and so little is known about recurrent infection and the risk of premature labour and delivery.

But what if you know. What if you've had three or four or more premature babies. What I haven't ever really explored here is cost. The avereage of cost of a NICU stay is £838. Not a week. A day. £838 a day! Joseph was in 76 days, admittedly not all at this high level of care, but his stay would be estimated at around £65 000. And that doesn't include my cost, two nights in HDU, surgery with double the staff of a normal section, and a 7 night stay afterwards.

Premature babies cost a lot of money, in our case, Joseph is well, and hasn't really cost the NHS any more than your normal baby. However some of these babies require an ongoing investment of care, both from the health service, and then in the educational sector later on.

I don't know what the answer is. I do know there are a lot of women who have had more than one premature baby that have no idea why their babies have come early and have been told "its one of those things". I know other mothers who have had very good follow up care and have gone on to have full term births next time, with stitches or progesterone therapy, and most often, both. I know women who have had pre eclampsia in first pregnancies who have gone on to have fine second pregnancies.

But I know women who have been advised not to go again, and have. Again and again, have premature babies. My husband has a relative who lost her life having her last baby.

I think the answer here is research and education, and straight talking from professionals. My own consultant was incredibly tactful when discussing my recurrence risk. She asked me if we were considering more, I said, probably no, but maybe. She ran through my risk factors. I ased her straight out "come on, if we're better off getting a puppy, just say so, please", I had to really press her, and then eventually she said it "yes, get Joseph a nice puppy, please!"

I think we should know the true cost of having early babies. I think we should know the long term risks. I think to make informed choices we need to be more open about what we are dealing with, risk of death (both baby and mother), the use of very finite resources, and the possibility of long term consequences for the child as it ages. Let us make a choice, but let us be informed. 

Not everyone is as lucky as me, to know the reason their child came early. Not everyone is as lucky as me. I never thought I'd have a baby, so to me, to have one baby, is an enormously massive, wonderful gift. Yes, I long for more (and a pink one would be nice) but I have my baby. Not everyone is as lucky as me.

Controversy Week

Today's blog dare is to write about a controversy in our chosen area that our blog normally concentrates on. I asked my followers on the Not Even a Bag of Sugar Facebook page for some suggestions, and have enough for a week. So I have decided to spend the week focussing on some controversial topics in the area of premature and poorly babies.

Some of the topics will be technical, such as the use of sucrose in the management of pain in premature babies, some will be very difficult topics, such as should mothers with a history of pre term birth keep producing babies, which are such a drain on NHS resources.

During this week I am bound to raise some hackles, or perhaps upset some readers, which is not my intention. The views I will express are purely my own, and are hopefully balanced, but I think it's important to not shy away from controversial topics but to embrace it, discuss it, and thrash it out in public.

I hope you find this week interestng and challenging, and please share your views too.

Writer's block

I'm having a brain freeze today. Some days when I blog I am overflowing with ideas, some days I am so grateful for the blog prompts on The Blog Dare, and other days I'm just frozen. The prompt today is about product reviews. I don't appear to be that sort of blogger. I don't know if I want to be that sort of blogger.

To be fair I have done one product review for Tiny Little Baby . But I bought the product and blogged about it because I felt it would help others. I didn't want or expect anything from the review at all, like any good book, I just wanted to shout about it, to help others in my position, wanting to document their babies first weeks but finding that normal record books just didn't cover it.

So I don't feel I can do this topic justice. I have no feelings one way or the other about product reviews, only that my blog doesn't seem to be the typical "mummy blogger" sort of blog, but there's loads of other mummies who don't fit the "typical" profile! If there is one!

This weekend has been about getting ready for our flight to Australia, of getting toys and bags ready, and buying clothes for Joseph, most of which came from our local charity shops. This week will be a restful one, hopefully, as last week was a very administrative type of week, organising Visas for Australia (although a dual citizen I buy a Visa, so that Joseph and I are going through together on our British Passports, and besides which I forgot to change my Aussie passport to my married name, and I have to go out on my British, switch to Australia to enter and vice versa.. With a toddler, my brain is highly likely to be addled and I'll make a mistake!

I am looking forward to seeing some sunshine, and seeing my mum, so perhaps I will leave you with a photo, of Joseph enjoying a rare moment of English sunshine in Hyde Park this year.