Wednesday, 3 December 2014

Nice NICE Guidance and sucking eggs

I haven't updated this blog for a little while but it seems fitting to break the fast with the wonderful news today that NICE guidance has finally been updated to reflect the evidence surrounding birthing at home, one to one midwifery care, delayed cord clamping and minimising separation of mother and baby.

You can view the updated guidance here:

http://www.nice.org.uk/guidance/CG190

While I am over the moon at the update I can't help the feeling that this is a little like teaching Grandma to suck eggs and actually most of this is good old fashioned excellent midwifery philosophy already but it would seem churlish to point this out at length.

What is key however is that while much of it is midwifery wisdom - what midwife will argue that one to one care and keeping mother and baby together needs new research and evidence to inform our practice with this - it is not yet in the public forum. Women have been scared out of having their babies at home and this latest guidance lays it out on a plate.

"If you are having your second or subsequent baby, and you are 'low risk', that is to say that you and your unborn child are healthy and you have had normal previous births, then giving birth at home is a safe option for you" (NICE CG190. My paraphrase)

It is interesting to note that the Guidance also points out that practitioners should not disclose personal judgements or views (1.1.9) about the woman's choice of birth place. I'm saddened that it needs to be laid out so explicitly. Presumably the 'haters are going to hate' (I'm talking about you 'Dr' Amy Tuteur) but it is exciting to have the updated evidence to hand, to be able to signpost women to the information they need to make an informed choice and this is at the heart of midwifery.

Monday, 5 May 2014

Dear Baby X

Earlier this year I observed an autopsy of an infant girl. This is my response to the encounter. There are no identifying comments in the text.
 
My assumption is of cot death though of course this is not diagnosable at point of autopsy.
 
I lost my own brother to cot death when I was 5 years old. I remember him vividly and I remember his absence in our home just as clearly. Our lives were never the same again; his loss is still felt now nearly 30 years later. Seeing Baby X brought so much of the pain back into stark focus and I wondered if the mortician had treated my brother so kindly and with such respect. I hope so. I wrote this letter because I was shocked by the violence of my feelings. I was literally knocked sideways by the strength of them and they seemed to have no resting place. I started to write the letter in my head and began to find some peace as I acknowledged her life and paid my respects. I can't bring her back to life, I can't heal the pain of her parents but I can lay to rest my own feelings. She matters and that is what my own heart needed to know.
 
 
Dear Baby X,
 
I wanted to write to tell you about the last time I saw you… the first and last time I ever met you. I have to confess to being unprepared for such a significant moment in my life but I want you to know that you changed my life and I will never be the same again.
 
I started to feel nervous as I got changed into scrubs to enter the mortuary, doubting the wisdom of coming but there was no going back and before I knew it I was walking into the room where you lay. I was first drawn to your sweet little face, long eyelashes resting gently on your rosy cheeks, for the life of me I would swear you looked asleep and my instinct was to pick you up and wrap you up warm because Baby you looked too cold on that table. Your hands were laid by your sides, fingers gently curled as if they had just let go, I imagined reaching out and your fingers grasping my own.
 
The tubes and needles used to try to bring you back to life were still there, evidence of the battle to save you and bring you safely back to your Mummys arms where you belonged, but also a reminder that it wasn't possible. Everything had been done but it wasn't enough and you had already gone.
 
The mortuary technician was so gentle with you and though you can't feel it any more, he was careful not to hurt you. He told me the story of your passing and I thought about your family and my heart hurt with their pain of losing you.
 
The procedure itself was hard to watch but I stayed with you and thought of the life you were meant to have, of the potential in your little body and in your face which looked so ready to smile and giggle. I imagined the happiness you had already undoubtedly brought to your family and the memories they will be holding on to, and though it may take them a little while to smile again, when they do it will be because they remember you.
 
When the time came for me to leave, I knew I was leaving you in good hands. That your body would be respected and treated with dignity, and returned to your Mummy so she can say her last goodbyes.
 
Most of all I wanted to let you know that you matter more than you'll ever know. I am… was a stranger to you and your family, but you touched my heart and I am grateful for you.
 
Yours,

Wednesday, 30 April 2014

Six months in... Autism not Autistic

We are nearly 6 months into our sons diagnosis with autism and I do feel we are still on the steep end of the learning wedge. I feel there is so much I don't yet know and there really is a lot of conflicting information out there and while I generally feel I can pick my way through it, what is becoming increasingly apparent is that while autism is a THING, it is not a thing firmly wedged in a box. Yes there is the triad of 'impairments' but there is a range within those too. So you have multiple spectrums within the spectrum. So this post is a bit of a collection  of the information we have gathered along the way as well as a record of how we're feeling and coping too.

We don't tell lots of people about his autism, mainly because the people who matter already know, but also because of the lack of understanding we have already encountered. Many people hear 'autism' and assume the person will be non-verbal, unable to make eye contact and hand-flap all day (stimming) but while these are certainly some characteristics on the spectrum, they are not every child.

We decided fairly early on that in terms of language, and the power we give the word autism in our lives, it wasn't going to dictate. Our son HAS autism. He ISN'T autistic. This is an important difference to us because it reminds us that his autism doesn't define him and though it is a part of him and part of what makes him the unique, wonderful and challenging person he is, it is not all he is.

SALT

Alongside the autism he has a pretty profound speech and language disorder primarily affecting his receptive language (what he can understand) and to a lesser extent his expressive language (which is improving largely due to the intensive therapy he receives). Early on he was diagnosed with verbal and oral dyspraxia which is a disorganisation in the messages between his brain and mouth/language centre, then a phonological disorder has subsequently been diagnosed and it is similar in that it means the person has difficulty organising speech sounds. He appears to stutter sometimes but its not a true stutter (so his SALT says anyway), just that his brain is thinking ahead and has to catch up, again its a disorganisation.

Sensory Processing

Before the autism came sensory processing disorder. I say before because his paediatrician says that autism better describes his range of difficulties, inclusive of the sensory issues. Sensory Processing however looms large in our minds all the time because it is how we make sense of the world and for him, well he doesn't have the luxury of making those automatic thought processes we do all day, every hour, every minute. He can cope reasonably well with noise. He can cope reasonably well with a light touch. He can cope reasonably well with a frantic activity happening in front of him (ie his brother jumping up and down, or the TV etc). What he can't cope with is all those things happening at once, its literally too much for his brain to make sense of at one time. We think of it like layers, too many layers of sensory input makes him anxious and frustrated and he generally responds by either becoming aggressive or withdrawn, though we are seeing more of the physical behaviour these days.

School

He is still in a mainstream school and has a fulltime Individual Needs Assistant (INA). He has a statement of educational needs from the local authority though the title of this will change later this year. Not that anyone has really told us much about it. We feel as though his needs are largely met in the school at the moment, mainly helped by the fact he goes to a special facility two mornings a week for SALT and his INA is brilliant. At the moment we feel very strongly that we don't want him to go to a mainstream comprehensive/secondary school and this is because while children at primary age are generally very inclusive and we have no issues with bullying etc, teenagers (bless them), often can't help themselves, its the hormones and my son doesn't have the capacity to understand this. He dances to his own tune and expects everyone to be nice and lovely and if I can try to protect him from this, I will. Also I don't have the confidence that he would be supported to be the person he can be, rather than held up as failing to achieve when measured against the national curriculum. Of course this is all early days and he is in year 1 at the moment so I'm open to the fact that it is a while away.

Well that's all for now, bit of a long one, thanks for reading if you made it this far :)

Saturday, 1 March 2014

Love much

Just recently I have been so busy you would not believe it. Between the course, my family, church and work there has literally been no time to think. This has been a bit frustrating because despite all those things, I really want to do more! I am missions secretary for my church and before midwifery I was able to be very involved in fundraising and I loved trying to motivate the church into giving to our projects. It was very satisfying but now I do feel like I am letting them down a bit by not being so active. Thankfully others have stepped forward, things change and I do believe God fills the gaps which is liberating!

It does leave me with the question of usefulness and ministry though. As a Christian I am 'called' to love and serve God and to do it to the best of my ability and with all my heart, soul and strength. This motivates me to do my best in all parts of my life but  I have to say I wondered briefly if going into midwifery was me being a bit self indulgent. I was desperate to do it and the application process was all consuming, an obsession almost. Then being on the course in fact is not that different and midwifery has become a part of me, I rarely feel so fulfilled as when I am working with the women and their families.

So is midwifery a ministry? Of course it is!

I recently attended a Christian Medical Fellowship meeting and was encouraged to see midwives and nurses there sharing the opportunities they have had to show Gods love to their patients and to the women under their care.

This struck me like lightning. Jesus tells us in Matthew 24 that when we clothe and feed the poor, care for the sick, take in the stranger, we do all these things for Him and when we turn away from those people we turn away from Him. Loving people is loving Jesus. It is that simple.

Every kind word and skilled action is an expression of love. It is a privilege then to care for people in need because it is an opportunity to share the love the God has shown to us. Every time I support a woman in labour, give her partner a role in the theatre of childbirth is loving God. Caring for their physical needs, learning how to do this skilfully, this is loving God.

There is an amazing opportunity in healthcare, in the NHS in fact, to love people and the time is now to do this. The NHS is having a terrible time of it in the media, hospitals spending millions of pounds on compensation, nurse and midwives are under increasing pressure due to staffing levels and decreasing resources. The 6C's have come out as a response to much of this. It is sad to think that the caring professions have to be reminded to have compassion in practice, but I also feel sure that not a single healthcare professional came into the job thinking they wouldn't care and communicate with excellence, have compassion, be competent, courageous, and committed.

Do the staff feel cared for? In the Christian faith it is acknowledged that we love because Christ first loved us. When we feel love it is easier to express love, it is a simple principle.

We know that nursing and midwifery is a calling and a ministry. As Christian nurse and midwives it is our ministry not only to love the women and patients we care for, but to love the staff we work with. Love is one of those extraordinary positive feedback mechanisms, the more you use it, the more there is to give. Don't be exhausted with the good that you do, ask God for the strength you need to love more and serve more. Love your colleagues, pray for your workplace, love your job - be excellent at it. All of these things are your expression of your love for God.

“I am not sure exactly what heaven will be like, but I know that when we die and it comes time for God to judge us, he will not ask, 'How many good things have you done in your life?' rather he will ask, 'How much love did you put into what you did?”
Mother Teresa

Saturday, 8 February 2014

Breastfeeding in the news

It's been a (shameful) while since I wrote about one of the topics close to my heart (literally) and the truth is I've probably been too caught up in my midwifery training to focus on it however this story led me to lift my head above the parapet of books on my table and say "What the...?"

Breastfeeding mandatory for two years in United Arab Emirates

http://www.theguardian.com/world/2014/feb/07/uae-law-mothers-breastfeed-first-two-years

The UAE has passed a law making it compulsory for mothers to breastfeed their children until they are two years old, the justification being it is the child's human right to receive breastmilk. If mothers are actually unable to breastfeed then a wet nurse is to be provided. The law doesn't state what are acceptable reasons to not breastfeed however. Also offices are being made to provide nurseries so that mothers can breastfeed while at work. Implications of the law mean that husbands are therefore able to sue their wives if they decide not to breastfeed. It is apparently the mothers duty and not a choice.

Fundamentally I am opposed to this move because it is essentially an attack on a womans autonomy over her own body which is not acceptable. I wholeheartedly believe that breastmilk is the absolutely best thing for a baby. It is normal. And yes, there are inescapable risks to formula feeding which people don't like to hear about but are nevertheless present. Women need to make informed choices about how they choose to feed their babies. But that is it, women need to make the choice. It is her human right to not be forced into any behaviour she does not want to engage in. In any other situation this is essentially slavery.

I can appreciate that the UAE is attempting to improve the health of children, they are clearly sold on the benefits of breastfeeding but it is unfortunately at the cost of women's freedom in a country where many already have little autonomy.

Breastfeeding hasn't done too well generally in the past few months...
http://www.bbc.co.uk/news/magazine-25629934 - Was there ever a breastfeeding golden age? Apparently not according to this article, and it has the historical artefacts to 'prove' it...

And this article http://www.theguardian.com/lifeandstyle/2014/jan/03/parents-too-much-guilt-breastfeeding-work notes that nearly half of all new mothers feel tremendous guilt in motherhood and pressure to breastfeed makes it worse. Though my honest opinion is that even if women didn't have breasts and milk grew on trees, mothers would find something to feel guilty about.

I would like to end my mini round up with a heart-warming story about the Pope who, it turns out, is pro-breastfeeding. Who knew?

http://www.theguardian.com/world/2014/jan/12/pope-mothers-breastfeeding-children-sistine-chapel

"If they are hungry, mothers, feed them, without thinking twice,"
 
Pope Francis, 2014