How Do I Help? - Part 2

So your friend's baby is now coming home. What a lot of people don't realise is, that just because a baby is discharged, it doesn't mean they are fixed. The journey from premature birth is not a linear one, its not like recovering from an operation or short term illness, so your friend may still have a lot on her mind, and a lot to do. The first weeks are undeniably difficult, as the baby (and family) make the adjustment from patient to family member.

In the first couple of weeks contact by text message or email is better than phone or calling in, the new mum and dad can then contact you when its convenient. By all means make it known you are there for them, and available to help, but don't be suprised and much less, offended if you don't hear from them immediately.

If you are invited to visit the baby here are some important things to remember.

Hygeine and handwashing - the new parents have probably been given a list of care instructions, and one of the biggies is making sure that everyone washes their hands before touching or handling the baby. If you can pre empt this and do it without being asked, that makes life so much easier. If you are a smoker, make sure you don't have a cigarette for at least 2 hours before seeing the baby, and don't wear clothes that have been around cigarette smoke. It's really important. Those little particles of smoke can irritate tiny lungs.

Colds and bugs - It's really important, but that little sniffle, or that bug you had a week ago, can really knock a premature baby for six. So make sure you are well and truly "bug free" and that goes for your household too. Your child may have a bug that you are immune to, so make sure that you and your family are in good health before seeing the new baby.

A listening ear - especially after the first two weeks, the new mum and dad might be feeling quite isolated. Often it is encouraged that premature babies are kept away from social situations, like baby groups, particularly in the winter months. The new parents may be feeling lonely and isolated. Invite them for a walk, or pop around with a cake or even a picnic lunch. You don't need to be a counsellor or expert, but just be there and ready to listen.

Offer to help - you could take older children to soft play or the park, you could offer to cook a meal or two, or do some shopping, or a little bit of housework. A new baby can be all encompassing, especially if there are appointments and medical needs to attend to as well.

I do think the greatest gift you can give to a new mum (and dad) is time. I am sure an outfit for the baby, or soft toy, or a gift for mum would be greatly appreciated, but an hour spent chatting, or out for a walk is the kind of gift that money just can't buy.

How Do I Help? - Part 1

When a new baby is born, its a time of hope and joy, when a premature baby is born, things are less certain. I've read a lot of posts pn forums and heard a lot of friends who have had premature babies say that their friends and family have not known what to do to support and to help. So I thought I'd explore this a bit further in today's post. This post will focus on the baby in hospital, then my next one will be focussed around when the baby comes home.

What do I say? Congratulations is a good place to start. Different mums I know feel differently about this. Some parents feel its hollow, I did at first, what is there to congratulate us about, our baby is small and sick and no one knows what the outcome will be. Now I am grateful for those who said "congratulations". But say it gently and with a little smile, and leave the door open for the new parents to tell you more.

What do I ask? Focus on the here and now. "How is your little one today?" is a good place to start. Listen carefully and pick up on what is being said, and that can help you in future conversations. You could ask who they think the baby looks like, or what little thing the baby does? Joseph had a habit of lying on his hands and using them as a pillow, and I loved talking about that!

What do I buy? Personally, I always advise against buying clothes. Depending on how premature the baby was, most of them just wear a nappy and a hat for the first weeks. Often the hat is specially made to accommodate CPAP or ventilation tubes. Buying clothes for later might be a good homecoming gift, however to buy a new baby who is tiny, in our case 1lb 7oz, something for a newborn weighing 7lb, is just a further reminder that things aren't "normal".

You could buy muslins or small blankets. I used these a lot in hospital. A dear friend of mine bought me some pretty ones, that I treasured. We used muslins for everything, swaddling blankets, sheets, even their traditional use of catching vomit! If you pre wash these a couple of times in non bio detergent, and re wrap in tissue paper with a nice ribbon, that's even better, ready to use! Another nice gift is a small stuffed toy. Many hospitals will allow a toy on or in an incubator. A personalised gift is lovely, a little cushion, or a door hanger. Story books are a lovely idea, I used to take them to the unit to read to Joseph.

If you would like to buy a gift for the new mum, hand cream is a good one, but look for one that is rich, luxurious, but with little scent. The Body Shop and Crabtree and Evelyn both do good ones. Another nice gift is good quality chocolate. Chocolate is really good for breastfeeding mums, and its easy to eat. Magazines are another nice thing to buy, for mum to read when doctors rounds are taking place, or in the expressing room.

I really want to visit, but they say I can't, why is this? Many hosptials are increasingly adopting an "immediate family only" policy. Small babies are at risk of infection, and the more people coming throught he unit there are, the more risk there is of something coming in that could be very harmful to a small baby. Also units are often very small, and too many visits impedes the staff being able to effectively care for these small babies. It is not all a reflection on you.

I've been asked to visit the baby, but I'm scared. If you've never been in one, a neonatal unit is an intimidating place. We had a number of visitors once Joseph was more robust who had never been in such an environment. First of all, as soon as you get into the unit, wash your hands. It will be clear where the washing stations are. Wash your hands thoroughly.

When you get to the babies cot or incubator, just try to focus on the baby. There may be a number of wires and tubes, the parents will probably explain them to you, but try and just look at the baby, and ignore them.

It's quite important to focus only on the baby you are visiting. Units have a very strict code of conduct about not looking at other babies, and very importantly, not asking questions. I did have this happen a few times with other people's visitors and it made me feel very awkward. Everyone was curious about Joseph as he was by far the smallest baby in the unit, but it did make me feel uncomfortable when complete strangers would ask questions.

Anything else? Don't feel you always have to talk about the new baby. The parents might just need a break from time to time, and want to talk about something else. Ask gentle, open questions. Invite the mum (or dad) for coffee or a meal. Ask if there is anything practical you can do to help. Cook a casserole, run an errand, do some tidying up around the house. Sometimes people are embarassed to ask, but visiting a small baby takes a huge amount of time and emotional energy.

Friendship is so important at times like these, but just be aware that your friend or family member may not be able to show how important your care and concern is, and at times may be a bit distant, I know I was. I had some lovely friends who went out of their way for me, and I didn't say "thank you" the way I normally would, it was like I just had so much on my plate, that thinking about other people was just very difficult.

Next post, we'll talk about how to help when the baby comes home.

Love's Labor's Lost - it could have been me

I am not a huge fan of "modern" TV drama. I am getting grumpy in my old age, and feel that all the good television has already been made. I recently subscribed to Sky, and now have a facility to record programmes, so am recording all the ER episodes right from the beginning. Yesterday I watched Love's Labors Lost, from series one.

I remember watching this originally back in the day, I must have been about 23 or so. So a long time ago. Since that time George Clooney has been in more blockbuster films than I've had hot dinners. ER has ceased to exist. Many of the actors that were household names, are now directors and stage actors.

My initial feelings about this episode back then were that it was good drama but entirely inaccuarate. Surely women don't die in childbirth in the latter half of the 20th century? Eclamptic shock sounded like something out of an ancient medical journal. Never, in a million years, did I consider for a moment, this could be me....

To give a brief synopsis, a healthy woman in her 38th week of pregnancy presents in the ER with frequent urination, and just feeling off colour. Dr Green diagnoses a urinary tract infection and sends her on her way, in the care of her husband. No other members of the team offered the differential diagnosis. The woman in question and her husband weren't educated enough to say "hey what about pre eclampsia"? She then collapses in the parking lot and is brought back in.

What happens next is a protracted and complex affair. She has a full blown eclamptic seizure, which is stopped with magnesium sulphate. She recovers from this quite quickly and is able to talk to Dr Green and her husband and some decisions are made. Dr Green measures the fundal height and determines the baby weighs about 5-6 pounds. He makes the decision to induce labour, rather than taking her to Obstetrics for a caesarean. During the section the woman has another seizure, and the baby gets stuck, a condition called shoulder dystocia. Dr Green can't get the baby out, decides to push it back, and then go to crash section.

It transpires that when Dr Green did the ultrasound, and determined that the baby was a girl, he failed to spot the fact that the placenta had abrupted. So once the baby is out (and not breathing but is resuscitated, happily) the woman starts bleeding profusely, and sadly, dies.

The picture I have selected above is Dr Green speaking to the husband, telling him what has happened to his wife, whilst he holds his baby in the NICU.

Obviously, being ER, this story is dramatic, and I think still, a little far fetched, and I truly hope ER doctors don't handle these cases willy nilly without handing them over to the proper personnel.

However, I can see how this happens. My pre eclampsia was nearly missed. When I went to the delivery suite, most of the midwives thought I was possibly neurotic, but, crucially, checked everything out in fine details, and my severe, early onset pre eclampsia was detected and treated.

But, watching this yesterday, my thought was, this could have been me, and the only reason, if we're honest, is that I had tip top medical care. I had a team of doctors and midwives who were skilled, and who utilised all their resources (there were several phone calls with experts around the country as to how best to manage my care) and both myself and my baby were safe and sound, and are here to tell the tale.

But, as dramatic, and inaccurate in places, this episode is, it serves as a reminder that without good, cohesive medical care, sometimes, childbirth can be risky. I am passionate about good antenatal care,about educating prospective parents about possible complications and about good emergency care, and this really reminded me yesterday what I am fighting for when I work as an activist.

Healthy babies, healthy mamas.

Bring me Comfort

When Joseph was born, we tried tointroduce a dummy, on medical advice. We tried several times, Joseph was a sucky baby,  he had to have a number of procedures and we thought it would bring him comfort, and they are recommended for premature babies. Joseph was having none of it.

In December 2009 a little square of fabric would become very important in our lives. Blankie. Now known as Manky Blankie. Here it is in its first week or two, in its normal position, safe in Joseph's hands (or mouth). Blankie was crocheted by a local lady, and for sale at a stall in Ramsbottom to raise money for the Bury Blind Society. It's soft acrylic, and perfect colours for a little baby.

Blankie was invaluable on our first trip to Australia. Wherever we went, blankie went with us, giving Joseph comfort, and security in an ever changing environment. Blankie had a close call when I mistakenly left it behind at a friends house. It was an awful sinking feeling as I realised I had lost it, and I could have cried. Joseph went without beloved blankie for a whole night, making do with my expensive cardigan!

And on our most recent trip to Australia, blankie was with us still. Not looking quite as bright and fluffy. Joseph sucks blankie quite literally within an inch of its life. I've had to do some amateur macrame to prevent the favourite corner (why he only sucks one I will never know) unravelling and the whole blanket being ruined. I am tempted to unpick and re edge, but I think Joseph would hate me!

We have spares. I even bought a blanket from the same lady to try and rotate, no joy, and my dear friend Stacey helped me find one at a charity shop in Scunthorpe, but nope, another reject. And I recently bought another one in Tasmania. Again, it isn't the same as beloved blankie, and lies folornly at the bottom of the cot.

Blankie only comes out at sleep time. It's so fantastic, the magic blankie, that yesterday when Joseph needed to nap in his pram in between appointments, that the moment I put him in the pram, and got blankie out, he got the message, and slept soundly for an hour and a half. On our trips on planes, trains and buses, it worked like a magic sleep charm.

We love blankie, and it has become like another member of our family. I do picture Joseph going on his first sleepover, his first school camp, and his first night with a girl/boy friend and being attached to blankie!

These Boots are Made for Walking

Joseph is now 23 months. His 2nd birthday is looming. Although really he shouldn't be two until August. It still does my head in, but I find myself still correcting his age, developmentally its only fair, I think.

At our last consultant appointment before going to Australia, I was in tears. The consultant decided Joseph had tight achilles tendons, and this was the reason for him not walking. I was devastated. I was upset because I felt it was my job to know these things, I shouldn't have put his not walking down to developmental slowness and genetics (dear reader, I didn't walk til two and a half and I was a boring termie).

The consultant said he would need Piedro boots, and perhaps intensive exercises. I felt so negligent, and hence my floods of tears. I was inconsolable.

All my friends, premmie and termie, thought that Joseph, and quite rightly too, would do it in his own time, and that I was over reacting. Which I was.

In Australia we saw a physio, at my own expense, who spent an hour with us. She diagnosed Joseph as clever, funny, and too busy to bother with walking which is obviously a bit problematic and hence, not on his agenda, in the too hard basket. She didn't feel that he had tight achilles, or any major problem, and would walk in his own time.

Since the consultant appointment, 8 weeks have passed. Joseph is doing the odd step here and there. My mother's day present was the amazing feat of 10 steps across the kitchen floor. It was such a suprise, I didn't record it.

We saw an NHS physiotherapist today, who was equally as lovely as my Tasmanian one. She thinks Joseph, if anything, is too loose in his ankles, knees and hips, not too tight, but needs no action, just to keep developing as he is doing. She has referred to orthotics, just in case, but thinks by the time our next appointment comes around, he should be making great progress.

I feel so relieved that I am not a bad mother (well not in this respect anyway) and that I hadn't missed anything glaringly obvious. Joseph is just slow to walk, and he will get there in his own time.

Mother's Day

Preventing Premature Birth - Tackling Poverty

This blog post is in response to the documentary 23 Week Babies - The Price of Life, and should be read in this context. Just to explain to those who may not have seen it, this documentary explored whether 23 weekers should be routinely resuscitated, it was not an exploration of premature birth on a whole, looking at causation. And some claims were made in this programme that I really want to explore.

Just to put my comments into context, its not sexy, its not current, but I am a socialist. Always have been, and always will be. I believe that to whom much has been given, much is to be expected. I believe in the redistribution of wealth through taxation, I believe that disadvantaged groups in society should be not only protected, but actively helped in order to escape their situation, and to have happy and meaningful lives. I think the fact we even have to talk about poverty in the UK is disgusting, we have the means to ensure no one is living in poverty.

In this documentary, when looking at Holland and its low rate of premature birth, Adam Wishart said, almost as a throwaway line, the Dutch have a lower rate of premature birth most likely due to lower poverty, and less teenage mums.

I don't think enough is known about 23 weekers, and where they come from, who their parents are in order for us to make such statements, and certainly to my understanding, there is no concrete data to suggest that the rate of 23 weekers specifically relates to socio-economic deprivation or indeed teenage mothers. I strongly suspect that many 23 weekers (and in fact this was the case in two of the pregnancies featured) are multiples, and no one is suggesting that we should do selective reduction of multiple pregnancies, or ban IVF treatments that put more than one embryo back.

The research that is out there in relation to poverty and childbirth focuses around low birth weight babies. Low birth weight is not the same as premature birth. Babies can be born at low birth weight if the pregnancy is shorter, this is true, but what the research is really talking about is low weight for gestational age. Whilst a number of factors outside a woman's control can cause this, such as pre eclampsia and other conditions affecting the performace of the placenta, low birth weight can be influenced by a range of maternal factors, and these are quite prevalent in lower socio-economic areas. Some of these factors include smoking, recreational drug use, poor diet, stress and depression and pre existing maternal illness.

It is most certain that if we address poverty, we can address low birth weight, and most likely, premature birth too, but I am not sure by how much, and I am sure even the most pre eminent sociologist or medical researcher couldn't quantify how many premature births this may prevent. So many women do not know why their babies came early, and would have done anything to prevent this.

And just how much addressing poverty will prevent 23 weekers, who knows whether it would make much impact at all, and if so, not for a long long time.

I think what is important is that we continue to research the specific causes of prematurity - pre eclampsia, incompetent cervix, infection, premature rupture of the membranes, carrying multiples, as well as addressing factors such as smoking and drug use.

I also think education, right from the beginning, is important. In school we teach contraception, we should aslo be teaching what parents need to do if they do fall pregnant, how to take care of themselves and their unborn babies. It's no use just hoping that teenage pregnancy will just go away, it won't.

I think more needs to be done in ensuring services are correctly placed.We are very fortunate in this country that we have universal healthcare. Ante natal care is provided to everyone, but we need to ensure that it is accessible to everyone, and that all mothers understand the importance of keeping up their appointments, and following the advice given, particularly in relation to lifestyle factors. My own hospital's maternity and special care unit is closing. This unit is in the heart of a socially deprived area, and in fact my town, Bury, has one of the highest uses of crack cocaine of any town in England. By removing services, and centralising them, we make it even harder for people living in poverty to access them. We also need to make services more relevant, more accessible, and to reach people where they are at, both physically and economically.

I feel strongly that we need a follow up programme on the BBC explaining the causes of premature birth, and addressing specifically how we can reduce the incidence of premature birth, and ensure that every child is given the chance to grow up healthy and happy, and to prevent the heartbreak of having a baby born too small, too soon, too sick.