Tuesday 30 November 2010

Here is the News

Joseph has a cold. He's been poorly since last Thursday. I still have the "PPP" (premmie parent panic) every time he gets a respiratory infection, even if its just a cold.

I remember when Joseph first came home, I was very nervous, and didn't really know what to expect in our first year. The very kind neonatal outreach sister visited us every couple of days. On one visit she warned me that Joseph would be in and out of hospital all year with respiratory infections, and back on oxygen.

We had one close call at Christmas. On Christmas Day Joseph was dopey and not quite himself, but by Boxing Day was piled in the car to Accident and Emergency at a hospital near my in-laws English home in Great Yarmouth. I was terrified, his breathing was dreadful, he was fighting for each breath, and I was absolutely certain I'd be seeing the New Year in at a hospital far from home. As soon as we arrived our "passport" flashed on the screen and we were seen immediately. Joseph gets priority at our own hospital, and I was suprised to see that this followed us to Great Yarmouth.

A lovely nurse was taking Joseph's particulars and put the sats monitor on his foot, I was watching in earnest as the numbers started going up, I whispered "come on Joseph aim for 95", the nurse kinda looked at me as he said "um, how do you know what I am looking for". I grinned and he said "oh, he was prem, you've done the first part of the degree then!" with a cheeky grin.

As it turned out, it was just a cold, it sounded scary, but Joseph was fine. The doctor who saw us was very confident that Joseph did not require anything other than a Ventolin inhaler as needed, and plenty of cuddles, that I could handle!

And that has been our sole brush with readmissions, no one at our own hospital can quite believe our luck. I think the key is that Joseph was on CPAP for a long long time, longer than most other 27 weekers I know. Shall I explain?

When a premature baby is first born, their lungs are underdeveloped and they usually can't breathe on their own. The first step is mechanical ventilation, they are on a machine that does all the work for them. The next step is CPAP, continuous positive airway pressure. This machine helps by keeping the airway established with air, but the baby has to do some of the work themselves. Cycling CPAP is a term used when the baby is given periods of time off CPAP to get stronger, these times off are important for improving lung strength.

CPAP is also the machine used by people with Obstructive Sleep Apnoea. Joseph was ventilated for only 15 hours, which is somewhat of an achievement given his size as well as gestation.

Joseph took a long time to finally kick the CPAP habit, and it was expected he would be discharged on home oxygen. I hadn't really thought too much about it, I knew lots of premature babies went home on oxygen, and then weaned off at home, I was so keen to get Joseph home where he belonged, I didn't worry too much about it.

I am still cautious about colds, at the first whiff of a cold I pull us out of circulation. Joseph has had about 5 colds since discharge, an ordinary baby gets 12 - 14 a year!

The only really bad thing about this current cold, is that Joseph has decided to share it. Ugh.

Saturday 27 November 2010

A New Story

"How old is he?" I've always struggled with this question. I am not sure how I am meant to answer it. Joseph's birthday is the 8th May, but it should have been the 7th August. 3 months. That's a long time to a 1 and a half year old!

When you have a premature baby there are three ways to refer to their age. When they are little the doctors use "gestational age", and refer to the baby in weeks, from their date of conception. For example, he's 34 weeks now. Later on the term is "actual" so at the moment Joseph's actual age is 18 months.

The final term is "corrected", where the months or weeks of prematurity are taken off. So Joseph is 18 months, but 15 months corrected. Whenever I give someone Joseph's corrected age someone usually rumbles me! Like at baby group! (Its often easier with fellow parents to give Joseph's corrected age). Or the little voice in my head squeaks "liar liar". For what its worth the paediatrician and the outreach worker at special care think I should use his corrected age. My Health Visitor thinks I should use his actual, which causes a lot of confusion and annoyance on my part.

It's a really pertinent question for me, and I wonder if other mums of premature babies, particularly premature older babies feel the same?

I try not to read development books or lists of what an 18 month old should be doing, as it is quite depressing. I looked at one just now for this blog entry, and I it makes it even more pertinent to me that I need to answer this question about age, for myself. The very first thing on the list, that thing that for now eludes my child.... the dreaded W word.

Is able to walk regularly and stop safely, without sitting down quickly

Yeah, well, is not able to walk at all, thanks list. But moving down the list, Joseph does a lot of things on this list, and more. His language skills are very good, his other physical skills are excellent, he can climb on to a chair and sit down like a grown up, he can (if he really really really wants to) use a spoon. He recognises himself in a mirror, so in lots of ways Joseph demonstrates abilities that reflect his actual age. Providing he is sitting down!

Perhaps a good thing, but I haven't found a nice neat 15 month old developmental list. I did find a depressing video, which really highlights why I don't do this. The only similarity with this little boy is the hair its so similar to Joseph's the way it sticks up like he's communicating with the mother ship! However this child is confidentally doing that walking thing!

Which brings me to the point I think that I'm making here, is that even if I do correct the 3 months off his age, its not really helping me, as a 15 month old (well a normal full term one that is) is expected to walk. So its not really going to help with the conversations I find difficult, that is, with acquaintances and mummies at baby group.

I have grown tired of our old story. Its a good one, and its an interesting one in many ways, but to me now, its becoming old, tired, and we need a new story now. The prematurity story is a bit like the dark period of Australian history. Deeply relevant, in lots of ways, and not all bad, it's shaped how Australia is today, but there is a new story that is emerging and growing over time.

And that's what we need, a new story that tells of Joseph how he is right now. That supports him, and celebrates him, that concentrates on all that he is, and all that he does and does not make excuses or gives reasons.

And I need increased confidence to tell that story as it is now, not as it was.

Thursday 25 November 2010

Death Stare

Yesterday Joseph and I went on a one bus, one tram, two train adventure into Liverpool. It was a fantastic day, busy and tiring. We met up with some good friends, and had sandwiches, chocolate brownies and blueberries.

Unfortunately public transport + toddler does not always work as well as I would like. On the way to Liverpool on train 1 Joseph melted down. He just cried and screamed and threw things. What can you do? I held him, talked to him, sung to him, and he continued to go mental.

Most people smiled in solidarity, a couple of people even spoke a few encouraging words.

But one old lady glared at me. She walked right to me and glared at me, staring at my awful, screaming child. It brought to mind that heartwrenching scene in Mash where Hawkeye, going mad after too long in the wilds of Korea, witnessing the horror of war, is on a bus and a baby is screaming, which he thinks is a chicken squawking, and the baby is smothered by its mother, in order to make the noise stop.

What did this woman want me to do? And if she had a secret to stop the barrage of noise, why didn't she share it? I think the fact I was calm and not shouting at him made her worse. She shoved past us and went and stood at the door of the train, willing it to go faster and pull into the station so she could make her escape. Once she was gone, Joseph shut his eyes, and went to sleep. For the last 3 minutes of the journey.

It wouldn't have been so bad, but on the way back, the exact same thing happened, although it was worse, in a way, as we hit peak hour. I was sat in the cold hallway in the bike rack with the pram, and Joseph in the mei tai. He happily ate blueberries for about 20 minutes, and then it started, the screaming and crying. There were a couple with a young baby (asleep in its enormous pram, giving me even less room in the bike rack), they were doing a dodgy deal on two mobile phones attempting to buy an illegal pit bull type dog (amazing what people will talk about on the seemingly anonymous public transport system) and were, in between heated quick calls, giving me death stares.

In the end, Joseph put his head on my shoulder, still screaming, and I got out the only weapon left in my virtual aresenal. Yep, the song. The when all else fails song. Which I sang. Over and over again. And eventually, he gave in, and fell asleep. For a blissful hour!

So I do apologise, should you have been travelling on the Liverpool - Nottingham 16.50 service last night, should your ear drums have been assailed not only by my screaming child, but my rather dreadful singing voice. Sorry.

Tuesday 23 November 2010


I have no doubt that patient notes have been the subject of many lectures, studies, and projects within hospitals individualy and the NHS as a whole. How to make them accessible and readable. I can only comment on my own experience.

When I was discharged, I was given my notes to take home, for the community midwife to use, until she discharged me, at which time they would go back to the hospital to be archived. I could not believe the size and volume of my notes, well over 100 A4 pages, from the day of my admission until the day of discharge. The handwriting was at times terrible. They were not in order. Oftentimes notes would say "written two days late as busy on shift". What use is that for the next person, especially when dealing with a complex patient situation?

I found my hospital admission, once Joseph was delivered, to be an incredibly difficult time. I felt that there was no communication between the ante natal ward, and special care. I felt my care was disjointed and problematic. I felt that if people had just read my notes, that life would have been so much easier, for them and for me. But who has time to read through loads and loads of handwritten notes, looking for the pertinent points. And what if the notes just aren't updated? Or inaccurate?

On the Tuesday, day 5 of Joseph's life, I had a really tough day. He was crticially ill, I had post natal blues, his teddy bear got stolen from my room, I was a complete mess. My husband's beloved football team were playing that night, a very important game, and I had said he was to go and watch it at the pub, but that was the day I needed him the most. I rang in tears and he came straight down before the game. The nurses and midwives gathered, to discuss what best to do. It was decided I needed a psychiatric evaluation. I didn't care, I just wanted someone to just take all this away, and make me normal. And give me back my pregnancy, or at least give me my baby.

I had my evening meal and went to special care, and spent time with my poorly baby, just sitting there, staring at him. From the chest up he looked fine, peaceful, cast your eyes downward, and he looked a mess, his tummy distended, the skin around his belly button turning black, he looked sick. And I was scared. My husband came in at once jubilant and despondent. His team had won, signalling Burnley's rise into the Premiership, but as he entered the room he could see his baby was sick, and his wife as a mess.

We went and had a cofee together at the beautiful cafe coffee machine outside special care and the delivery suite. We held hands. I cried a lot. At 10pm he kissed me good night and I took the long walk back to my room (my husband wasn't allowed in my room after 8pm at night who knows what we might have got up to!)

As I got back one of the kind, younger midwives came up to me and said "your having your psychiatric evaluation later, it will probably be around midnight, what would help until then?". I looked at her with huge puppy dog eyes and said simply "a bath". Well the ward mobilised, a nice big bath was run, the best towels obtained, and a nurse gently helped me in. I lay there patting my belly, and said goodbye to my pregnancy, and just howled a bit more. I really wished at that point I could just disappear down the plug hole.

I managed to get out, dried and dressed, and went back to my room. At midnight, sure enough, the knock came and a doctor came and spoke to me. She asked me all sort of questions, which I answered honestly but shortly. I just needed to get some sleep. She then said "right the problem is your methyldopa (for high blood pressure)" what we need to do is take you off that and put you on Labetelol, and you will start feeling better". My blood pressure started to rise, my face filled with anger.

"You haven't read my notes" (which was to become my catchphrase). She looked startled. "I have a history of reactive depression, methyldopa is contraindicated for depression, its true, but why wasn't I put on Labetelol?", she glanced at my notes, looked at me, and said "I'm sorry, I don't know." I felt relieved and annoyed, relieved she hadn't tried to wriggle out of it but annoyed that I seemed to be the only one who had a grips of my medical history. "I am a severe asthmatic, myself and Dr P the consultant felt that the risk of depression was better than my asthma being out of control, and Labetalol is contraindicated for asthmatics".

The doctor put down her folder, put her arm on my shoulder, and apologised. "You are in a time of great stress, you are very intelligent, you know what is going on, and you need us to be part of the solution, at the moment I feel I am part of the problem, and you need a good nights sleep."She left, I cried some more and I finally drifted off to sleep.

The Delivered - Part 3

This post really continues on from part 1 here. Over the last few weeks I have been thinking more about what had happened to me in the days after Joseph's birth and what could have made it better.

On the Sunday, after my somewhat ill-fated breakfast, I tried to settle down with a book. I couldn't think or concentrate, my head was all over the place, and I felt lonely. There was no one to talk to. Visitors weren't allowed on the ward until 12, so my husband had to stay home. There was no communal sitting room and the cafeteria was an inconceivable distance away in my current condition.I had been advised not to go to the unit that morning as Joseph was having a number of x-rays and other procedures done. So I sat.

A midwife came in to do her notes and check up on me, see how my scar was doing etc. As we were talking she looked at me and scowled.

"You are not wearing a bra", she hissed. "Um, no", feeling like a naughty schoolgirl. "My milk has come in and they are huge, my maternity bras don't fit." She went a funny colour and started to rant "We tell you mothers all the time you must go and get fitted before delivery, you'll never learn will you, its so important to have a well fitting nursing bra".

How I didn't cry I will never know. I grinned "yes, you are right, I never should have agreed to a section at 27 weeks until I had my bra sorted out, how deeply inconsiderate of me. You know what, they should have a Marks and Spencer bra fitter in recovery shouldn't they?"

She barked "well you should have got your mother to fetch you one." At that point tears did sting my eyes. Not only had she reminded me of how awful this situation was, but that comment just reinforced that I was completely alone. My mother was in Australia, and if she thought for one second I was sending my husband out to buy me a bra, she could go and get me one herself!

She made her retreat, muttering an apology. I sat down and had a little weep. Then there was another knock at the door.

A fresh faced woman came in clutching a plastic bag. She was the Bounty lady. Had I known more about it, I would have told her to go away, but she made it sounds like I had to talk to her. She started asking loads of questions about my baby, and even pretended to care, all the time pushing this marketing material at me. This bag contained loads of leaflets and samples, all things of no use to me at that point. She wanted me to sign my name and give my details, and of course, being gullible, and just wanting her gone, I did sign her paperwork. Cue many annoying pieces of marketing material and the odd phonecall in the months to come.

But worse, when she was gone. I opened the bags. I should have known better. As I got out the enormous nappies that could have been a sleeping bag for my tiny little baby, I just cried and cried and cried. I couldn't stop.

It was all so unfair, I shouldn't have to deal with these people, with their agendas and prejudice. I didn't need leaflets telling me how to latch my baby, or enormous disposable nappies supposedly for newborns. I didn't need a nursing bra, millions of women manage to effectively feed their youngsters without them.

All I needed were some friendly faces, a cuddle, my husband. Most of all, I needed my baby.

Friday 19 November 2010


Its been a tough week. I found the Fight for Preemies Day a lot more emotional and heart-wrenching than I ever expected. It really brought it home how many families have been through, and are going through, what we have, and how hard it is. The journey through NICU is one I wouldn't wish on anyone. For the past few months I have been feeling stronger and more positive than ever, and had slight setback this week, feeling a bit down, and traumatised again.

And then, we had the flood. Not a massive one, just turns out that the pipe that connects my sink and washing machine to the outisde world was held together with a little big of concrete render and newspaper! The newspaper perished. Unfortunately it was too wet and soggy for me to look at the date on it!!!  So we had that to deal with.

And then, if that wasn't enough, my phone wasn't working. Now with the interweb and mobile phones it shouldn't be an issue, however this week is chemo week. My mum has chemotherapy on a Thursday and is often sleepless and as she is in Australia and I am here, then its nice for her to be able to ring me in the wee hours of the morning.

So yesterday was an admin day, sorting out the plumber (cute, by the way), the phone (easy fixed, problem at the exchange apparently) and talking to mum (as well as can be expected). So today I decided Joseph and I needed a treat.

We took a tram to Manchester, where they have traditional European markets. It gets bigger (and better) every year. Last year we missed it as Joseph was small, and I felt the risk of picking up bugs from the crowded populace was not worth taking, and the year before I was pregnant. I still went, but no gluhwein for me! And I avoided a lot of the other food as well, just to be on the safe side.

Joseph had a brilliant time, taking in all the sights, and eating! We saw an old friend who runs a fruit stall and he gave Joseph a banana, which he ate. Then off to the Dutch section and Joseph had an Olliebollen, a dutch donut with raisins. Then we shared a huge Wiener Schnitzel and potatoes. Then he had a skewer of strawberries, marshmallow and grapes smothered in chocolate. He ate everything! Not bad for the child who would never eat!!!

And then we came home, he had a nap, woke up, and then started again, 4 fish fingers, a plate of chips, peas and corn, finished off with a ginger biscuit (homemade, tonight was a helicopter! Why don't I own a gingerbread man?)

It was lovely have some mummy and son time, no interruptions, no stress, just lots of lovely sights, sounds and of course, food!

Wednesday 17 November 2010

To My Little Fighter

If you are joining me today for March of Dimes Fight for Preemies Day, welcome, and I look forward to reading many blogs today, celebrating the special tiny lives that have touched us.

Dear Joseph,

When we found out we were pregnant we were stunned, and delighted. I'd had lots of problems, which I'll tell you about when you are older, but I didn't think I would ever be blessed with a baby.

It was January 26 2009 when I saw you for the first time, just 12 weeks old, you were moving around all over the place, you were tiny, beautiful and perfect. I could see your spine, your arms, your legs, your head, I loved you so much and couldn't wait to meet you.

But, my darling, from 16 weeks I knew there was something wrong. I felt like I was trapped in some sort of movie, no one believed  me. I wonder if you heard me, wonder if you remember, that every day in the shower I would talk to you, put my hand on my belly and say "get ready to bail, my belly is turning into a pressure cooker, get ready to fight".

At 27 weeks, I was told you were to be delivered. I was scared. I talked to you. Do you remember? I am sure you heard me. I put my hand on my belly and I said to you "darling child, if its not your time, just go. Don't wait, don't hang on, if you need to leave to go to your home in heaven, you leave, we'll be ok your daddy and I." I felt you give me the most enormous kick I had ever felt. I am sure you were thinking "just shut up mother, I'm ready".

Two days after you were born, I was able to see you properly, I could walk a little, I wasn't as sick anymore, and I watched as the doctor examined you. You had a board on your hand to keep all the tubes in, they used them to feed you and give you medicine. You hit the doctor around the head! Hard! Startled, he took a step back and said "well, you have got a fighter there!"

I hope you don't remember this but on day 5 you got a very bad infection, they told me you might die. I was very scared, and I loved you so much more by then, if that was possible, I couldn't bear it. I spoke to you for an hour. I told you what the doctors were trying to do, and how you had to help the doctors put the line in, to show them the right way. They had to put a tube in your hand right down into your tummy. They had tried three times, but couldn't get it into you.

And on the fourth time, it went in. The doctor was amazed. I wasn't. I knew you were listening to me. I knew you could feel my love. And I think you loved me too.

As our time went on in the hospital, we talked more and more (ok I talked, you listened), we fought together, we laughed together, we sang together. When I was finally allowed to hold you kangaroo style, I felt whole again. I felt like your mummy.

It seems like a lifetime ago, and only yesterday. Well over a year has passed since you came home. You have grown in so many ways, you are strong, you are funny, and you are loving. I am so priveleged to be your mummy.

Most of all I am so proud of you for how strongly your fought in your time in hospital. You are a fighter, and now its my turn, to fight for preemies, so that mums like me can get their happy endings, or better still, never have to know the pain of having a baby born too soon, too small, too sick.

All my love


Monday 15 November 2010

I'm no dummy

When I was pregnant, my husband and I would chat about things that we would and wouldn't do when we had a baby. We both agreed, that ideally we wouldn't use a dummy. I hadn't had one as a baby. On the other hand, Corey had had the awful memory of his dodi being taken away. He had had a number of awful orthopaedic procedures, and back in the "olden days" dummies weren't permitted in hospital. His admissions would last for weeks, and he would have to go through the trauma of handing his dummy  back again and again.

Once Joseph was born, I knew that he would need a dummy. In the care of neonates a dummy is important, to help develop the sucking action they should be practicing in the womb, and they also help maintain air flow when CPAP is being used. (I won't go into it here, its probably worth a post of its own)

So at three days old one of the nurses asked me if they could introduce a dummy, my husband was horrified, and a quick run down of why it was important was given by the nurse. Delicately, the nurse took the smallest dummy imaginable and introduced it to my baby.

Can you believe a 1lb 7oz baby (and by then he was even smaller having lost weight) could be opinionated and stroppy. Well, the child must have been listening in utero as he absolutely and steadfastly refused it. We tried many times, and all agreed that it just wasn't worth the stress to the baby, the mother or the staff!

A couple of weeks after discharge, Joseph developed a hernia, in his groin, known as an inguinal hernia. One awful night his scrotum on his left side had swelled up, he couldn't poo, and he was in agony, so we went to our local accident and emergency department at the hospital. Once there, a doctor came to examine him. She took one look at me and said "where is this child's dummy?", and I explained he didn't have one.

Well, I have not had such a dressing down since I smeared paper glue over my desk in year 7. She went mad "do you not realise how important dummies are in the care of neonates? He is distress, he needs a dummy." I explained that really, it was Joseph who needed the explanation not me, as he always had rejected them. "Rubbish" she said, basically saying my prejudices had got in the way.

Being traumatised by this time, I went home crying that I was harming my child by not giving him a dummy. The next day I went to the pharmacist and I bought cherry dummies, I bought flat dummies, I bought tiny dummies, and over the coming nights I tried to introduce one. Every time, Joseph took it, did three sucks, then launched it!!!! Its quite amazing how a still small baby can launch an object a very long way.

I thought a dummy was meant to be a comfort, but this was becoming a battleground! In the end, I just gave up.

Funnily enough, when Joseph was just over 6 months old he went back into hospital for his hernia surgery, and I took some dummies "just in case", and used them!! He sucked away quite happily when he was in pain and discomfort, and just as quickly gave up the habit.

Joseph now uses a blanket as his dummy, he spends ages looking for "the right corner" and sucks it to an inch of its life. Despite frequent washes, it always manages to look tatty and disgusting.

But he's happy!

Sunday 14 November 2010

Universal Child

I heard this song for the first time tonight, On Strictly Come Dancing. How apt it is for all our babies born too soon, too small, too sick

Universal Child - By Annie Lennox

How many mountains must you face before you learn to climb.
I'm gonna give you what it takes, my universal child.

I'm gonna try to find a way to keep you safe from harm.
I'm gonna be a special place, a shelter from the storm.
And I can see you, your everywhere, your portrait fills the sky.
I'm gonna wrap my arms around you, my universal child.

And when I look into your eyes, so innocent and pure.
I see the shadow of the things that you've had to endure.
I see the tracks of every tear that ran ran down your face.
I see the hurt, I see the pain, I see the human race.
I can feel you, your everywhere, shining like the sun.
And I wished to god that kids like you could be like everyone.

How many tumbles must it take before you learn to fly.
I'm going to help you spread your wings, my universal child.

I can feel you everywhere shining like the sun.
And I wished to god that kids like you could be like everyone.

Saturday 13 November 2010

The Delivered - Part 2 - a happy post

In the UK the common practice 6 - 8 weeks after you have had your baby, is the post-natal check up. This normally happens with your GP and/or practice nurse. I had a laugh with my GP, I'd gone to see him at 2 weeks post natal to clear up some paperwork and to discuss my medications for the blood pressure. He said he'd not be allowed to do my check, on the basis that he was a man. I was laughing very hard, my GP is a trained obstetrician!!! And its not like anything happened down the "lambing end" so he wouldn't be required to even have a look down there!

However, if you've had a very complicated delivery you might be offered a follow up with your consultant at the hospital. I was asked to have both. So 7 weeks after Joseph's birth I was called for my consultation with Dr P, the head obstetrician. Joseph was, of course, still in hospital, but by this point was doing very well, just small, and learning to feed.

I was asked to go to ante natal, there isn't a post natal outpatient waiting room, so I had to sit with the pregnant women, which was fine, by that point I used to be a bit "other", a bit "different". My appointment time was 9.30, but it was a running joke amongst myself and my friends that this is a "required turning up time", you could be seen at any time. You could probably happily add an hour!

So I am sitting there, with my husband, quite chirpy having had an early snuggle with my baby, and who should appear but Charlie, the big Ghanian assistant doctor during my section. He trotted over and scooped me up for a big hug! We had a quick catch up, then the colour drained and he said "um what are you doing in ante natal?" I grinned and said "its ok, I've not got knocked up just a post natal check with Dr P" relieved, Charlie grinned and went on his way.

So then, who should appear but Dr A, she handled my medication and blood pressure issues post natally. She also had seen me antenatally and she had felt very strongly I was a good candidate for pre eclampsia. I had, at some drug induced hazy point, declared my undying love for Dr A, to which she replied with good humour "I love you too Kylie!" She came to speak to me, her face cloaked with worry "as ever, a delight to see you, but what are you doing here!", again I said "post natal check, because I'm complicated!", she too gave me a hug and then disappeared, the relief, again, quite obvious.

Still waiting, yet another doctor appeared, this one, Dr Abby, had not been involved in my care, we'd just got chatting in the corridors. He was drop dead gorgeous, about 26 or so, tall, dark and good looking. He saw me waiting, and positively sprinted over, gave me a massive hug, and a kiss! (by this time the pregnant ladies were all in stitches wondering how I'd become such a local celebrity!), and he said "good lord woman, this better be a post natal check, we'll all have high blood pressure if your pregnant again!"

One of the things I learned during my time in hospital with Joseph, was just how caring the doctors are, and how much they invest of themselves in each complicated delivery. I was amazed the number of times a doctor who had treated me would come up to me in the cafeteria or outside the neonatal unit and ask me how things were going, and more importantly, how I was doing.

I found the community of the hospital, and the care of each and every person, comforting and warming. Even the cleaners knew me my name, and would smile when they saw me.

And now, when we go back for follow up consultations I see a lot of the same faces, and see the delight when they catch a glimpse of my health, smily toddler.

This post is, however, for me, tinged with sadness. Our local maternity unit and neonatal unit has been marked for closure, despite reprieves from time to time, it looks like it will close next year. Women will have their babies in a large, shiny hospital. But it would be a such a shame to lose such a close knit community, which, truth be told, played a huge part in my emotional and physical healing.

The Delivered

Image courtesy norfolkdistrict FlickR.com

Joseph was born on a Friday, I had to spend Saturday in the delivery suite hooked up to all my lovely monitors and catheters, until Saturday afternoon when my lovely Dr K finally said "right, catheter out, lines out, you can go up to your room". I was taken to ante natal, into a private room which would be my home for the next 6 days. There are three sorts of people in our antenatal ward. Expectant mothers with complications of pregnancy, expectant mothers with very serious social problems who need to be looked after, and "the delivered", whose babies cannot be with them, but they are not well enough to be discharged home.

It isn't easy being a delivered mother at the best of times, but when your baby is not by your side, its pretty horrendous. Biologically you are going through all the things an ordinary new mum is going through in that immediate post natal period, that period of elation, followed by crushing lowness (baby blues is such a ridiculous term, its more than feeling "a little blue"), your milk coming in, the constant feeling of burning and fullness, and the post delivery bleeding, and if you've had a section, the pain and discomfort of your scar.

In our hospital in both post natal and ante natal you are expected to get your own breakfast. Which, if you are a normal expectant mum, or a delivered mummy, is no biggie, afterall pregnancy is not an illness, and post childbirth isn't either.

So on the Sunday morning I woke up early, expressed, and was looking forward to my breakfast. To my dismay it was all served in big containers with cereal, and huge jugs of milk. My hands were bruised and battered, I still had a canula in in case of emergencies. I had just had my heparin injections and my legs felt weak. I wrapped my hand around the jug handle, and nothing happened. I had nothing left. I couldn't even put milk on my cereal, and the tea was served in massive stainless steel pots. There were no staff members around to help.

One of the mums was standing at the trolley, so I asked her if she could help me, which she was more than happy to do. We got chatting, she'd had her baby on Friday too, and she was knackered. She'd been feeding all night, and exhaustion had reached a peak point. She asked when I was due, and I explained to her that I had had my baby but was put in the "room of the delivered" as he was born at 27 weeks, and they didn't want me to be tortured by being surrounded by new mums. I watched the colour drain from her face. She quietly got my breakfast ready and took it into my room for me. I didn't see her again.

Many months later I was at baby group on a Monday. I was, at the time, very teary, always on edge. My post traumatic stress disorder had been identified but wasn't yet being treated, as I was waiting for a psychiatric referral. I got chatting to one of the other mums whose little girl was enormous, lying on her tummy lifting on to her arms, something Joseph at the time, was still 3 months off doing. We talked about our babies birth dates, they could have been twins..... then her face flashed with recognition. She was the mummy who had helped me.

She looked at Joseph with amazement, and then a tear formed in her eye. She said "I rang my husband after talking to you that morning. I felt so bad whinging about how tired I was when you were going to lose your baby." I went white, I started shaking. "I'm really sorry", she continued, "but I thought a baby born that early would die." And whilst that exchange was, at the time, painful, it was positive. She had become educated. That early babies can not only survive, they can thrive.

I still strongly believe that premature delivery and birth is a taboo, almost as much as pregnancy loss. We don't talk about it as a society. In my pregnancy books and magazines, its sometimes mentioned, sometimes there are even articles, a before and after picture, a birth story, but we don't talk about beyond the glowing success stories.

We don't, as a community, and I believe treating professionals don't either, talk about how we deal with not just the babies, but the parents. My husband was treated the same as any other partner in that hospital. He had to go home at 8pm. I was left, alone, in my little room, with my breast pump and my ipod, my baby a ten minute walk away (and for many other mothers its worse, and I've talked before about babies being accommodated many miles away from the mother).

My husband once, in a heated moment, complained about my "premmie crusade" and how I act like I am the only person in the world who has had a premature baby.

That's where he is wrong. Although there are many, many high points on the premmie journey, they do not compensate for the crushing, frightening lows, the hurt and the trauma that carries on, usually for years, that never truly goes away. If 1 in 8 babies are born premature, sick or small, that means 1 in 8 mothers have gone through and are going through this trauma.

I am on a crusade of sorts. But not to say "look at me, I'm special, I've had a tiny baby", but to increase awareness, to impart to others some knowledge of what its like to have a premature baby, and to help all mothers support and care for one another.

Friday 12 November 2010

Having a premature baby - things I'd wish I'd known

I thought I'd do a bit of a lighthearted post today, being a Friday and all!

1. Just how many times people's jaws drop as they say "how heavy was he again? Oh not even a bag of sugar", hence my blog title. It used to drive me mad, but I decided to "own it"! And I like it! More so that its not true anymore, and he looks more like a very big bag of spuds!

2. That there are crazy people out there. Shortly after Joseph came home from hospital this was on television, which I hadn't seen, what new mum has time to watch tv at night? An older lady came up to me in a charity shop and said "lovely baby". I smiled, and said "thank you". The she touched my arm and said "he's not real, you know that, don't you". I'm like "sorry, what?" "I know all about women like you", she said, looking at me full of pity. "Hes's a doll, he's not real". I'm staring at Joseph willing him to fart, cry, poo, anything to get rid of this crazy lady. All of a sudden he blew a raspberry and she nearly fell over!

3. Children will go and get their Baby Annabel dolls and compare them to your baby. And the doll will be bigger. And the kids will be amazed. And you will feel hurt. Draw the line at placing your baby in the Baby Annabel pushchair.

4. People will ask "where do you get his clothes from", and you will roll your eyes as you try very hard not to shout "a shop, where do you think?"

5. People will ask if your baby will be handicapped, disabled, retarded - pick your derogatory term. I would advise you to be quick, to say, um no I don't think so, but have you had that mole checked on your neck recently?

6. Some people will find if very funny to say "well I bet you were relieved not to go to term", or "gosh you got out of that lightly didn't you?" Its up to you how you react to this, I am not condoning acts of violence, but I'm not condemning them either.

7. You will, at times, wonder if your baby will ever grow. You will wonder if your baby will every "do" the next big milestone. People will say "Oh just enjoy them being little, they won't be babies forever". And they are right. Enjoy baby hood, before long, you will be living my life, peeling your child off backs of chairs, off bookcases, and windowsills.

8. You will hear fantastical tales of  your neighbour's cousins milkman's little boy who was born 15 weeks early who is now an astrophysicist. What you do with your tales, believe or disbelieve, yawn, discard is entirely up to you.

9. You will find yourself watching shows about premature babies and worry about the calibration of CPAP taking a long time, or a baby's monitor desatting and wondering why no one is doing anything or worrying that doors of an incubator are being left open for too long whilst an interview takes place.

10. You will be on first name terms with your GP, and on the pharmacists christmas card list.

11. Embarassingly you will bump into people who never knew you were pregnant, and you have to explain. Or worse, people who think you still are!

12. You will get dirty looks as you feed your "newborn" solid food. You will feel like passing them literature on the weaning of premature babies.

I'm sure there are many more feel free to add your own!!

Monday 8 November 2010

Normal service

Joseph turned 18 months today. Its been 6 months since we celebrated his birthday. Its amazing how much has happened in just those six months.

At 12 months Joseph had been sitting for 2 weeks. He could only roll, he couldn't crawl, not even commando. He could manage to eat a rice cake, but not much else finger food wise. He couldn't utter any words at all, but did a fine attempt at babbling!

Now at 18 months Joseph is doing so much more. He can crawl confidently anywhere. He can pull to stand, he can cruise the furniture, and can get from one side of the room to the other surfing different pieces of furniture. He can eat just about anything with his hands, and sometimes, can even mange a spoon!

He can voice his opinions at times, he can tell me when he doesn't want to do something. He can tell me what he wants to wear, and what he wants me to buy. He can say "hello" and "mama". He can come up to me for a cuddle whenever he wants, and its on his terms.

He is such a special clever little boy, and he's amazing.

I am so much better today, thank you all for your messages of support. I think it really helped me just to get my feelings "out there" and to seek support from others. I spend so much time "just getting on with it" and I forget that its ok to say "help" from time to time.

Sunday 7 November 2010

Difficult times

I'm struggling today. Tomorrow Joseph turns 18 months. I really battle with how old to say Joseph is, yes he has been with us for 18 months, but really, he should be 15 months old. And everyone tells me how he has "caught up" whatever that means. I still haven't worked it out. Surely all babies and children are so different that there is no "catch up".  He's still in 12-18 month clothes, and in fact in trousers he's in 9-12 months. He's still on the 9th centile for his actual age.

Joseph is not walking. I know I shouldn't worry. I really do know I shouldn't worry. He is a clever lad. He can climb up windowsills, he can scale up and down the stairs, he can get on and off the bed, there is nothing wrong with him. He just doesn't walk yet. No one is concerned, not until he reaches 18 months corrected, still another 3 long months away. And even then, some children do not walk until later. I was over 2, and my husband was even older.

I'm struggling too because we were planning number 2 baby to be about 2 and a half years younger than Joseph. We'd be trying to conceive around now. And I know I can't go through another pregnancy, that it would be risky too risky, that we may not have the happy outcome we've had this time, and that with a toddler it would be a whole new ballgame. But I can't help feeling desperately sad. So many people are announcing second pregnancies, and I am genuinely happy and excited for all of them, but its hard. It should be me too. Pre eclampsia has robbed me of this, and I am just teeny weeny bit bitter about that. Just a little, because it wanted to rob me of my first born too, and I won that one.

And difficult too, because my mother has cancer. What started as a little lump on a mammogram a few months ago is an aggressive, nasty cancer. My mother has lost her hair. She's been hospitalised with complications of chemotherapy, and she's struggling. She's in Australia, I am over here, and its hard, really hard.

Not long after Joseph came home from hospital, my half sister passed away, having contracted Legionnaires on holiday. And today, I learn her husband has died, from a nasty aggressive cancer. I had only met them for the first time at our wedding in 2008. And now both of them have gone. It just doesn't seem fair.

I feel just overwhelmed, and not sure what to think about and work through first. We have Christmas to look forward to, then not long after I fly to Australia with Joseph for six weeks.

But at the moment, all I have is this mess of thoughts and feelings.

Friday 5 November 2010

Hush Little Baby

A friend of mine posted a link today to some interesting research. One of the heartbreaking things for me when Joseph was in hospital, was hearing him cry. For the first six weeks we were not allowed to pick him up. When he cried every fibre of my being wanted to pick him up, and hold him close, and kiss the top of his head, let him breastfeed until he felt better. But I couldn't. The most I could do was stroke is foot, or do containment holding, which is lovely, but its not the same.

Joseph's cry sounded so different to other babies. He sounded a bit like a cat whose tail is trapped in a door. High pitched, alarming, a noise that demanded action. And now, it would appear that there is a scientific basis for this. No wonder I felt so trapped, and so alienated from my baby when he cried.

I often come across people who have difficulty with their baby crying, particularly when being put down to sleep. Joseph has always been a very independent sleeper. A very close friend of mine, who as best man at our wedding, who has two children of his own, once spent a long time rocking Joseph until he fell asleep, and was most put out when he put him down, that he woke up! Joseph had never been rocked to sleep so he didn't know he was meant to stay asleep.

When Joseph first came home, he felt, quite understandably, very unsettled. Night times were difficult. The flat was too quiet, too dark. No chatting nurses, or clip clopping down corridors, or the beep of machines. Joseph had got used to all that white noise, and to quite a high level of light. The ward was never dark, as babies needed to be visually monitored at all times. I felt very strongly that Joseph needed to learn to sleep in his crib. I would have loved to rock and hold him to sleep all the time, but I felt this wasn't good long term, also he used to get over stimulated and over handled, and I wanted him to be able to retreat to his cot and his crib when this happened.

I read some of the baby care books, and some of the techniques alarmed me. Leaving a small baby to "cry it out" (whatever "it" is meant to be) did not sit well with me. PUPD (pick up put down) was no good for a baby who didn't like to be over handled. So I came up with my own technique.

Joseph's crib was at the bottom of the bed. So at his bed time I'd put him down, and then I'd lie at the foot of the bed, reading a book, or a magazine. He would look over at me every now and then for reassurance, and then drift off to sleep. I didn't hold him or touch him, I was just there. There was no crying, no fear, and after 15 minutes or so he would drift off to sleep. After a while, he didn't need me any more. He would go into his crib, and just drift off to sleep without my presence. I'd like to think it was because that should he need me, he'd know I would be there in a flash.

To me, crying is communication. Yes its loud, and can be frustrating, but this little being is trying to tell us something when he/she is crying. Hunger, fear, loneliness can all be communicated in a cry. And the parent's response is vital, so the baby is secure. A baby who knows its cries are answers, does, in my opinion, become an adult who knows when they speak, they are listened to.

I don't believe you can spoil a baby, but I do believe you can harm them by ignoring their cries. 

Wednesday 3 November 2010

It Takes Two

I will never forget the moment I finally did a pregnancy test in November 2008. I had just booked in for hand surgery for carpal tunnel syndrome, and decided that on the way home from seeing the surgeon to get a pregnancy test. I really, honestly didn't think I was, but didn't want to go under an anaesthetic without checking first.

My husband was home, we were about to have dinner, I popped into the loo, and peed on the stick. "Pregnant" (I bought one of those that had "the word") I couldn't believe it. I exited the loo grinning from ear to ear.

My pregnancy wasn't easy, I felt sick a lot, I felt "weird" a lot. My moods were pretty low, I never felt that confident that my pregnancy would continue, and there were a few rows along the way.  Whilst we dearly wanted a baby, to be a family, we were expecting to be one of those couples that had to try for a long time. We were living in a one bedroom flat, that we owned, circumstances weren't ideal.

I've mentioned before, but when my husband took me into hospital at 3 in the morning the day before Joseph was born, he left me there and went to work, thinking I was just having a "moment" and everything would be fine.

Once things started really kicking off, I saw a side of my husband I had never seen before. He was organised, forward thinking, and very caring. He brought in food (our hospital's meals were awful), he rang people, he fetched me magazines, and personal care items. In a crisis, he was the person to have around.

But as time went on, and Joseph's hospital stay continued, times got very very hard. Sustaining a relationship, caring for a child, recovering from a severe illness and surgery, and dealing with the stress of it all, is very difficult. I resented the fact my husband had to work. Not resentful of him, but angry that his company did not seem to understand what we were going through. We were treated as if I'd had a bouncy newborn and was sat at home with my baby. I was angry that I had to catch buses to hospital, had to struggle every day with exhuastion. Angry that I had to deal with doctors and nurses, with information overload, with attitude of young nurses who seemed threatened by a vocal, assertive mother.  And we were lucky. Joseph's stay was only 10 weeks, many other babies stay a lot longer. But unfortunately that anger and resentment, coupled with post traumatic stress disorder, was very difficult for me to overcome, and I took it out on my husband. Not proud of it, but there it is.

It isn't suprising then, to learn that the rates of divorce are a lot higher for couples who have had a baby in special care. It's something that is referred to quite a lot, however I struggled to find statistics. I know of quite a few couples who had babies around the same time as we had Joseph, who are no longer together.

For some families, the discharge of the baby from the unit is not the end of the story. Many of these babies have long term health issues that require a lot of input from the parents. For some families, finances are so adversely affected by a lengthy special care stay, that it takes years to recover. For others, one or both members of the partnership may be suffering from Post Traumatic Stress disorder. The heightened awareness, inability to "stand down", the nightmares, the flashbacks are very difficult to deal with. And, the additional problem is misdiagnosis. Often it is assumed that a mother, in particular, is suffering from Post Natal Depression, and the treatment is often very different. And in the case of the father, they may not have received any assistance at all in terms of their mental health.

I think as a community we really need to think about how we support families. Bliss strongly believes in treating the whole family, not just the premature baby, but in cash strapped, understaffed units that is incredibly difficult.

I am so grateful to my husband, he is a wonderful father, and a great support to me, and I am glad, thus far, we have survived together.

Tuesday 2 November 2010

The Baby Shuffle

Imagine the scene, you are 27 weeks pregnant, your at work, and your feeling a bit weird, what started as tightenings are now quite severe pains, and they are regular. No, surely not, it couldn't possibly be contractions? Not now? It's too soon.

You decide to go to hospital to be checked over. Your husband has dropped everything and is by your side. One doctor comes in, followed by another, your cervix is checked. You are 7 centimetres dilated. There is nothing they can do, your baby is going to arrive......soon.

Behind the scenes, staff start making calls. They call downstairs. The special care baby unit is full. They call the next hospital "sorry we can't manage babies under 30 weeks". The phone calls continue, and finally someone comes to see you. "I am sorry, there is no accommodation in the local area, we have an ambulance on the way, you are to be transferred to Manchester". You panic, 3 hours drive away. The ambulance arrives and you leave, in labour.

All is well, the baby is stabilised, and progresses well. You live in the local Ronald Macdonald House, your husband has faced the agonising decision and has decided to go back to work. You see him at weekends, he goes all week without seeing the baby. The bills are too high for him to even consider taking unpaid leave.

After 4 weeks the baby is stable enough to return to a local unit, and again the phonecalls start to try and find a cot closer to home. There are days of waiting, of disappointment, and then finally the call comes.

The above scenario has happened to more people than I would care to name. Sometimes transfers are required for medical reasons, the baby has needs that can't be met locally. More often there is just no room at the inn, and the unit is at capacity. I'm not a doctor, or an administrator. I have no idea what the answer is, and I doubt that the need for transfers could every be elminated. But its heartbreaking. Imagine in that scenario if there were older siblings? What if the mum had triplets and the babies had to be split? It happens, it really does, that babies cannot be moved together and are in seperate hospitals.

In our case, we weren't transferred. I can't tell you how grateful I am that our local hospital pulled out all stops to accommodate us. I do know that decision meant that other babies had to be transferred to other hospitals.  

What is known is that units are understaffed, there is a shortage of neonatal nurses. If this need could be met, more units could run at capacity and prevent some of these transfers. I hope there is an answer, and a response to this problem.

Too Tight to Mention

Having a baby puts a financial strain on any couple. In the UK we are lucky to have Statutory Maternity Pay. In normal course of events you can choose when you start maternity leave, when you commence this you have 6 weeks at 90% of your salary, the remaining 33 weeks are a fixed rate of £124.88.

However, if you have your baby prematurely, maternity leave commences as soon as your baby is born. So, in my case, I was planning to start maternity leave 4 weeks before my Estimated Due Date, but instead, had to commence it two months early. That's a lot of money to lose through no fault of your own.

In addition to the maternity leave kicking in, there is the problem of paternity leave. In the UK fathers are entitled to 2 weeks paternity leave (at a similar rate to the SMP). Now once the baby is born prematurely, there is a problem, because do you want to use your paternity leave to support the mother of the baby and visit the baby in hospital, or do you want to keep hold of this until the baby comes home?

Now if losing out through maternity pay isn't enough, there is a whole new set of financial problems when your baby is in special care.

In its Baby Report that I have talked about in my previous post, Bliss have produced an estimate of additional costs when a baby is in special care.

  • Travel: £400
  • Food: £240
  • Accommodation: £110
  • Childcare: £100 (this is important if the parents already have other children at home)
  • Car park: £125
  • Loss of earnings: £1260
  • Other: £565 (including phone calls, premature baby nappies, breast pumps etc)
So, not only has the couple lost an income (sometimes both) they are now faced with a whole raft of expenses that they weren't expecting.

And I know it sees so trivial in the grand scheme of things but items for small babies are dearer than for normal ones. The micronappies we had to provide never go on offer. Only Pampers appear to make them. I was told Tesco do them, but our local Tesco (which is a big one) refused to stock them, the nearerst stockist was 15 miles away! And whilst I agree with the principal that the baby is yours and you should be responsible for its expenses, at a time when money is tight, buying nappies for a baby who shouldn't even be born yet, is just another added expense and more money to find, and another reminder that the situation in which you find yourself is not normal.

I really struggled with meals. I didn't want to spend money on hospital food, but we didn't even have access to a fridge to put sandwiches in (and it was high summer when Joseph was on the unit) The cafeteria was busy, and expensive. Despite just about being staff members, we weren't eligible for discounted meals, a 20% discount would have helped enormously. I tried to cut lunches and take them in but it wasn't always easy, I was expressing, travelling nearly an hour each way, and recovering from a c-section. Sometimes it just didn't feel there were enough hours in the day.

I had to catch buses to the hospital. Our hospital provides free parking for long stay patients, but there is no help with public transport. A 28 day pass cost £60. Joseph was in for 76 days, albeit for 10 of these in total I was in hospital with him. My husband was not permitted time off work, when I was criticially ill in hospital and Joseph was suffering from NEC and very poor  indeed, my husband had to use annual leave for a week, then return to work, leaving me to find my way to and from hospital on my own. I don't drive, but even if I had been able to drive, our insurance wouldn't have permitted me to until six weeks post c-section.

It was a very hard time for us, and we were incredibly lucky, due to my job and my husband's job we had private health insurance, and we got a rebate for having to be accommodated in an NHS hospital as there was no private facilities available in our area. So all the costs we laid out were covered by this payment, albeit some months after discharge, however we were fine.

But most families do not have this sort of insurance, and in fact no one in my unit had heard of NHS cash benefit.

I am not sure what the answer is, but I do think the system of SMP starting once a baby is born is unfair. I do think if this is the case, their should be some financial provision for parents in this situation. I have heard some terrible stories of families who have lost their homes, or had County Court Judgements, and are still picking up the pieces years afterwards.

Tomorrow I will talk more about support for families and the sort of strain families are under in these circumstances.

The Chance of a Lifetime

As most of you will know, Bliss is a charity close to my heart Bliss supports parents and babies who are born too soon, too small, too sick, not just premature babies, and baby that needs special care. I first heard of Bliss when I subscribed to a little magazine called Candis. It's a little like the Reader's Digest, but it supports charities like Bliss (it also has very good interviews and recipes which is why I subscribed!) Every issue though, they did a feature on Bliss, and I would marvel at the small babies, and the amazing work Bliss does. Bliss does two things, it provides information and support to families and it campaigns on behalf of  the NHS's smallest patients.

I used Bliss on a few occasions when Joseph was in hospital. At times I didn't understand the terminology being used and the implications of what was being said, and because of my self imposed ban on Googling such things, I would ring Bliss. I also used its Parents 4 Parents services, where I was put in touch with a mum who had had a similar experience to myself. It was then I started becoming very aware of the postcode lottery and how variable care is depending on where in the country you happen to have your baby.

Today is the release of the annual Bliss Baby Report, which you can read in its entirity here. It makes for interesting, if somewhat unsuprising reading. There is a chronic shortage of nurses, experienced neonatal nurses. The shortfall is over 1 000. Now I have first hand experience of how wonderful these nurses are. It takes a special sort of nurse to manage these very small babies. I also have had first had experience of what happend when there are not enough nurses on the unit.

The report also talks about units being over capacity at times, or shut at times to new admissions, both of which happened on our unit whilst Joseph was there.

This is a time of great economic hardship nationally, and the NHS has a lot of demands and pressures upon it. However this shortage is not a new thing. Babies cannot expect the same level of ITU nursing care as a child or an adult. A ratio of 1:1 is the benchmark for Intensive Care Units for everyone regardless of age, but for premature babies it often does not happen. I have to say though, in my experience, Joseph did, at most times, have 1:1 care.

The other thing that is clear from this report is the pressure and strain families are under when they have a child in a special care baby unit.

My next two posts will explore the financial aspects of having a premature baby, and the practice of transferring babies.

Monday 1 November 2010

The Home Straight

This weekend something tragic happened, a woman lost a baby, at 6 months pregnant (probably around 26/27 weeks pregnant) That woman is Lily Allen, a well known British singer. She had been photographed with her bump on show, smiling, bubbly, glowing. But today, she is grieving. I hope her baby boy is in peace, and that Lily Allen and her partner can finds solace and healing.

What interested me today were the comments on Twitter and on a pregnancy and baby forum I visit. Many people said "I thought after six months you were home and dry".

The third trimester, in development terms, is fairly boring. The baby has everything it needs in terms of organs, and the third trimester is a time for growth and laying down fat stores, and to prepare for the journey ahead and life outside the womb.

However the third trimester is still, for the developing foetus, fraught with risk. The mother may develop pre eclampsia, the cervix could be incompetent and fail, membranes can rupture prematurely, the placenta can malfunction. The mother could be in an accident, or struck down with an illness.

Whilst most pregnancies are "boring and normal" albeit uncomfortable towards the end, there are pregnancies that remain fragile right up to that moment of birth.

Whilst I wouldn't wish anyone to suffer a loss, especially so late on in their pregnancy, I hope if anything comes out of this, it is that people are more aware that babies do pass away late on in pregnancy and we as mothers need more monitoring, more care and their needs to be continuing research into pregnancy problems, and continuing advances in medical care.