3 years ago today

Today’s post is quite a long story about the birth of my eldest son, Nathan.  *WARNING* this contains details of birth and surgery, so don’t read if you’re squeamish.

I meant to post this on 1st May, however 2 children and a lot of chocolate cake conspired to make it a late night posting.

Three weeks ago today I was lying in our local hospital after my 9.58am Csection to deliver Samuel.  When he was born he was breathing, healthy, and we had several hours of skin to skin cuddles.  After a couple of hours he was starting to feed from me, and we were able to cuddle him, dress him, kiss him and smell his lovely baby scent – he was everything a newborn should be.

Three years ago it was a very different story.  Nathan was born naturally at 2.34pm, but that was the only natural thing about the whole process.  At this time three years ago we were at a hospital miles from home.  I had been through surgery myself following complications at the birth.  Nathan was in the neonatal intensive care unit (NICU) surrounded by a team of doctors and nurses, fighting for his life.  This is the story of his birth:

We were lucky enough to fall pregnant naturally in late 2008.  My due date was 20th August 2009.  Our baby would be the first grandchild on both sides of the family, and we knew everyone would be very excited.  We decided to tell our families over christmas, a lovely time to share happy news (and I knew there was no way I’d be able to avoid alcohol for the whole festival without someone guessing!).  Our 12 week scan came and went, and all was going well with the pregnancy.  I was working full time, I felt absolutely fine apart from a little morning sickness, and I was even still attending the gym twice a week although I’d given up high impact things like running in favour of walking uphill or cross trainers that wouldn’t bounce the baby around.

Our 20 week scan was actually done at 21 weeks.  We were looking forward to it – to seeing our baby again and to making sure he or she was healthy as far as the sonographer could tell.  We decided against finding out the gender, we preferred to have a nice surprise. The scan showed no problems with the baby at all, and we got some lovely pictures of the face in profile. At the end of the scan the sonographer mentioned that something was a little unusual, that my cervix looked a little short, and that she would just check to see what the doctor thought.  The obstetrician came in to consult and I explained that I’d had a dodgy smear test a few years before and had a loop excision to remove the bad cells.  I remember at the time they had warned me there was a very small chance that it could cause premature labour, but they had reassured me that the amount removed had been so small that in my case it should not have been a problem.  The obstetrician could tell I was nervous and decided to play things safe by booking me a follow up scan in 2 more weeks.  His attitude was definitely one of reassurance, it seemed to me that he was booking the scan to keep me calm rather than because he thought I needed one.

So we carried on with normal life for another 2 weeks.  On Thursday 23rd April I went to work as normal, and at lunch time I left to go to my scan.  Our local hospital is within walking distance of where I work so it was easy to get to.  I met Darren there.  We waited in the ultrasound department’s reception area and we were thinking how lovely it was to have an opportunity for more pictures of our son.  I was 23 weeks pregnant exactly.

Finally we were called in for our scan.  The sonographer checked the baby first – all fine.  Then she checked my cervix.  She said she would just get the doctor.  The doctor came in and watched her scan me again. Then he gave us the news.  “Your cervix is very short. In fact, it funnels the entire length when we push on your tummy. You need to come into hospital right away so we can place a stitch to try to keep this baby in.  You will need to stay on bedrest.  You could go home to pack a bag and come here later but we do not recommend it.”

We were in shock.  Our whole world stopped.  I called work to tell them that I would not be in for the rest of my pregnancy.  I can’t remember if we went home to pack a bag or not, but I do remember I was admitted to the ward later that day – but unfortunately it was not possible to get me into theatre that night.  I would be first on the list on Friday 24th.

I didn’t sleep very well on the antenatal ward – it was full of women in first stage labour shouting and crying and pacing the floor. The next day came eventually, and I was taken to theatre and given a spinal block before being laid down on a tilted table with my head lower than my feet. The surgeon started work, then asked for the table to be put on maximum tilt.  There was some sort of conversation going on at my feet.  I knew that there was a risk that putting in the stitch could rupture the amniotic sac – without fluid the baby cannot develop well and infection often sets in leading to imminent birth.  But there was nothing I could do, other than lie back and let the medical team get on with their jobs.  It seemed like a long time, but about half an hour later I was being wheeled into recovery where Darren was waiting for me.  I felt pretty out of it, I had the shakes from the spinal, and I fell asleep.

Later, back on the ward, the surgeon came to see us.  He told us that it had been very difficult to get the stitch in, because at the time of the surgery I had been 3cm dilated. He said he could see a little foot through the opening.  Miraculously he had been able to get a stitch in without rupturing the membranes, it was placed low and was not his best ever stitch, but given the circumstances he was pleased.  He discussed what would happen next – that I would be given progesterone supplements which would help keep my cervix closed, that I would get steroid shots to mature the baby’s lungs incase we did deliver early, and that I would have to remain on strict bedrest with my feet raised for the rest of the pregnancy.  We asked him how long the stitch might give us – a few days, weeks, months even?  He would not commit at all, but gave us the impression that we would be lucky to get months.  A lot depended on whether any infection developed in the site of the stitch or within the womb.  So we started our waiting game.

Friday passed without any incident. Saturday and Sunday came and went.  Monday arrived – by which time I was utterly fed up with being in hospital in a ward without anything resembling nursing care (it was a boiling hot spring, around 30 degrees in the ward, and it took the nurses 3 hours to bring me a glass of water) and where their idea of vegetarian food was cheesy potatoes, jacket potatoes with cheese, or cheese sandwiches.  We asked the doctors if I could go home and do my bedrest there, and they reluctantly agreed.  I think if we’d have known then what we know now we might have approached the situation with a little more caution – but then again eating healthily and being well hydrated are important for ensuring the body can fight infections and reduce stress too.  So, we went home on Monday 27th April, and I set up a nest on the sofa with my laptop, the TV remote control, my phone and some magazines.  Darren works from home so he was able to nurse me, which mostly involved making me meals and bringing me drinks.  I was only allowed to get up to go to the toilet, and for a quick shower.

I was very pleased to be home, but very worried too. I spent a lot of time on the internet as I had little else to do, and one of the sites I found was the Bliss messageboard.  Bliss is a UK charity dedicated to improving outcomes for babies born sick, premature or small.  They do great work supporting families of sick babies – for example by providing easy to read information leaflets, and by providing specially trained counsellors.  Their messageboard is a parent to parent peer support forum where we ask each others advice, provide moral support and go through the challenges of having premature babies together.  I started posting and received a lot of kind words and practical advice from parents who had been there before me.  It helped hold me together during that terrifying week.

Things calmed down – or so it seemed.  On Wednesday night around 9.30pm Darren made me some pasta for tea and we settled down to watch “Spooks” on TV.  Darren was still waiting for his dinner as the meat was taking a while to cook.  Suddenly I felt something wet running down my legs. My waters had burst. (As an aside, Darren banned me from watching Spooks throughout my pregnancy with Samuel – just in case!)

We panicked.  We had no idea what to do.  Obviously we needed to go to hospital urgently, but my brain froze.  Darren doesn’t drive, and I didn’t want to be in a taxi with a stranger in that state.  With hindsight we could have called an ambulance, but we actually called a friend, a trained midwife, who came to get us and drove us to the hospital on a mercy dash.  I had called the labour ward to let them know what had happened and that I was on my way in.  I’d even had time to put a few clothes into a bag, my phone and charger, my pregnancy notes etc.  We arrived at the hospital around 10.30pm.

I was put on a drip and given drugs to ensure labour didn’t start.  Luckily I was not feeling any contractions at all.  A fetal monitor was strapped to my tummy to check the baby was still doing OK. Nurses and doctors came and went, and a strange sense of calm developed, that impression of time dilation that you experience when extreme things happen and your brain seems to slow down, every minute taking an hour.  I was safe, I was in the best place, and it didn’t seem like I was in labour yet.  Which was just as well because I was only 23 weeks and 6 days pregnant.

An hour later, perhaps two, a nurse came to see us. There was bad news – and not of the medical kind.  If our baby was born he or she would need the highest level of medical care.  Hospitals are divided into three categories for neonatal wards – level 1 (special care) for hospitals which can take slightly sick babies, those who need a few extra days of attention but are not critically ill – level 2 (high dependency unit) for hospitals which can take sick babies who might need additional breathing support such as oxygen or CPAP (continuous positive airway pressure – a sort of face mask to help them breathe in), or who might need to be on a drip – and level 3 (intensive care) for hospitals which can treat the very sickest of babies, those needing to be on a ventilator, or needing a long line IV access, or those who are having surgery.  Luckily our local hospital has a very good level 3 NICU.  But it was full.  There was no room at the inn for our baby.  It is safer to transport sick babies whilst they are still inside their mothers, and because I was not in active labour we needed to move to another hospital with a level 3 unit which could take our baby.

Neonatal units are grouped together into regional networks by geographical area, so that each area has at least one level 3 unit and several level 2s and 1s.  We live in London, where there are several hospitals with level 3 units. But every one of them was full.  We ended up being transferred to a hospital about 40 miles away, outside our local network.  That meant that at around 2am Darren and I were put into an ambulance and driven, with blue lights flashing, away from home, friends and family and to a place where we did not know anyone and did not know the area.  Darren had nowhere to stay, and he had no way of getting home and back. We could not do any washing, take care of our pets, or have a friend pop over to drop off a meal. It cost us hundreds of pounds in food and travel costs in the end, but luckily we were able to pay this. Unfortunately this is a common story amongst parents of premature babies as our hospitals are struggling with insufficient resources, and many parents end up in debt because of being transferred miles and miles from home for no medical reason.  Whilst we are very grateful for the medical care we received, I don’t think it is appropriate to be adding stress to parents at a time when their newborn babies are critically ill.  So if you feel strongly like I do, get along to http://www.bliss.org.uk/ and click on “campaigns” to try some of their ideas for helping prevent this in future – from donating money to tweeting there is something for everyone.

So, back to the plot…  we arrived at around 3.30am at the maternity and neonatal building in the other hospital.  I was admitted to a ward and kindly they were able to give us a private room and a fold out bed for Darren.  We finally got to bed as dawn broke, and got a few hours of fitful sleep.  On Thursday morning I had an ultrasound to check that the baby was still OK, and to see if he or she was still moving. It showed that there were still a few small pockets of fluid left, and that the baby was still active and did not appear to be distressed.  With that reassurance we went back to the ward and I got a few more hours sleep.  Nothing was happening, my blood pressure and temperature were fine and I was not in labour.  We settled down for a decent night’s sleep as we crossed the boundary from 24 weeks to 24+1.

On Friday 1st May I woke up feeling fine.  I had a little back ache from sleeping in an unfamiliar bed. By around 10am I spoke to a nurse who gave me a couple of paracetamol.  Around 11am the backache was getting worse.  I wondered if something might be wrong, but I wasn’t convinced.  Another hour or two later and I was starting to get cramps in my stomach.  They were quite mild, and they were coming and going very fast – each one lasted about 5 seconds and they were coming every minute or so.  It felt odd, and I was starting to think there was something wrong, something related to the pregnancy.  But I knew that contractions should last a couple of minutes and should be about 10 minutes apart, getting more and more frequent as they got stronger.  It couldn’t be labour because it wasn’t like that, right?  (oh, hindsight!)  We buzzed the nurse who gave me a cocodamol and said she’d tell the doctor next time she saw him.

Around 12.30 the pain was a lot worse.  I could not get comfortable.  I kept turning over and over, trying to kneel down, sitting up, lying on my side.  We buzzed the nurse at least twice more and she must have realised something was going on as the doctors were consulted and they were told to take me down to labour ward.  The theory was that I must have an infection in the stitch, which was why I was “in discomfort”, and they might have to remove the stitch.  (in hindsight I was actually in the “transition” phase) I was wheeled down to labour ward and given gas and air.  Suddenly it was all better and I felt fine – I even managed a short snooze.

Just after 2pm a doctor came in to assess me, and explain what was going to happen.  The consultant would come in, in a few minutes, and take a look at the stitch.  They thought it might be infected. If so, they would have to remove it, and that might trigger labour.  They would keep me under observation.

Around 20 past 2 the consultant came in, along with several junior doctors.  Because it was labour ward there were midwives around too. The consultant got ready to look at and potentially remove the stitch… I had hold of the gas and air just incase as it would not be comfortable.

He took one look down the lambing end, went white as a sheet and shouted “call neonatal, I can see the head!”.  It turns out I was in labour, and had been for a few hours. Our baby’s head had pushed past the stitch (technically impossible) and he was ready to be born, 16 weeks early.

There was a scurry of activity as junior staff went running down the corridor, midwives were summoned, trainees lined the walls (they don’t often see the birth of a 24 weeker), neonatal doctors and nurses arrived with resuscitation equipment and a heated cot, and all of a sudden I had a huge urge to push.  This was one element of labour I did know about (we were far to early to have been to antenatal classes), and I remember shouting to anyone who would listen that I needed to push.   Everyone was ready, and in just two pushes my baby was born, through the stitch and with the cord around the neck.  The cord was clamped and cut, and a tiny grey thing was lifted up, put into a plastic bag, and handed to the neonatal team.

The baby was not breathing properly, and was tiny.  But it was moving its arms and legs, and alive.  The Apgar scores were 3 (at 1 minute) and 7 (at 5 minutes). The baby was fighting for life.

A swarm of medical staff surrounded the baby.  A tube was put down the throat to help the baby breathe.  A ventilator was switched on and plugged into it. The plastic bag was to preserve heat and also maintain humidity to protect fragile skin. Monitors and sensors were attached.  An IV line was put into a vein as thin as a hair. The nurses were flicking switches and talking to each other, and voices were raised.  “Who tested it?” “it was working fine this morning” “well, it’s not now” “we need another one, send someone to get one now”.  More running. Then our baby was taken out of the room.  Someone explained the resuscitaire was broken, they had to get another one and they had taken the baby into the corridor as the second one would not fit in the room.  They quickly finished the initial rescue attempt,and we heard them wheeling the baby down the corridor towards the NICU.

It was only when they had left the labour ward we realised we did not know if the baby was a boy or a girl.  We had to send a nurse to find out.  Later, she came back – “a boy” she said, “he is still alive but he is very very sick”.

Meanwhile, my labour was not yet over.  I had not delivered the placenta.  The minute our son was out, my cervix decided to finally do its job and clamped shut.  And I was bleeding – which is what happens when a placenta does not separate properly.  There were attempts to get it out – the stitch was removed, I had an injection to speed up the third stage of labour, and the consultant trying to massage my tummy whilst pulling on the cord.  The cord broke, leaving the placenta still well and truly stuck.

After a while, perhaps half an hour, perhaps an hour, I was still bleeding and they decided action needed to be taken.  I was sent in for emergency surgery for what they term a “manual placenta removal” which I recommend you do not Google, particularly at dinner time.  Another operating room, one week after the stitch was put in.  I had another spinal, and was lying on another tilted table.  I was in such turmoil with the shock, the hormones, the fear and worry that I was not thinking straight at all.  I kept looking at the white scrubbed floor, and the pools of blood, and I kept apologising to the nurses that someone else would have to clean it all up.  Strange what the brain does when faced with an impossible situation.

I got through the operation fine, and they got the placenta out and sent it off for testing to see if it would give any clues about why our son was born so early.  The bleeding was fixed, so I could focus on getting over the birth and how our baby was doing. Darren stayed with me in recovery, deciding to wait to see our son until I could go too.

A couple of hours later we were able to go and visit the NICU.  The hospital was really kind and allowed me to be wheeled in whilst still recovering in bed, before I could even get into a wheelchair.  (hindsight insight: they did this because they didn’t expect him to live, and were trying to make sure we met him whilst he was still alive). Our little boy was tiny, weighing just 1lb 6oz.  His head and face were hidden by a hat which held his ventilator tube in place, and shades over his eyes to prevent damage from the phototherapy lights, which cast their blue light over his skin to treat his severe jaundice.  On his chest were 3 sensors to monitor his heart rate, one to monitor his temperature, another to monitor the amount of carbon dioxide in his blood.  A monitor around his wrist kept a constant check on the oxygen saturation level in his blood.  IV and arterial lines had been put into his umbilical cord stump. There were lines feeding his veins with all sorts of drugs, with blood and with painkillers.  His skin was so thin and transparent, and dark brown. He had sepsis – a total body infection – and his blood pressure was very low.

Despite this, he was beautiful to me.  Here is what he looked like that first day:

After that first day, a lot happened.  Nathan suffered brain bleeds on both sides of his head.  He had difficulty fighting off his infection, and needed lots of antibiotics.  His breathing worsened, and he needed high frequency oscillation with nitric oxide and oxygen.  He suffered a collapsed lung, and a duct in his heart remained open meaning he needed surgery at Great Ormond Street when only 5 weeks old.  We were not able to hold him until he was 3 and a half weeks old, and even then we could only hold him flat on a pillow.  But he slowly hung on to life, grew stronger, rode up and down the NICU rollercoaster and came out on top.  After five months he finally came home, on full time oxygen.

Over the next few days I’m intending to re-post some of the notes I wrote at the time.

But today, I just wanted to say Happy Birthday my special little boy, I’m so proud of everything you’ve overcome and what a happy, funny, clever little man you are. We love you so much, and you’ve come so far from that tiny little baby born three years ago.

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About ilove10

Here I spew forth my musings on being a mum to 2 boys, on faith, life, premature birth, child development and buying a fixer-upper Grade II listed house. Welcome! My older son has an expressive communication delay, we use Makaton signing as well as speech. He is very interested in numbers and letters. Recently we were practising expressing emotions by signing “I love…” and he volunteered “I love 10″, hence the name of this blog.
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3 Responses to 3 years ago today

  1. It’s good to be reminded how far he’s come. Praise God! I like the red checks on him too.

  2. Bungle says:

    Shows how fantastic the NHS can be, what wonderful Doctors and Nursing staff we have in the UK.
    And how from a very dodgy start a wonderful special little boy can grow up.
    Love to you all.
    Bungle

  3. ilove10 says:

    Thanks RamblingMinstrel and Bungle – yes praise God who answered all our prayers and kept us sane throughout the whole experience, and well done the NHS – whatever you might say about their lack of organisation for outpatient clinics or horrible food they are exactly who you want to look after you in a medical crisis, the emergency and intensive care is amazing.

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