Katy: Two Little Boys - Oliver & Matthew's Story

I met my husband Chris at salsa classes 5 years ago. We got married in April 2011 and decided we were going to spend the rest of the year doing things we really wanted to do before we had a baby! We went on an all out luxury honeymoon to the Far East, travelled around India by train, moved house and upgraded our totally battered old car. When Christmas came we felt we were ready to try and start our own little family. I was just starting to worry after our 5^th cycle of trying to conceive when shortly after our first wedding anniversary I got the elusive BFP - we were thrilled and so excited.

At the end of July came our first BIG surprise. I was massively worried about the 12 week scan as my close friend had had a missed miscarriage. So, when the sonographer said “Ahhh OK,” I convinced myself something was up until she turned round the screen and said “Well there's your baby..and there's the other one!” TWINS! We were totally shocked but really pleased. I was 29, Hubbie 32 ,no history of twins in either family, no fertility treatment, all in all no risk factors for twins. We told all our family the news that weekend. Everyone was ecstatic. A week later we saw the consultant who reassured us that they were DCDA twins (the lowest risk type).

My pregnancy was pretty text book and our 20 week scan showed 2 perfectly formed babies kicking each other! The only real problem I had was that I got very huge, very quickly, I'm naturally quite skinny so it really showed. I started to struggle with back pain and had to go for phsyio (off a gorgeous Irish guy unfortunately!) By 24 weeks I measured 35 and had put on 2 ½ stone, more or less only on my bump.

Therefore I didn't worry too much when after a busy day pram shopping at 24 weeks I started to get a crampy pain in my back. It wasn't dreadful but it was nagging and on Monday morning I rang maternity assessment to get it checked out as I had a busy day at work. They said that all sounded fine, that I wasn't leaking fluid or bleeding and the babies were still moving but If I wanted to come in for reassurance then I could. So I did feeling like a paranoid first time mother! Once there all looked fine, the midwives were all ready to send me home or rather back to work for an afternoon of teaching 8 year olds PE (!) but as a matter of procedure a Dr came in to check me out. This was then I was found to be 3cm dilated... then everything went crazy.

The hospital I was booked in to had Special Care but now NICU so I was put in an ambulance (blue lights sirens the whole lot) to go to the nearest place with 2 NICU cots that was about 40 miles away. I still felt O.K, everyone had told me labour was really painful, this couldn't possible be it, I was given drugs to stop the contractions with a view to having a rescue cervical stitch put in but they didn't work (I have since found out from my parents who are both Drs that these drugs have a very low success rate).

After a scarily short labour (with 15 medics in the room not what I had ever imagined!) Oliver Thomas (1lb8oz) and his younger brother Matthew Daniel (1lb9oz) arrived in to this world kicking and screaming, surprisingly loudly, at 8:55 and 9:16pm- They were perfect, I instantly fell in love with them and I glanced across the room to see them being taken over to the NICU.

I visited them twice that night, they were bigger than I thought they'd be and over the next few days they remained stable. I spent almost all day and night going from incubator to incubator. Their odds of survival were never great at around 25% but they made small amounts of progress. They were able to be feed  on my breast milk through a tube, have little cuddles in their incubators and hold our fingers. Their brain scans and blood tests all came back clear. They each had their own little personalities. Matthew was more chilled and Oliver a lot more boisterous!  The staff there were all amazing. My father in law used to be a neonatal- paediatrician and was so impressed by the standard of care which was really reassuring.

On day 5, Matthew took a sudden turn for the worse, his tummy swelled and he lost his colour, he was diagnosed with necrotising enterocolitis (a disease of the bowel common and often deadly in premmie babies) He was immediately put on high strength antibiotics and the head consultant rushed in from home. Despite the best attempts of the medical team he was taken off his ventilator in the early hours. We held him as he passed away and told him how much we loved him. He looked so peaceful as we gave him a wash, dressed him in some new clothes and tucked him up in a Moses basket.

The next morning and Oliver was still doing O.K but the staff were slightly worried as his temperature was varying slightly, as a precaution he was started on antibiotics and transferred to another hospital where they can operate on tiny babies with NEC. Sadly he got worse very quickly and that evening they had to operate. 

We followed his incubator down to the theatre where we told him what was happening and he squeezed my finger- It was as if he already knew. We waited for the longest hour of my life until the surgeon came out and said he had tried his best but that it wasn't enough.

Less than 24 hours after we said goodbye to his brother we said good bye to Oliver and gave him the same respectful death as we gave Matthew. Then all his grandparents came in and gave him a goodbye cuddle. Without his wires in he looked just like his Daddy.

I wanted to tell my boys story for a few reasons-

Firstly to highlight the risks of multiple pregnancy. So far they think they were premature just because they were twins. That I was carrying around the same amount of extra weight as a woman at term, that my body was tricked in to thinking it was time they were out and my cervix gave way. They were perfectly formed and big for dates. I'm fit and healthy and had no sign of any medical condition. If you are, or know someone who is carrying more than one.. make sure that you listen to your body extra carefully.

 I also wanted to say how hard it is being a mum of multiples on a neonatal unit. I still wonder if I spent the same amount of time at each incubator, did I hold them the same amount of times? It was very hard after Matthew had died walking past the incubator he had been in to see Oliver and stay strong for him. As well as the guilt of feeling that I have let them and everyone around me down I also have the guilt this brings with it.

But most of all I wanted to tell the story of my gorgeous sons and how, even for just a short week, they brightened my life and the lives of all those around them.  

Sleep tight my handsome chaps!

Lisa: Do you have any children?

This post comes from Lisa's blog Dear Finley. Thanks to Lisa for allowing us to publish this here also…

When your child has died, sometimes even the most ordinary of circumstances can cause an ache in your heart like no other.

Imagine - you're the new wife at coffee morning, the new person in the office, joining a gym or a club, anything in which you would encounter people that you've never met before, but in which you would be required to socialise.

My name is Jane, what's yours?

Nice to meet you Lisa.

Oh you have an interesting accent, where are you from?

How come you moved to England of all places from somewhere as amazing as Canada?

Are you married?

Do you have any children?

And there it is. The awkward question that makes any mother whose child has died stop in her tracks. It is only natural that people ask this question, I used to ask it all of the time without a thought.

It never would have crossed my mind that the answer could be causing an internal struggle for the one who would have to answer.

But a struggle is what it is.

Normally, the person asking is going for light conversation, and therefore to hear a heart-wrenching story about how your child died is not what was expected.

But as the parent, you feel like you want to be honest - to share your child and be proud of your child, like any other parent in the world.

It really is a dilemma and I usually consider who my audience is before answering.

If it is somebody I'm not likely to ever meet again, I might just say 'no' and leave it at that. It's easier not to have the looks of pity and the stammering as the one on the receiving end of the story doesn't know what to say. But saying no leaves me so full of guilt, as though I'm denying that my son ever existed. As though I'm denying that my heart yearns for him every second of every day. I find myself apologising to him in my head for not being strong enough.

On the other hand, if I'm speaking to somebody who I will be likely to meet again, who will likely get to know me over time, I try to be honest. I will probably say something along the lines of 'I have a sone but he passed away.' This usually leads to me having to tell my story, and depending how I will at the time will depend on how much I elaborate on what happened.

As a mother, I hate that I have to make a decision about whether or not to talk about my son. But as a bereaved mother, I find that this is all a part of my new normal. A normal that I wasn't aware of before but that I will now never escape.

If you are a bereaved parent, how do you answer the question 'Do you have any children?' or 'How many children do you have?'

Nicole: To Carry a Rainbow

As I write this I'm currently just over 21 weeks pregnant.  I can feel my baby moving about inside my tummy.  It's magical, and amazing, but it's also the most terrified I've ever been in my life.  Since losing my son I've discovered these miraculous babies who are conceived after loss are often referred to as 'rainbow babies'.  I have read that they are called this because 'the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn't mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of colour, energy and hope'. 

This is the perfect description in my view.  This baby does not negate the loss of our son.  We still miss him, every single day.  Sometimes the joy I feel about this baby is immediately followed by sadness for the loss of my son.  This doesn't mean I don't love this baby as much, or want it as much, just that my sadness about the loss of Xander remains, and always will.  I think this might be difficult for some people to understand, but it won't seem strange to other bereaved mums at all.  I can feel extreme grief and sadness about the loss of my son, as well as my love for him, whilst still feeling joy, excitement and yes, even hope, for this baby.  Just like parents who are lucky enough to never lose a child don't love their second or third children less than the first.  There's no limit to how much you can love - your heart expands to include them all.

I don't know what will happen with this baby - will he/she be safe? Will I bring him/her home this time?  Will they grow up to be happy, healthy adults? The trouble is, we just don't know.  I know - no one ever knows.  But with a rainbow baby the fear is always there.  Xander died despite being healthy, and so much could go wrong with this one too.  I get bursts of positivity, but I also live with anxiety every day.  Of course it's worth the anxiety, worth the risk.  The chance for me to have a living child, though it seems remote and hard for me to believe at the moment, is worth the fear.

I love this baby already.  I love them like I loved their brother.  And if the fear, and worry, is what I have to go through then I will.  When I feel hope and excitement, I'll embrace it, and appreciate it.  But the fear will always be there.  As I keep saying to my rainbow - stay safe, baby, stay safe xxx

M: On this day last year...

It's Bonfire Night 2012. This time last year it was a Saturday and my best friend and her husband had just come to stay with us for the night. When they arrived I was waddling round the kitchen with my nearly 30 week bump, making a pan full of toffee. I'd collected up the apple harvest from our tiny apple tree, and it turned out the ridiculous inch wide apples made for perfect toffee apples. I think my other half had made a chilli, whatever it was we scoffed bowls full of it before heading out. The exact order of things that night is a bit fuzzy, but we had a trip down to a local pub where some daft friends had pockets rammed with fireworks and were having a great time sneaking about behind the pub setting them off. We snuck around the town like kids with the bags of fireworks we'd bought, finding spots big enough to let them off as we couldn't fit them into our tiny garden. I broke the habit of my pregnancy and had a whole half of Belgian beer, which tasted gorgeous. I proudly wore an over tight top showing off my wonderful bump to the world. This was to be the last time we'd see my best friend before we were all grown ups – before we were parents and they were honorary aunt and uncle – so we were loving our childish fun. We just had a fabulous night.

Our local football club had a fireworks display, which we walked down to watch. I remember so distinctly cuddling my bump as the fireworks went off and we chomped toffee apples. By this time we knew that our baby had a very poorly heart. Our best case scenario for the next year was that he'd make it to 9 months or so before having the operation to save him, which itself had a hefty chance of killing him. As I watched the fireworks and he jiggled around at the bangs and the tasty toffee I wondered if he'd be around to see his first bonfire night outside next year. Maybe we'd be by his side in hospital, maybe he'd be better by then and sitting right here with us watching the fireworks with wide little eyes in which I'd see the reflections of the fireworks, or maybe he wouldn't have made it through his operation. I was pleased that he was getting the bonfire night he might not get to see next year, but I secretly shed a small tear under the cover of the dark.

What I never imagined is that 7 weeks later we'd find he'd passed away before they ever got a chance to mend him, before we'd even had the chance to meet him, or just once to see those twinkling little eyes.

Tonight is bonfire night, my partner and I will be off to watch the same firework display in a few hours. I am so grateful for the memories I have of last bonfire night, the one we got to spend with our little boy. This year we'll be on our own, except for the happy little presence that will always be with us, sitting on our shoulders and giggling.