Friday, 30 November 2012

Clara: When loss keeps on happening...

At the moment, I am waiting to miscarry. My fifth pregnancy, my fifth child... yet still no living children.

All was going well. Various early scans had shown a little bean, with a heartbeat, developing well. A scan at 11 weeks on Tuesday showed the heartbeat had stopped. This has been so completely unexpected and I feel completely numb. If anything, I expected the bad news to come as we approached 20 weeks and beyond. I have been taking all my myriad of medications, focusing on getting to that point and then taking it from there.

Since finding out we were pregnant again, I have injected myself with heparin over 100 times. I have taken over 200 steroid tablets as well as the daily aspirin tablets. I have had two intralipid infusions. Folic acid tablets, vitamin D tablets, pregnancy multi-vitamins. All to no avail.

We do not yet know if the condition that took Molly and Grace from us (massive perivillous fibrinoid deposition) is responsible for this loss also. My placenta will need to be sent away for testing. If this condition is found again, we have nowhere else to go. This treatment plan was our last hope.

If the loss of this fifth much-wanted baby is just ‘one of those things’, I still do not know where to go from here. I just don’t know if I can cope with being pregnant again. My body needs a break. In the past 28 months, I have spent 18 of them pregnant with absolutely nothing to show for it, except a gravestone commemorating two little girls and a shattered heart.

A very close friend with the same condition lost her 4th child last week. She has 4 children in Heaven now and, like me, has no living children. I have 5 children in Heaven now. It’s too much, it’s unfair to expect so much of one bereaved mummy. As this friend has said, we are a medical mystery. Despite the advances in modern medicine, we are a rarity and people don’t really know what to do with us. Our children are perfect but our immune systems are letting them down.

I just don’t know where to go from here. My heart has shattered. I feel I have let everyone down... again. It’s just horrendous.

You can read more about my journey here: Clara- My Story
You can read more about my condition here: Clara- Massive Perivillous Fibrinoid Deposition

Update Feb 2013: Placental tests came back to show that MPFD had returned with a  vengeance despite the extensive treatment plan. So this does not work for us. Where do we go from here? We just don't know.

Friday, 23 November 2012

Sarah: The Story of Our Premature Twins

Our story begins on the 20th July 2012. I was 28 weeks pregnant with my twin girls. I had been getting regular pains all day at work (my last day!), but they were not too bad, so assumed that they were Braxton Hicks. In the evening these pains got worse, so I decided to call the labour ward, who advised us to come in to be checked. I had not yet packed my hospital bag, so was madly trying to chuck what I thought I might need in a bag just in case (it was my plan to pack my hospital bag that weekend ironically!). We got to the labour ward and were shown almost straight away into a room. I was connected up to the fetal heart rate monitor where we could hear two healthy heart beats.

I was then examined by one of the midwives, who, to my surprise told us that I was in fact 3cms dilated, with waters that were just about to burst, and the chances were that my girls would be arriving in the not too distant future. I was then put on a drip to slow down contractions and given the first of 2 steroid injections (to help strengthen babies lungs).

At this point it was quite late, so my husband decided to go home for a rest. I continued to have contractions every 5-10 minutes throughout the night, using gas and air as my pain relief. I was then given a second steroid injection twelve hours after the first. Laurie Gatehouse came down from the Neonatal Unit and talked us through what was likely to happen when my twins were born. We were told that I would need a caesarean section due to twin one (Grace) being breech.

At around 4pm on Saturday 21st July, my contractions seemed to get more intense and painful. I was examined and found to be 10cm dilated. Everything then happened in a bit of a blur, I remember Drs and midwives prepping me for surgery. It was very rushed and rather scary! But necessary due to the fact that I was getting the urge to push, which with a breech baby could cause a lot of problems!

After being given a spinal block, twin one (Grace) was born at 18:06 and twin two (Isla) was born at 18:11 using forceps, as she was stuck high up under my ribs! I was told that my early labour had possibly been caused by Isla’s placenta being infected, so the surgeons spent a long time cleaning me up, and all three of us were then given strong antibiotics.

When they were born, Grace needed to be fully resuscitated (scary!) but Isla was managing to breathe by herself. They were both stabilised in the operating theatre, by two teams (one for each baby) of Drs and Neo natal nurses. Once stable, we got a quick glimpse of them, as they were wheeled past us to make their way to the Neonatal unit. We were then told that the nurses would contact us as soon as the girls were settled. This took a few hours, but eventually my husband was allowed to go and visit our daughters (I was bed bound due to the Caesarean, and pretty dosed up on painkillers). My husband returned with a photo of the girls taken by the nurses.



I finally got to meet my babies the next morning, but wasn’t able to hold them until they were 5 days old.

The girls settled really well, and I got down to trying to produce some colostrum for them. After much boob squeezing from both my husband and I, I started to produce colostrum. The process of collecting this was very time consuming! I would be squeezing it out, while my husband sucked it up with a 1ml syringe and then took it down to the neonatal unit for the nurses to share between the girls. After 3 days the real milk came in and I was an emotional hormonal wreck! I just sat on my bed and cried, and when asked what was wrong, I replied “I don’t know!” I was told this is perfectly normal.

After a week or so, the girls were doing really well and were really stable, so they were transferred from the “hot room” (more intensive care) into the nursery. They continued to do well for the next week, both were on optiflow, which uses water vapours to push oxygen into their nasal prongs, making it easier to breathe. Unfortunately they both developed a chest infection, so were put on antibiotics to treat them. Little did we know, things were about to get a lot worse very quickly.

On the evening of the 1st of August, we received a phone call to say that Isla was not doing so well, and had been moved back into the hot room so that she could have a closer eye kept on her. We went in to see her, she looked asleep and settled so we weren’t too worried, so we went home to bed. We then received another phone call to tell us that she had had to go back onto the C-pap , which maintains continuous positive airway pressure in the lungs. We were told to rest, and they would contact us if there were any changes. We then received a phone call at 6am on 2nd August, telling us that Isla was now on a ventilator, and would need to be transferred to a different hospital as they suspected she had Necrotising Enterocolitis (NEC) and may need surgery.

NEC is a gastrointestinal disease which typically affects premature babies. The disease creates both an infection and inflammation in the bowels. The treatment ranges from stopping milk feeds and giving antibiotics, to surgery to remove the infected gut. Unfortunately Isla had an extremely severe form of NEC.

We waited all day to find out where Isla would be transferred to (we were told it could be Oxford JR, Great Ormond Street or Addenbrookes). Finally at around 6pm on the 2nd August, Addenbrooks contacted MKGH to inform them they had a bed for Isla. A transport team were then dispatched from Oxford (where they are based) and they made their way to MK to stabilise Isla for her journey. This took quite a while as they wanted to get a long line in, to make it easier to administer drugs during the journey.

Isla waiting for a bed in another hospital

Isla being transported in a very high tech transport incubator!

We then had to make the decision to leave Grace in MK (still suffering from a chest infection but otherwise stable) and make our way to be with our critically ill daughter in Addenbrookes. When we arrived, the surgeon spoke to us straight away, and told us that she would most likely need surgery to remove the infected parts of her gut. We were told that if they could, they would wait until morning, but if necessary they would have to operate overnight. We were then given a room just down the corridor for the night, where we tried to get some sleep (note the word tried!!) we did not receive any knocks on the door throughout the night, which was a relief!

When we got up in the morning we were informed that Isla would be going down to surgery, and that they were waiting for blood and platelets for her. She was then taken down to theatre, where they operated on her for around 3 hours (it felt like a lifetime!). When she returned, the surgeon informed us that he had had to remove a lot of damaged gut, and what he had left in there did not look great, but if he had removed any more she would have been left with short gut syndrome. We were told that our daughter was extremely sick and the next 48 hours were crucial. We got through the first 24 hours and were told that Isla’s kidneys were not working, which meant there was no urine output and she was swelling up due to fluid retention. It was then suggested that we have a naming ceremony for her, so the nurses contacted the hospital chaplain who performed a wonderful ceremony with all our family around her incubator (except for Grace of course who was doing well back in MK).

After a few days, we finally started getting wet nappies (we were so relieved we even took a photo!). Isla seemed to improve gradually, but seemed to be blocking her ventilator quite a lot. It turned out that this was because she was having fits, and now had a bleed on her brain. We were told that there was no way of telling how much damage this bleed would cause, but there would certainly be some kind of mobility problem for her down one side, due to where the bleed was.

We continued to hope and pray that she would keep fighting and would pull through. Finally on the morning of Thursday 9th August we had a knock on our bedroom door to tell us to come quick. Isla had blocked her ventilator and was being resuscitated. This was successful and she was then made stable again, until a couple of hours later when she did the same thing again. Her consultant looked at us and told us that this would probably keep happening and it was now up to us to decide if we wanted to withdraw her life support. We looked at each other and we knew that this was the end of her fight. We made the decision to turn off her ventilator after one last cuddle with both of us. Isla was disconnected from all her machines (apart from one drip containing morphine to keep her comfortable) and she sadly passed away in our arms, aged 19 days old. Although heart breaking, we felt a strange sense of relief, knowing that our baby was no longer suffering and in pain. Isla’s consultant informed us that her blocking her ventilator was her way of telling us she had had enough.

We had our last cuddles with our daughter and I carried her down to the morgue. We then packed up all our things and made our way back to MKGH where the wonderful nurses had screened off an area by Grace’s incubator for us to have some privacy and to be able to grieve for our daughter. It was very emotional, but seeing Grace helped to keep us strong and realise we had to keep on going for her.

During our week away with Isla, Grace had come on in leaps and bounds and was now wearing clothes and making her first noises!

Grace wearing her first item of clothing!

Grace continued to get stronger and we found that visiting her was really helping with our grief for her sister.

She started to make sucking actions, so I started to put her to the breast while being fed through her NG tube sometimes, so she would associate this with feeling full and eventually latch on. She started to show an interest in the breast but struggled to latch on due to her mouth still being so tiny. I decided to try nipple shields, which were a hit, and on the last day of August, Grace finally had her first feed from me (a lovely end to a terrible month).

Grace was then having 3 hourly feeds, every other feed she was put to the breast so as not to wear her out too much. When I was not there during the night, she was offered either a cup or a bottle of expressed milk. When Grace was successfully taking every other feed either from breast or bottle, she was then moved onto 4 hourly feeds, of which every feed would be breast or bottle with an NG top up if needed. She took a week or so to get used to having to work for her food, but something finally clicked, and we started to hear talk of going home! As Grace was still on oxygen, she was connected up to a downloadable sats monitor, which the community nurses (the nurses that visit when you are at home if you are on home oxygen) assessed and decided how much oxygen she would need to come home with. The oxygen was ordered and delivered the next day and on the weekend of 22nd September we stayed at the hospital for two nights (to get us used to having a baby to get up to in the night and have the support from the nurses if we needed it).

Finally, after a 64 day stay in NNU, Grace came home on Monday 24th September. Two weeks before the twins due date.

Bringing one baby home when you are expecting to bring home two was hard emotionally, but knowing that Grace is getting that much stronger every day has kept us going, and although I still re-live the week we lost Isla and I still cry for her, I know that Grace needs her mummy and daddy to be strong for her. We will celebrate Isla’s life every year on the day that we lost her and we will bring Grace up knowing that she is a twin, and if she ever wants to know, we will tell her the story of how her sister fought so so hard for her life.

Here is Grace aged 15 weeks (3 weeks corrected age) still thriving and getting bigger and stronger by the day.

Wednesday, 21 November 2012

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 5th 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!

Tuesday, 20 November 2012

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?'

Wednesday, 7 November 2012

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

Monday, 5 November 2012

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.