It’s the life in the years, not the years in the life.

When I was about 18 weeks pregnant we lost a very dear colleague. It was just awful and heartbreaking for everyone at work. Theatres really are family, everyone has to trust, rely and get on with one another in order to deliver great care.

Dr Jonny Ball was a kind, generous man and an amazing doctor. I first remember meeting him as a student. He was so calm and collected. When I got talking to him I was amazed and inspired by his life. He was in the military and shared his time between the RAF and the NHS. He had just finished a tour as a medic in Afganistan, he had worked on the front line and on the military air hospitals that bring back injured service personal. He was also an avid marathon runner, but not just your bog standard road marathons, he ran in deserts in Africa, or back to back marathons, once with a broken ankle by all accounts! When I say he was an amazing doctor I really mean it… if he attended an emergency you could literally feel the room become calm just by the sight of him. He was really inspirational and lived his life to the full. It was a massive shock to loose him.

I attended his funeral a couple of days before my 20 week scan. It was bursting to the brim with people all wanting to pay their respect to an extraordinary man whose life had been cruely cut short. One thing that was a common theme of conversation that day about him was that he had pack more into the one life he had than many could pack into 10 lives. He is the definition of the ‘life in the years, not the years in life.’

I mention him because one of the things we found worst to deal with was the prospect of our child having a shorter life. A life that might end before our own. Because the procedures used to help our baby would only prolong his life, they would never fix him, have only been preformed in the the last 30 years. There is very little data on life expectancy. So they tell you 25-30 years.

I’ll give you a moment to let that sink in.

50% of the people that had those operations 20-30 years ago are still alive today. This was the worst thing about it. Initially we thought, ok, yes something is wrong, we’ll fix it. But that’s not the way this works. Our child will receive palliative care. His life will be shorter.

In a strange way Jonny’s death helped me to come to terms with this. Not because he had died but because of how he had lived.

I promise to encourage my son to live the fullest life he can. I know in my teens and early 20s I didn’t. I struggled with my identity. I didn’t really know who I was or what it was I suppose to do and I suppose I was little afraid of life in general. I hated school, I had a good set of friends so I knew it wasn’t that, but I hated it. I was a decidedly average student, that is the best way to describe me. And I didn’t try much and didn’t have to to get the average grades I needed to keep the teachers off my back. When I was doing my GSCEs I read more Harry Potter than actually revising. God only knows how I passed (mostly Bs). I went to a different school for 6th form, thinking a different school and a fresh start might be what I needed, but I struggled even more. I was walking into established friend groups, and although I was welcomed and made friends, it was never going to be the same. Plus the step up from GSCSE and A level is massive and I wasn’t able to coast the way I had done before. I left after 18 months and got an admin job. 6 months after that I went to do a vocational health care course. This I loved, and I excelled! It was the first time I really put my heart and soul into something, I think it helped that I was slightly older too. My last placement was in theatres and I loved it. I remember saying to my mum I could do this forever. But I went to university to study criminology, cause that’s what I had decided to do at the beginning of the academic year. I went, I graduated, but it wasn’t necessarily the experience or didn’t reap on the job front what I thought it would. I felt even more unsure of what I was going to do than ever. I took a job as a teaching assistant to tie me over. After Christmas I contacted Huddersfiled university about the operating department practitioner course to qualify to work in theatres. Less than a week later I’d had an interview and received a place on the course. It was the start of me actually knowing who I was and what I was supposed to be doing with my life I haven’t looked back. it was definitely the right move for me. I’ve been lucky enough to have a lot of second chances and redo’s and I’ve been able to take my time. Because I knew that I had time (we all think we’ve got time). But what if I hadn’t of had time? What if something had happened to cut my time short, would I have been satisfied with my life? No, definitely not.

I don’t want my son to be afraid to live the life he wants and I will always encourage him. It might not happen, he might live a normal life span. But I want him to have quality of life in the years he lives, no matter how long they may be.

What those couple of weeks, with Jonny’s death and our diagnosis, made one think became abdunatley clear. None us are walking around with our number in our back pockets, none of us know. So live your life to the full, make it count!

April Showers

This is a photo of me at my baby shower at the beginning of April. I look happy and I really truly was. When we recieved the diagnosis I didn’t think I would ever smile again. Let alone be belly laughing at my baby shower!!

I’ve posted this picture because I don’t want people to think that I was sad all the time. I wasn’t, there was far more laughter and smiling than there were tears. I could have cried every day if I’d of wanted. The tears were definitely there if i’d of wanted them. But I made a conscious decision not to. I wanted to be happy and positive… so I was.

In the few days that followed the diagnosis I really questioned if I’d of been able to face a baby shower. I really didn’t think I would of done. But as the days moved on, I reminded myself I was pregnant!! I had as much right to experience pregnancy as the next lady.

A week later I went for cake (big massive chocolate fudge) and coffee (decaf) with a close friend. Her and another close friend were going to suprise me with a baby shower but now she asked if it was still what I wanted. I told her that if she’d of asked a week ago I would have said no, but now I was determined to be ‘just’ pregnant. And this meant experiencing my pregnancy the way I would have done had we not had the diagnosis. I tried as much as was possible and appropriate to try and keep the two things separate. I couldn’t do this all the time, and it wouldn’t have been healthy too. But by doing it sometimes, it meant I could carry on enjoying my pregnancy.

The theme was April showers, and although it was so early in the year it was I gorgeous hot day. It was great, I had a wonderful time and was so grateful to everyone who came and had a part in organising it. Our little was well and truly spoilt.

Feelings.

I’ll be honest, I have a tendency to eat my feelings… and I had an excuse when I was pregnant. No one bats an eye lid when a pregnant lady eats a massive piece of cake… so why not!

I had a lot of different feelings when I was pregnant, some of them good… some of them bad.

I was shocked at the feelings I had when I took the first pregnancy test. The two little pink lines formed so quickly, I hadn’t even finished my wee. I was obviously delighted. We wanted this baby long before it was conceived, long before we even started trying! But at the same time my brain went ‘f#@k!!!’. And I was gob smacked by that reaction. I think it was the realisation that from that moment, my life would never be the same again… ever!!

Annoyed… was another feeling. We found out I was pregnant 3 days after getting married. We were going on a mini moon to Loch Lomond in Scotland and had booked a spa day! Spa days are useless for pregnant ladies, no hot tub, no steam room, no prosecco with my afternoon tea and no full body massage. I had to settle for a facial while Rob lay their next to me getting the full works! Fuming!

Fear, was another feeling I had in those early days. Early miscarriage is always a possibility and I felt talking about being pregnant too much was going to jinx it. This especially came to light when I started getting lower stomach pain at just over 5 weeks pregnant. The Doctor said I was constipated. 3 days later the pain was worse than ever. So bad in fact, Rob phoned an ambulance at 1 am after finding me on the bathroom floor doubled over in agony, sweating and retching. After 45 mins and no ambulance, we phoned to cancel as the pain had subsided with a hot water bottle and pain killers. The next day I was told I had one hell of a urine infection. I was so relieved I almost cried. Even if it was the worse pain I had ever felt. (This still stands, even after labour and child birth.)

The feelings I find most guilty about are the ones I felt straight after finding out about the heart defect. I was angry. Angry at my body for failing to produce a perfect little human. That’s what it was supposed to do and it had messed up. I even apologised to Rob. Resentment to the baby I was carrying. This is the feeling I feel most shameful for having. At this point we weren’t 100% sure we were having a boy, it was still just a baby. And I felt like this little baby was sucking the happiness out of what should be the most amazing time of our lives. I feel awful thinking about it now, it wasn’t this innocent little beings fault, but I also realise that admitting to it is also a massive step to moving away from it. That’s when I knew I had to find out the sex for sure. This little baby had to become our son or daughter, they couldn’t stay just a baby.

Grief was another massive feeling. When your told news like we were, it’s like being told someone has died. And in a way they have. The future you imagined, is no longer, the baby you thought you were having doesn’t exist anymore. You have to grieve what you have lost. And we did grieve. We all did. Me, Rob, our family, our friends. They all cried as if someone had died. Saying goodbye to the future you imagined is the only way of accepting the new one your presented with. Some people may say ‘it’s the same baby.’ But it’s not… it doesn’t mean you will love this ‘new’ baby any less than you would have had you not had this news. But everything changes… completely. Take Rob for example. He thought our little boy was gonna be a professional football player. No such luck now. We’re gonna have to push him in to snooker… or maybe the next Ed Sheeran, but he’s never gonna be the next Alan Sheera.

After the initial shock, we came round pretty quickly. I think Rob accepted it a lot easier and before me. Something I’m immensely proud of him for. He spent the weekend walking round saying how much he loved our baby, how much he loved me and what a special family we were. By this time I was having quite a lot of movement from the baby, so it was a constant reminder for me, which is why I was probably about 10 hours behind Rob in the accepting stage. When I did accept it, my initial reaction was wanting to keep our baby safe. Family were saying how much they couldn’t wait to meet our special little boy. All I knew was that while he was inside me, he was safe. A part of me would have kept him that way forever. Even if it meant never having a tequila shot ever again.

Embarrassment??? I put question marks because I’m not really sure if this is the correct feeling, but the exact feeling is difficult to put into words. I never shared a 12 week announcement on Facebook or Instagram. There was something deep inside telling me not to. I asked my family members not to either. When we had the news I felt people may judge me, that I hadn’t produced a perfect little baby. Which is strange cause as I’ve got older I’ve learnt not to care what people think about my life or the choices I make. But this was different and the feelings I had about sharing our news to a wider group of people scared me. I didn’t want to know their reaction. I didn’t want pity. I think and knew people would feel ‘sorry’ for us. Also explaining to our nearest and dearest had been an exhausting process. People would ask if his heart would correct itself, I still had 20 weeks worth of cooking left!! But I explained if he hadn’t grown a hand by this point, it would never grow… the heart was the same. It may change slightly but the defect was there and it was here to stay.

Jealously and bitterness. These feels were fleeting. I’m not by nature a jealous person. I admire people for the work they put into their lives and all that they gain. Especially other women. We need to prop everyone up and applaud and congratulate people for their achievements and the great things that happen in their lives. It makes you feel good about yourself. But I couldn’t help but feel envious of other pregnant people, and at this time I knew a lot of people who were pregnant and at around the same gestation as me. And they were pretty much all having boys!!! I would never, ever wish this on anyone… not even my worse enemy, but I found myself asking why me, why us? We made a conscious decision that jealously and bitterness would be counter productive and would just create so much negative energy. This happened when on the way back from our first appointment, we stopped at some lights to see a pregnant women with two children. They were misbehaving and looked unkempt and the mother was smoking and screaming at them. Rob said ‘I bet her baby is alright!’ Almost immediately he corrected himself and said he never wanted to think that way again. Our baby was lucky… he was going to have more love and care than he could handle.

Greatful, lucky, thankful. People say you know who your friends are when the going gets tough. I’m happy to report that every single one of ours rallied for us. For this I’m so grateful! They have all been there when we needed them. Both me and Rob can be a bit reclusive together. We’re best mates as well as husband and wife and for the most part he’s pretty much the only human I want to spend all my time with. After the initial share of information we did this often, I’m grateful that our friends let us. I have never previously felt closer to Rob than when we were given the diagnosis. It completely took us to another level that I didn’t even know existed. For about a week we spent 24 hours a day with each other (bar toileting and showering.) And we were physically close, always maintaining physical contact with each other. I’m thankful that it went this way, for so many other couples it can easily go the other way. It helped that we were completely on the same page regarding everything. And I know we are lucky. When ever I felt my inner two year old about to burst out, throw themselves on the floor and start screaming ‘I don’t want this’ like trying to say you didn’t want the sky to be blue!! I’d remind myself to count my blessings. I have an amazing loving husband, supportive parents, inlaws and siblings. I have great friends and I’m lucky that I had a relatively easy pregnancy. We didn’t struggle to get pregnant, it happened a lot quicker than anticipated. I’ve never had to go though the pain of miscarriage, I didn’t suffer badly with sickness and remained well (sans UTI) up until my induction date. I know a lot of women arent that lucky and would take what we have experienced to have a baby in a heart beat. My thoughts are with those families and that is why I am determined to stay grateful for what I have been lucky enough to have.

3 options, 1 choice

When your told that the child your carrying has a serious life changing or life limiting condition your given 3 choices.

First is to ‘interrupt the pregnancy’. These were the exact words that were used. Not abortion, not termination. I asked how many people go down this route, the nurse said she would say about 5% of babies that would have survived with intervention. (This does not include babies that have a condition that is not compatible with life.)

This was never an option for us. Although hypothetically it was discussed. I explained to Rob that it wouldn’t be a case of taking a tablet and the baby just ‘going away’. I would have to birth him. There was no way I could face that in a million years!! Also it would have been for us, not for him. There are many children that live full happy lives with heart defects. For us, it would have been a selfish choice so we could go on and have a ‘normal baby’.

I always said that under no circumstances I would terminate a pregnancy, even if the baby was incompatable with life. I wanted to carry to term and donate what organs could be donated, to help another family, and carry on a legacy in one way or another. Now… I’m not so sure I could. The pain I felt when pregnant was incomprehensible, when strangers asked about the baby, or congratulated me, I’d smile, nod and thank them. But inside I was dying, I wanted to scream at them, ‘there’s something wrong with my baby!! Did you know??’ I don’t think I could go through that knowing I wouldn’t have a baby to take home at the end of it. I feel I’m not as strong as I thought I once was. Which I find sad, and guilty about.

On the subject of abortion I am unequivocally pro-choice. Women have to have the right to decide what is right for them and their bodies. They have to be supported to access safe care and support when making these decisions.

On a more personal level I would say the subject makes me decidedly uneasy as abortion in general is something I would not and could not choose for myself. I am catholic, I went to catholic schools so obviously the underlining teachings on the issue are ingrained in me, but that’s not really what dictates my view. Further more I would never say someone is wrong or judge them on any decision that they would make. This is just my feelings for myself. The narrative however makes me particularly uneasy. The ‘bunch of cells’ argument upsets me, not because it’s used to justify. It shouldn’t need to be justified, it socially accepted and its law. That’s all the justification that should be needed. But because so many people close to me have lost that ‘bunch of cells’ in early miscarriage. To them it is certainly not a bunch of cells. It’s life, it’s hope, it’s a future lost, and it’s heartbreaking. To them no matter how early they lost their baby, they will always parents to a precious angel xx.

I’m sorry if I have upset or offended anyone with my thoughts, but that’s all they are… my thoughts, much love xxx

The second is ‘comfort care’. This means you would carry your baby to term. Give birth and not use any medical intervention to help or prolong the babies life. This is an even rarer choice. I can’t imagine the pain of deciding to carry a baby, to give birth, love it, even care for it for a time, only for them to slowly slip
in front of your eyes. I know parents don’t do this to be cruel, I would never suggest they were. They do it because they believe it is the right thing for the child. That intervening would not be in the child’s best interest, as the life they would lead would be a difficult, restricted and dangerous one. Again this wasnt for us.

The final option is surgical, the option we have opted for. We want our little boy to be happy and healthy and will accept any intervention that will bring us closer to that goal. But its terrifying!! The prospect of changing him from what he is feels fundamentally wrong, bit he needs this to survive. Not be fixed… that’s not an option, but a good life, although it be different than expected is an option.

Like I said in a previous post I’ve worked with a lot of children in my job. Some having small routine operations, some having major surgery. I always hoped that if I had a severely disabled child I would be strong enough to say when the time came ‘enough’, rather than fight to keep them with me, regardless of the consequences for them. Such as pain, and extremely poor or no quality of life. I would never want them to suffer and see no end to it, they would ever get better. I hope against hope it is never a situation I find myself in.

Having decided on this choice we had to wait to have our baby. Although the echoes and scans were positive in all other respects there can be no certainties until the baby is here in your arms. We just had to keep our fingers crossed that what it said on the tin was actually what was inside!

24 hours

24 hours after being referred to Leeds me and Rob were sitting in the waiting room waiting for a cardiac fetal echo. That’s when I knew it must be ‘something’. The NHS doesn’t work that fast unless there’s a reason for it.

The echo took about 20 minutes, if it wasn’t anything I would of probably been in and out in 5 mins. As the minutes passed by my hope of a simple hole slipped further and further away. I could here the words, the terminology of which some I understood.

When they had finished they gave me a piece of tissue to wipe off the gel and told us that there was something wrong. I asked how wrong, the doctor said:

‘Let’s go discuss it next door’

I replied ‘really wrong then?’

I just knew it.

Rob grabbed my bag, coat and hand and we were walked next door in to a room with comfy sofas and boxes of tissues. This was it.

We were told what was wrong with our baby’s heart, namely the septum dividing the ventricles (the chambers that pump blood round the body) was all but missing. Our little one had tried to grow it but decided against finishing it off. There was also a few other thing such as a narrowing of the vessel that went to the lungs and also the main vessels that left the heart weren’t exactly where they should be. The left side of the heart was also slightly smaller than it should be.

My friend who is a perfusionist came to sit with us as I knew I’d need to ask her questions at a later date. Which I have and she’s answered them honestly, with both hope and reality, which I need to hear.

When describing the defect they draw a picture, on one side a ‘normal’ heart. On the other the heart of your baby. Surprisingly all the way through the explanation all I could think was:

‘The picture is upside down’

It’s strange what your brain focuses on when all that’s being told to you is bad news. I even found it amusing! Maybe it was a defence mechanism, and it probably worked as neither me or Rob cried in that room. We sat there taking it in. Me asking irrational questions that although medical had next to no bearing on the condition. I had some knowledge about the heart but I didn’t have enough not to think the worst and put into context what we were hearing.

We were given the worst possible news in the best possible way. The support we received in that room was second to none and I will be forever grateful to the staff with the care that was taken with me and Rob. It was the foundation blocks we needed moving forward.

We sat there sort of taking it in for and hour and a half until Rob clapped his hands together and said ‘right we’re going home.’ Just like he does when we finish drinks at a pub and say goodbye to friends.

I was just staring at the wall.

We went back the next day, for a further 2 hours. Where so many of the fears we had built up in our head were knocked down.

24 hours after leaving that room heartbroken wondering how we were going to cope, we left full of hope for a very different future we’d imagined.

Sexing Scan aka 20 week scan

The 20 week scan is not a ‘sexing’ scan, it is an abnormality scan.

I am a health professional. I work in theatres and have had the privilege of caring for premature neonates right up to the elderly in a range of specialities.

Because of this, I know a myriad of different abnormalities that babies can be born with. I also know that there is an army of doctors and health professionals out there doing their best to care and help all those with health issues, congenital or otherwise.

People would ask me leading up to our 20 week scan if we were going to find out what we were having, I’d jokingly quip back ‘we’re having a baby!’. I was always dead against finding out the sex of our baby just because I wanted it to be a massive suprise and something Rob (my husband) was going to shout out to me in the delivery room. All I wanted was a happy, healthy baby. I couldn’t choose so I really didn’t mind. Plus the nursery was going to be yellow and grey, irrelevant of if I had a girl or a boy.

Walking into the scan department back in December I did so full well knowing that we were going to be finding out if everything was ok with our baby. I was nervous, because I always knew there was a possibility of bad news.

The sonographer was taking her time… I could tell. I know what face health professions use when they’re trying to hide bad news. (I know cause I’ve pulled it myself). She told us to go for a walk, to try get the baby to move so she could get a better view. Come back in 30 minutes. We did… again she took her time.

Although I’m no sonographer I kind of know what I’m looking at. She told me she couldn’t make out certain structures in the heart and couldn’t define blood flow correctly. I told her to show me. She did, there was a big hole in the ventricular septum. She didn’t tell me what she was actually seeing, because shes not a doctor, she wasnt allowed. I could see it myself.

What I also saw (before it all went south was that we were having a boy). I wont put how I know cause I’d never want to spoil it for other people. I couldn’t be 100% but I was pretty sure.

She asked us to wait in the waiting room while she wrote the report and referred us to Leeds. I was shell shocked, so was Rob. I knew what the outcomes could be. Rob was asking what it could be also (maybe it would be fine when we went for the next scan). I was hoping for the best… a simple hole in the heart. Something fixable, or even livable with.

I should of been going back to work holding scan photos to wave in people’s faces of my perfect little baby, instead I couldnt go back. I had to go home, not answering my phone to any one other than immediate family. All who reassured me it would be nothing. I turned to chat groups such as mums net or baby centre to try reasurre myself. All it proved what that anything could, and would happen.

Statistics

The chance of having a bird poo on you is 5%

The chance of being struck by lightening is 1 in 3,000

The chance of having a baby with a heart defect is 1 in 125. Ish

The problem with statistics is that: statistics are just statistics until you become the 1. Then it doesn’t matter how many people have or haven’t gone before you. All that matters is that you are the 1… and in that moment you are the only 1 that has been or ever will be given that news. The chance of our baby having the specific type of heart defect is about 1 in 30,000. So with around 80,000 babies born in the UK per year, that’s less than 3 babies a year!

Me or my husband had no risk factors which would make it more likely for us to have a baby with a heart defect. It doesn’t run in either of our families, I took folic acid for the three month previous to getting pregnant, I don’t take any medication, and didn’t drink while pregnant and neither of us smoked. We were just really unlucky. Which doesn’t help any… but it the truth. The truth we have to make our own.

I decided not to have the 12 week screenings, not because I was afraid that something would be found, but more that it wouldn’t have made a difference it had.

I’m 32, which means even just by my age my risk factor is slightly higher than that of a younger women. Add in and takeaway other findings. I would have been given a risk factor depending on what had been thrown in to the calculations. But that’s all it is a risk factor. It wouldn’t have actually told me anything about the baby that I was carrying. It certainly wouldn’t have told me that I was at risk of having a baby with a serious heart defect.

I’ve seen mums been given relatively bad odds and have had a perfectly healthy baby. I’ve also seen mums be given great odds and ended up having a baby that has a chromosomal abnormality.

In my opinion screening, does one of two things: lures you into what could be a false sense of security, or can worry you senseless for the rest of your pregnancy for no reason. I didn’t want to be either side of the coin, so decided against it, but that is my choice and understand that people want to know and want to be prepared either way or make informed choices about their lives. But like I said statistics are just statistics.

The only thing that I can take from being the 1 to have such a special little baby is… carry on doing the lottery, cause you just might be the 1!