{"id":3070,"date":"2019-08-14T22:20:36","date_gmt":"2019-08-14T22:20:36","guid":{"rendered":"http:\/\/www.vickygooden.com\/?p=3070"},"modified":"2019-08-14T22:20:43","modified_gmt":"2019-08-14T22:20:43","slug":"your-baby-needs-open-heart-surgery","status":"publish","type":"post","link":"https:\/\/www.vickygooden.com\/index.php\/2019\/08\/14\/your-baby-needs-open-heart-surgery\/","title":{"rendered":"‘Your baby needs open heart surgery…’"},"content":{"rendered":"\n

These were the words that we heard on June 5th this year. The words that took my legs and turned them to mush. The words that made my own heart break. The words that saw me lifting my face to the sky and begging, desperately pleading, for our little girl to be ok.<\/p>\n\n\n\n

Fear, guilt, sadness. Boiling over. Staring at nothing, motionless. Staring at everything, high alert, overwhelmed, jittery, frightened. Wanting someone, anyone to help me stand up.<\/p>\n\n\n\n

Make it my heart. Operate on me. Take whatever you need from me. Don\u2019t touch her. Don\u2019t lose her.<\/p>\n\n\n\n

The top baby was wearing the day we found out has been binned. I couldn\u2019t look at it once we\u2019d buttoned it back up after the diagnostic ultrasound in London.<\/p>\n\n\n\n

Horrifically dark thoughts seeped in and around the contours of my brain, clouding, dampening everything. I would bat them away as hard as I could but on some days I would be so paralysed with fear that I just let them be and let the heavy tears tumble.<\/p>\n\n\n\n

My baby girl is the most precious thing in the world to me. I know that\u2019s so bloody obvious. But she is. Nothing compares, and there are, perhaps annoyingly, no words that do this love justice. I am honoured to be able to give my time and care and all to her experience of the world at this incredibly important and formative part of her life. It\u2019s the greatest job I\u2019ve ever had. I\u2019m learning more than I ever knew possible, about humans, me, development and just how enchanting the world is through a baby\u2019s eyes. To me, she is magic.<\/p>\n\n\n\n

Over her first year, save for a normal amount of colds, she had one bout of bronchiolitis and one throat infection. I feel we got off lightly all told. And each time she got ill, she would so quickly recover. But upon a GP check of her chest via stethoscope, it was noticed that she had a heart murmur. We were told that during times of illness or fever that this can be absolutely normal and to take her back for a follow up check once she was all better. We did. It was still there. We got referred.<\/p>\n\n\n\n

Throughout this time we were told that a heart murmur is more than likely to be innocent though, nothing to worry about, something that will correct in time. After all, nothing was detected during antenatal scans or even when she was born, at the routine checks. Nothing.<\/p>\n\n\n\n

When I did my research to find the best paediatric cardiologist to take her to for what would ultimately be the diagnosis we didn\u2019t want, I was relatively calm about it. I was pretty convinced that it would be nothing, that\u2019s we\u2019d be light-footedly leaving the clinic, breathing a huge sigh of relief and chasing down the nearest banana for her afternoon snack.<\/p>\n\n\n\n

The guy we saw was Dr Alessandro Giardini – who works privately but also at Great Ormond St where he heads up the cardiac unit. He was, is, completely lovely.<\/p>\n\n\n\n

He performed a chest ultrasound on baby, while she was laying on me but he quietly said to me that the reason for the ultrasound was because he was certain the murmur wasn\u2019t innocent. In that moment, I don\u2019t know how I kept hold of baby, a pained smile fixed on my face as I tried to keep her content. I looked at John to my left who hadn\u2019t really caught what Dr Giardini had said, so started to shift in his seat, nervously.<\/p>\n\n\n\n

I can\u2019t remember fully what happened next. And actually, trying to recall it makes me tear up. We saw images of her heart on a screen, we heard words like \u2018open heart surgery, hole in the heart, one side of her heart is enlarged, her lungs will suffer\u2019 etc etc. We also heard that while it wasn\u2019t completely urgent, it just wasn\u2019t going to get better. That there was simply no option but surgery. We heard that the success rate of the surgery was high and the risk low. We were reassured that once this \u2018defect\u2019 was fixed, she would go on about her life normally. No long term issues. I clung on to the tails of those statements for dear life. I still do.<\/p>\n\n\n\n

Basically what happened to Elodie is twofold; she had a sizeable hole between the upper two chambers of her heart and this would\u2019ve been present at birth, although completely undetected. It was of a size that would not close naturally in time, as so many do. It was 13mm at the time of the initial ultrasound and would continue to get bigger as she grew. It could effect her overall rate of growth and long term, the health of her lungs as old blood would just be going back and forth to the lungs instead of new and nutritious blood being pumped around the rest of the body.<\/p>\n\n\n\n

Secondly there was a narrowing of the pulmonary valve (pulmonary stenosis), something that would\u2019ve been acquired over time, not considered a birth defect. Both needed investigating and remedying.<\/p>\n\n\n\n

Apart from the murmur she showed no other symptoms. Some babies with this condition tire really quickly, some have a blue tint to the skin, some faint, others have ongoing and reoccurring bouts of chest infection. So for that, we\u2019re grateful. She\u2019s a strong, strong baby. She\u2019s had a huge hole in her heart and has got through each day of her young life as if everything is fine. She totters around, climbs on to the sofa, dances and bounces around. Her nature and spirit infectious, a bundle of pure joy.<\/p>\n\n\n\n

\u2018Not our baby. Please not our baby\u2019 I blurted out after the diagnosis as John and I blindly stumbled out on to the pavements of London and found ourselves at a coffee shop, god knows how\u2026or why. Baby was completely unaware as to what the problem was, taking in the sights. I drifted between breaking down and powering up. When John looked scared and broken I stepped in with a hand on his back and told him, firmly, that this was going to be ok. We\u2019d have the surgery. She would be repaired. Done. Then I would crumble and need him as my back support.<\/p>\n\n\n\n

It\u2019s so weird walking around in a daze isn’t it? Have you ever truly experienced that? You are walking but you don\u2019t know how. You catch people\u2019s eyes and yearn to be them just for a split second so that this isn’t your reality. You can\u2019t believe or imagine that people are walking on by you having a perfectly fine day, no dramas. Lunch breaks, shopping trips. <\/p>\n\n\n\n

It was my choice to not want to tell everyone, family included. We kept it to a select few and I will absolutely not be made to feel guilty about that. This was about nothing else but the care of our little girl and finding a way for myself and John to navigate through it, and if part of that was to put up a layer of protection then so be it.<\/p>\n\n\n\n

Many of those we did tell, primarily those we naturally speak to most days, were asked to please not bring it up in conversation or pour their fear on to us. It was the absolute last thing that I in particular needed. If I was telling someone via a message I would preempt it with \u2018please be calm and don\u2019t panic\u2019 or similar to protect myself from any verbiage that might then make me panic even more. But still we heard a huge amount of \u2018we can\u2019t imagine what you\u2019re going through, you must be terrified\u2019 and worse.<\/p>\n\n\n\n

People just don\u2019t know what to say. I get it. But it\u2019s astounding just how much of someone else\u2019s fear is projected straight on to the person feeling the fear the most. The person searching for hope and happy endings. And the worst part is that I have done this to so many people before, I know I have. But until we go through a big thing perhaps we won\u2019t understand what it\u2019s like. Because no matter how much you imagine it, it\u2019s not real. It\u2019s not yours. You\u2019re not living it. You\u2019re not sensing it, feeling it, struggling with it. It\u2019s not your every thought. It\u2019s not with you the second you open your eyes in the morning, it\u2019s not the thing that makes you not want to close your eyes at night despite the tiredness pricking at your eyes incase you have another very real nightmare about it. You\u2019re removed from it, be it by one step or 100. It\u2019s not part of you or yours to carry.<\/p>\n\n\n\n

Back home, I spent the days part planning our next moves and part crumbling. When baby cried over something obviously unrelated like me cleaning her after her meals which to her is the worst thing in the world, I would panic that her heart was under too much stress and I’d do anything in my power to calm her down quickly. When she got tired after her dinner I started analysing. Maybe she did tire quickly? Had I missed something all along? I fired emails and calls over to Dr Giardini asking if she was in any immediate danger. I was honestly terrified. Stricken.<\/p>\n\n\n\n

A surgeon had been recommended to us by Dr Giardini, someone he described as the ‘best in Europe’. Yes please, I need him.<\/p>\n\n\n\n

We scheduled a meeting with Professor Victor Tsang, who again worked privately but also for Great Ormond St, and just over a week after the diagnosis we were in his office.<\/p>\n\n\n\n

He is calm. Very, very calm. He draws diagrams and explains things and answers questions. It seemed straightforward. This man operates on newborn hearts, premmie baby hearts and deals with the most complex of cardiac surgeries. This is going to be ok.<\/p>\n\n\n\n

For those who really know us, you\u2019ll know that John my husband has essentially a freelance role as a commentator for the UFC. Work for him can come in at a weeks notice and can fly him over the other side of the world for a week or two, so of course, financially and for his own progression, these things can\u2019t just be turned down. Especially as I am not yet back to work given Elodie\u2019s condition and my (now mounting) desire to be her primary carer at this age. So we discussed how having her treated privately on a predetermined date and time with Prof Tsang was the least stressful way of going about things. An NHS wait could be months and could be subject to last minute changes and cancellations.<\/p>\n\n\n\n

Then comes the most amount of admin I\u2019d done in a long time.<\/p>\n\n\n\n

As soon as Elodie was born, I named her on my health insurance via my employer scheme. But get this. Even though part of Elodie\u2019s condition was not detected antenatally or even postnatally, it fell under a list of congenital defects. Basically, birth defects. And these were not covered by insurance. So a baby with a life altering condition or disability that is deemed to have been present from birth, detected or not and of no fault of their own, is exempt. Now I was told that this was quite standard but in my frequent early morning\/sleepless night research, I found that isn\u2019t always the case at all, particularly with internal<\/em> congenital conditions; ones that cannot be seen. In fact, when we were checking into the hospital for the procedure we were in reception with another family whose baby was having the same surgery as Elodie. We asked about their insurance situation and the dads American employers got it fully covered under their group company policy, no question. The moral of the story here is to really bloody check the policies you sign your precious kids up to as everyone I\u2019ve spoken to is shocked to hear of such exemptions for undetected conditions in an infant.<\/p>\n\n\n\n

A further complication was that part of Elodie\u2019s surgery wasn\u2019t deemed congenital. So the insurers would cover some of the procedure but not all. But where on earth do you draw the line? Both conditions needed to be treated in one surgery. So one lot of anaesthetic, one team, one theatre etc. It\u2019s not like once one was fixed a whole new team would come in to do the next bit on someone else\u2019s watch.<\/p>\n\n\n\n

So what should have been a time for getting our heads and emotions geared up for her surgery turned out to be a time of increased stress and anguish as John and I liaised with insurers, GPs, consultants, surgeons, my employer, finance departments and more trying to establish who was covering what, trying to tie multiple conversations together and to ascertain what shortfalls there might be that John and I would have to somehow find at short notice. John was great throughout all of this as I could barely utter the words \u2018my baby needs heart surgery\u2019 to one more person. As the conversations were ongoing and confusing and unresolved, John and I agreed a cut off point to then start the NHS referral route. It was a Wednesday when we decided that the initial private surgery slated for less than a week later needed to be pulled as everything was still so up in the air. I didn\u2019t want to talk anymore about money. It was making me feel sick to my stomach that all this was about money. I wanted my little girl fixed. I didn\u2019t want to be negotiating deals or rifling through paperwork to show that nothing had been picked up at her early postnatal checks or indeed antenatally. Not that this would’ve made a difference.<\/p>\n\n\n\n

John and I were lucky enough to take a mini break in Cornwall thanks to a friend with a holiday home the week before the surgery was originally supposed to be going ahead, the one we pulled. While we certainly enjoyed moments of the break it was utterly underpinned by a huge and heavy sense of sadness. Sadness and helplessness where both John and I were scared to say out loud our deepest fears. In fact one morning in bed John was brave enough to voice \u2018what if this is our last holiday with her?\u2019 to which the pain and fear I too was feeling jolted through my whole body.<\/p>\n\n\n\n

Cancelling the private operation at least gave John and I a clear new path. A much less certain one and one where we might end up even more financially worse off should John have to cancel work commitments but perhaps a more straightforward one in some respects. Much less negotiation and our precious NHS saving the day. We stopped talking to all the previous contacts and instead started to progress things through our GP; a referral to the wonderful Great Ormond St where we could hopefully name Prof Tsang as our preferred surgeon, although with no guarantee this would be the case. However, conversations were still being had between insurance, hospital and my employers, trying to strike a new more affordable deal for us.<\/p>\n\n\n\n

Very long story short; the private route was resurrected. Insurance agreed to cover some, the hospital put a package together for the parts of the surgery insurance wouldn\u2019t cover of which a contribution came from my employer and the rest went on a credit card.<\/p>\n\n\n\n

A new date was set for her surgery, July 16th, with admission on the 15th at The Harley St Clinic in London. We had Prof Tsang lined up and thankfully as only one parent could stay at the hospital we were lucky enough to not have to fork out for John to stay at a London hotel thanks to a rental belonging to a friend of ours being tenant free.<\/p>\n\n\n\n

She\u2019ll be fine, she\u2019ll be fine. Won\u2019t she?<\/p>\n\n\n\n

What my mind did over the weeks planning the operation flitted between defiant optimism and blind fear. I saw extremely dark things, I blocked them and replaced them with happy scenarios. I sobbed. I felt panicky about making future plans. I was the neediest version of me ever. I couldn\u2019t stand being alone, I needed help and support even though I am completely awful at asking for either. I held her so tight and soaked all of her up. I wanted to make her giggle, endlessly. I gave her my undivided attention, watching her climb up on the sofa then clap herself. Watching her so gently play with the dog. My eyes misting at the sweet nature that this girl before me, our miracle girl, has.<\/p>\n\n\n\n

The morning of the 15th July, we packed our bags. She napped in the morning, had lunch as normal and we got on the road for our 4pm admission. I had do idea what to pack although I\u2019d had a really helpful conversation with a head nurse there a few days prior who suggested that post surgery she would be best in vests that did up at the front so as not to make her lift her arms up over her head. We used to have her in these when she was newborn but trying to find them for a 14 month old turned out to be tough – step up Gap to save the day. I ordered loads, just in time.<\/p>\n\n\n\n

I packed books, a cuddly cat and bunny and some shaky musical instruments. I kept being told that we would be so surprised at the rate and speed of her recovery so I guess I was packing things that she would normally enjoy.<\/p>\n\n\n\n

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I underestimated how much would be happening the day of our admission. I naively thought it was mainly just to have us in the building, ready for the next day. Not so. Before long after we were shown to our room where there was a raised hospital cot bed (sob!) and room for a pullout bed for me, plus our own bathroom and telly, we were told that the following would be happening; blood test, ECG, chest x-ray and regular observations. It all seemed so obvious really huh? Bloods in case she needed a transfusion, to know her blood type. X-ray to I guess work out placement for where to cut through her breastbone to get to her heart and ECG for the current functioning of her heart. Bless her. The x-ray was thoroughly unenjoyable. In fact all of it was. Imagine being a tiny tot used to being at home, safe and sound. And then although a nice one, you\u2019re in hospital with lights and uniforms and machines and devices and beeping. Completely overwhelming. <\/p>\n\n\n\n

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Trying to get blood from her was tough. They tried her hands but they were too chubby to find a vein. So in the end a doctor managed it via her little foot. He asked to leave the canula in ahead of tomorrow but I said no. I wanted our first night there, pre-op to be as stress free for her as possible. <\/p>\n\n\n\n

As a parent with your trusting, happy baby on your lap while a doctor tries to take blood, you just feel so helpless. And this was all the easy bit. I felt deep guilt and such sadness for her.<\/p>\n\n\n\n

Later that day I asked after her blood type; B Positive. Be positive. Words to live by. Of course that\u2019s her type. This warmed and comforted my own heart so much. Silly? Who cares.<\/p>\n\n\n\n

There was a playroom and a sensory room at the hospital. We took baby there. She loved the sensory room. Watching her play made me sad. Watching her delight in pushing a walker toy around and saying BYE to the nurses made me sad. I didn’t want any of this to be happening. She didn\u2019t have a clue what was about to happen to her. A blessing in many ways yes. I wanted to scoop her up, her head rested on my shoulder and go home. <\/p>\n\n\n\n

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We had thought that Elodie\u2019s surgery was 1pm on the 16th but we were told that actually it was now going to be nearer 4pm as the other little baby girl we\u2019d met in reception was going first. <\/p>\n\n\n\n

John and I tried to make her bedtime routine the night before as normal as possible. There was a bath in our bathroom so we fed her and bathed her and then made the room dark, put on the sound of waves on our iPad that she drifts off to each night. It\u2019s bloody weird sleeping in the same room as baby again when she\u2019s so used to having her own space. I was nervous that she wouldn’t sleep. <\/p>\n\n\n\n

John left for the night and I tried to settle her in her cot bed. I think I got into bed next to her about 8.30pm because I didn’t know what else to do. Dr Giardini tried to come and say hello but I was so panicky about disturbing her that I asked him to leave. <\/p>\n\n\n\n

The next morning we followed instructions about her eating and drinking pre-op. I filled her up on good grub right up to the last minute. <\/p>\n\n\n\n

We met the anaesthetist, I signed paperwork outlining the risks. Then we waited.<\/p>\n\n\n\n

My god. It was going to be happening really soon.<\/p>\n\n\n\n

Before we knew it, the bit I had been dreading so much was here. The bit where I carried her down to the anaesthetic room. I\u2019d dressed her in just a nappy and a little hospital gown. We had bunny with us. We were led into a lift to a lower floor, I don\u2019t remember much other than trying so hard to fight back tears and gulp down the almost choking lump in my throat. My darling girl was in my arms. I needed to show her that this was going to be ok. Mummy\u2019s here. <\/p>\n\n\n\n

We walk past the theatre and I catch a glimpse of it. The lights, the nurses and doctors in their scrubs, monitors. How is this all for my baby girl? Somewhere in there is a machine that will act as her heart and lungs when they are doing the main bit of the operation. They will stop her heart and lungs. A machine will function for her.<\/p>\n\n\n\n

Entering the anaesthetic room we see a full size hospital bed but with an infant sized mattress on top of it. It\u2019s tiny. She\u2019s tiny. Make this stop.<\/p>\n\n\n\n

There\u2019s some sort of small talk. I partake but I have no idea what I\u2019m saying. I\u2019m shaking and I\u2019m told to sit at the head of the bed with baby on my lap. John is behind us. Baby is scared. Before long the anaesthetist places a mask over her face and she cries and cries which I am told is the best and quickest way for her to go under as she will be taking in more frequent gulps of it. She fights it and I\u2019m holding on to her and then she goes floppy. And I feel like I am going to pass out. They lift her away from me and are springing into action to get things moving. <\/p>\n\n\n\n

I beg them to look after her and we are ushered out, passing the arriving Prof Tsang as we leave. What can I say to him to make him try his absolute best in this surgery? To show him how much love we have for the little baby in there. Nothing Vicky, walk away, let him do his job.<\/p>\n\n\n\n

I cannot believe she is in there and I am out here. My body just wants to be by her side.<\/p>\n\n\n\n

John and I don’t really know what to do. We were told it could take up to 4 hours. I think we headed straight to the family room where there\u2019s a coffee machine and biscuits.<\/p>\n\n\n\n

I have the 11 affirmation cards I had written out and I am pretty sure I just continuously go through those for the duration of the operation. I fixate on one in particular a lot; Elodie is safe in the operating theatre and I have faith in the medical team.’<\/em><\/p>\n\n\n\n

There\u2019s now a weird sense of acceptance. I\u2019m sitting there, less searching for answers, more just sitting in the moment. It\u2019s happening. There\u2019s nothing I can do. Stop fighting it. The risk is small. She\u2019s being fixed. Her heart is being repaired by an absolute specialist and this will make a huge difference to her life. A positive one. <\/p>\n\n\n\n

More affirmations. Over and over. I possibly look mad flicking through them all, mouthing them.<\/p>\n\n\n\n