Your baby needs open heart surgery
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.
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. Make it my heart. Operate on me. Take whatever you need from me. Don’t touch her. Don’t lose her.
The top baby was wearing the day we found out has been binned. I couldn’t look at it once we’d buttoned it back up after the diagnostic ultrasound in London.
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.
My baby girl is the most precious thing in the world to me. I know that’s 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’s the greatest job I’ve ever had. I’m learning more than I ever knew possible, about humans, me, development and just how enchanting the world is through a baby’s eyes. To me, she is magic.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.
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.
When I did my research to find the best paediatric cardiologist to take her to for what would ultimately be the diagnosis we didn’t want, I was relatively calm about it. I was pretty convinced that it would be nothing, that’s we’d be light-footedly leaving the clinic, breathing a huge sigh of relief and chasing down the nearest banana for her afternoon snack.
The cardiologist works privately but also at Great Ormond St where he heads up the cardiac unit. He was, is, completely lovely. 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’t innocent. In that moment, I don’t 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’t really caught what the doctor had said, so started to shift in his seat, nervously.I can’t 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 ‘open heart surgery, hole in the heart, one side of her heart is enlarged, her lungs will suffer’ etc etc. We also heard that while it wasn’t completely urgent, it just wasn’t 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 ‘defect’ 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.
Basically what happened to Elodie is twofold; she had a sizeable hole between the upper two chambers of her heart and this would’ve 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. Secondly there was a narrowing of the pulmonary valve (pulmonary stenosis), something that would’ve been acquired over time, not considered a birth defect. Both needed investigating and remedying.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’re grateful. She’s a strong, strong baby. She’s 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.
‘Not our baby. Please not our baby’ 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…or 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’d have the surgery. She would be repaired. Done. Then I would crumble and need him as my back support.
It’s so weird walking around in a daze isn’t it? Have you ever truly experienced that? You are walking but you don’t know how. You catch people’s eyes and yearn to be them just for a split second so that this isn’t your reality. You can’t believe or imagine that people are walking on by having a perfectly fine day, no dramas. Lunch breaks, shopping trips.
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.
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 ‘please be calm and don’t panic’ or similar to protect myself from any verbiage that might then make me panic even more. But still we heard a huge amount of ‘we can’t imagine what you’re going through, you must be terrified’ and worse.People just don’t know what to say. I get it. But it’s astounding just how much of someone else’s 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’t understand what it’s like. Because no matter how much you imagine it, it’s not real. It’s not yours. You’re not living it. You’re not sensing it, feeling it, struggling with it. It’s not your every thought. It’s not with you the second you open your eyes in the morning, it’s not the thing that makes you not want to close your eyes at night despite the tiredness pricking at your eyes in case you have another very real nightmare about it. You’re removed from it, be it by one step or 100. It’s not part of you or yours to carry.
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 the doctor asking if she was in any immediate danger. I was honestly terrified. Stricken.
A surgeon had been recommended to us, someone he described as the ‘best in Europe’. Yes please, I need him. We scheduled a meeting with him and, again, he worked privately but also for Great Ormond St, and just over a week after the diagnosis we were in his office.
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.For those who really know us, you’ll know that John my husband has essentially a freelance role as a commentator for the UFC. Work for him can come in at a week’s 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’t just be turned down. Especially as I am not yet back to work given Elodie’s 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 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.
Then comes the most amount of admin I’d done in a long time.
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’s 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’t always the case at all, particularly with internal 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’ve spoken to is shocked to hear of such exemptions for undetected conditions in an infant.
A further complication was that part of Elodie’s surgery wasn’t 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’s not like once one was fixed a whole new team would come in to do the next bit on someone else’s watch.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 ‘my baby needs heart surgery’ 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’t 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’t 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.
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 ‘what if this is our last holiday with her?’ to which the pain and fear I too was feeling jolted through my whole body.
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.
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’t cover of which a contribution came from my employer and the rest went on a credit card. A new date was set for her surgery, July 16th, with admission on the 15th at The Harley St Clinic in London. We had the surgeon 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.
She’ll be fine, she’ll be fine. Won’t she?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’t 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.
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 no idea what to pack although I’d 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. 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.
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’re in hospital with lights and uniforms and machines and devices and beeping. Completely overwhelming.
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.
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.
Later that day I asked after her blood type; B Positive. Be positive. Words to live by. Of course that’s her type. This warmed and comforted my own heart so much. Silly? Who cares.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’t 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.
We had thought that Elodie’s 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’d met in reception was going first.
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’s bloody weird sleeping in the same room as baby again when she’s so used to having her own space. I was nervous that she wouldn’t sleep. 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.
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.
We met the anaesthetist, I signed paperwork outlining the risks. Then we waited.
My god. It was going to be happening really soon.
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’d 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’t 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’s here.
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.
Entering the anaesthetic room we see a full size hospital bed but with an infant sized mattress on top of it. It’s tiny. She’s tiny. Make this stop.There’s some sort of small talk. I partake but I have no idea what I’m saying. I’m shaking and I’m 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’m 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. I beg them to look after her and we are ushered out, passing the arriving surgeon 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.
I cannot believe she is in there and I am out here. My body just wants to be by her side. 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’s a coffee machine and biscuits. 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.’
There’s now a weird sense of acceptance. I’m sitting there, less searching for answers, more just sitting in the moment. It’s happening. There’s nothing I can do. Stop fighting it. The risk is small. She’s being fixed. Her heart is being repaired by an absolute specialist and this will make a huge difference to her life. A positive one. More affirmations. Over and over. I possibly look mad flicking through them all, mouthing them.
• Every hand that touches Elodie is a healing hand.
• Elodie will begin to heal quickly and without pain.
• Elodie will be stronger because of this surgery.
• When I think about Elodie’s surgery, I think only positive thoughts. All will be well.
• Elodie now receives the treatment she needs in the perfect place, time and way for her.
• Elodie’s body heals quickly and easily.
• Elodie is strong.
• I am so grateful for a successful surgery.
• I release any anxiety and fear. My fear is fading by the day.
• When Elodie wakes up from surgery, her body will be at ease and comfortable.
Just two hours later and the surgeon, a doctor and a nurse are at the door of the family room looking at us. They are out of their scrubs, washed and dressed. I want them to quickly shout ‘SHE’S FINE’ but nothing comes from their mouths. I somehow stand and there is some chat of going somewhere more private and in that moment I think my world has ended. Why are we going somewhere private? We walk down corridors and I don’t know where I am going or how my legs are working. I’m desperate and the most anxious I have ever felt. I think something has happened. Where is my girl?We are back in our room and I don’t know what happens next but we are told she is fine and the surgery went brilliantly. And in that moment I think the mounting anxiety, dread and fear collides head on with a tidal wave of relief and my body goes into some sort of shock. My whole body is tingling. Every last bit. I have never felt anything like it. Behind my eyes, my cheeks, my ears, my legs and arms.
My body is on fire and prickling sensations are coursing through it. I can’t breathe, genuinely. She’s ok? The Prof stops going through the details and tells me to breathe and then lay down. I feel so out of control of what’s going on with my body. Something has taken it over and I need a moment. My body is pulling and aching to be with her.
She’s fine. It went brilliantly. No complications. They are setting her up in intensive care.
We are told that we made absolutely the right decision to have her seen asap. Since the initial ultrasound just weeks prior, the hole in her heart had grown. At the time of the surgery it was 17mm (was 13mm). They used a piece of Elodie’s own tissue from surrounding areas of her heart to patch it up. Incredible. I have no idea when the Prof leaves the room. I’m on another planet. We then have to wait for her to be set up in the PICU (Paediatric Intensive Care Unit) which we were told can sometimes take an hour.
Eventually the cardiologist calls to meet us in reception and he takes us down to her. ‘She’s a fiery one…when they were setting her up in PICU she immediately rolled over and tried to crawl on the bed’. That’s my strong little lady.
A few people had told me prior to her surgery that we might not recognise her. She might be puffy and swollen. Nothing could be further from the truth in our case. There were wires and dressings and canulas and tubes but she looked just like our little baby. Just the most beautiful little angel. Drugged up to the eyeballs on pain relief mind, but just beautiful.
We stroked her and kissed her and just stared and stared while she slept.
The nurse on shift was monitoring her 1:1 and all her vitals were doing good. The one concerning thing for me was her breathing, she was sort of snoring. It was a bit laboured. But the docs kept a close eye on her and gave her some meds to help her airways that might’ve been aggravated by the tube that had been down her throat during surgery. They also re-positioned her to keep the throat nice and clear. This helped her loads.
I so wanted to hold her but couldn’t. She was so out of it and hooked up in so many directions to different things. I think I left there at midnight to try and get some sleep and was told that family usually return around 8am in the mornings. I was there at 6am. I couldn’t wait any longer as I’d been worried about her breathing, which I was told the next day had completely settled half an hour after I’d left, with no reoccurrence.
That first night of her in intensive care and me alone in our hospital room was so hard. I’ve never been that far away from her and whenever I heard footsteps coming down the corridor I thought they were coming to get me because something had happened. I slept with the vest she had worn the day before, breathing it in.It truly is remarkable, the rate that an infant can recover from major surgery. The day after, she was more alert, enjoyed a visit from a child entertainer who played her guitar and sang her songs and at 4pm that day I had my first cuddle with her and she slept in my arms. It was pure bliss, where we both belonged.
The doctors and nurses loved how defiant she was about rolling over and snoozing on her tummy, her favourite position to sleep in. Less convenient for monitoring her but we all went with it. 9pm that night, the day after her op, she was standing up in her bed in intensive care, having fun with her nurse – who by the way was amazing. She played her soothing music and when she was more alert would find C Beebies ‘Moon and Me’ for her to watch on YouTube.
After her second night in PICU, we were told that she would be transferred back to our room. A porter brought a wheelchair for me to hold her in for the short journey back.
Once we were back there, the little darling was gently placed back in her hospital cot bed when she pretty much immediately resumed one of her favourite pastimes; downward dog. John and I couldn’t stop laughing at this spirited and formidable little girl of ours.
The nights in hospital are the hardest because no sooner are you settled when a nurse has to come in and do their job of checking all vitals; pulse and oxygen levels, respiratory rates, blood pressure, temperature. As her mummy, I just desperately wanted her to be able to sleep for as long as possible but obviously knew she needed the best care.
Nurses would gently come in at 10pm, 1am, 4am or thereabouts and I would help manoeuvre her or shine a light to help the nurse see what she was doing. Sometimes, unbelievably, Elodie wouldn’t really wake. The nurse would float out again and sleep (for her!) would resume, thankfully.
Three days after the operation, Elodie had more lines and tubes removed so we took a trip with her to the playroom where she did some aided walking. We were even encouraged to take her out in the buggy, so off we went to Marylebone High Street with her which was just THE BEST. Fresh(ish) air, a change of scene, no beeping. We went to a book shop where I got her two new books. We then called in at the Conran shop where I couldn’t resist getting her a little soft lion toy and a card with a big heart on it that her dad and I will write to her in, telling her of her strength. Our little lion heart.That night, one of John’s oldest friends came to visit her in hospital armed with a Hamleys teddy and a book on London and Elodie took her first proper unaided steps, like maybe 10 or 12. Just amazing.
About 3am Elodie was stood in her cot looking down at me in my bed saying ‘Mamma, mamma’ so for the rest of the night/morning we co-slept in the teeniest bed ever but it was just the ticket, for both of us. Me and my strong baby, snuggled up tight, her breathing sweetly, me stroking her back.
At 11am on the 20th July, just 4 days after her open heart surgery, Elodie was discharged from hospital and we went home.
Elodie’s heart condition – ASD (atrial septal defect) – plus the valve issue which thankfully hadn’t transpired to be a problem at all once inspected, was in the grand scheme of things a relatively easy one to fix. For that we are forever grateful. That a surgeon can operate and literally repair her heart with no long term issues expected, is just a true miracle.
There are countless babies however, being born all over the country with much more life threatening heart conditions than our girl and having had a taste of the terror this stirred in John and I, my own heart aches so heavily for any parent going through something worse than our recent experience.
Just last week saw the close of a public consultation on whether a simple test called a Pulse Oximetry test should be made a mandatory part of the existing newborn health check at birth. So far, until now, it hasn’t been and time will tell if this consultation will shift the dial on that. Some hospitals up and down the country have opted to do it as part of their own protocol and many have detected anomalies in the functioning of a newborns heart, referring them over to specialist care and in some instances, saving their lives.
The kit needed which monitors oxygen levels throughout the body, when used on a baby is quick (over in minutes) and painless and costs £725. Not a lot is it? Since this experience with Elodie, I came across a small charity called Tiny Tickers who, as a team of 6(!), work tirelessly and passionately to raise funds and awareness of child heart defects. They have placed Pulse Oximetry kits in many hospitals, they train sonographers to better detect heart issues antenatally and were just last week named as one of the Duke and Duchess of Sussex’s Force for Change charities for August. I am meeting up with a few members of Tiny Tickers myself this week to see if there is ever anything I can do to help them in their mission.
Read the original post and find out more at vickygooden.com
Find out about ASD here.