Nothing can describe the panic and sheer terror you experience when your baby is going in for Heart Surgery. YOUR baby, who you’re supposed to protect, is being opened up and operated on. I’m told a machine will take over the job of his heart and lungs for about 2 hours of the operation. The surgery itself from start to finish, is around 4-6 hours. A machine though? A MACHINE takes over the heart???? What if they lose power and it fails? Whose going to do the job of the heart and lungs then? (I should note here, I know they have generators in hospitals and the likelihood of this happening is very slim, but my mind at this point, is not exactly rational. If anything, I’m freakin out) I have to trust these medical professionals. They do this operation everyday right?. My baby doesn’t lie on an operating table waiting to be cut open everyday though. I’m scared. Very very scared.
Oscar was born with both an ASD and VSD heart defects or in simpler terms, holes in his heart. Around 40-60% of babies with Down Syndrome are born with some form of Congenital Heart Disease… Along with the fact that Oscar had DS, this wasn’t detected in our 20 Week Anomaly Scan either. Oscar had been monitored by his consultant fairly frequently in the months after he was born but back in March 2013 we had a joint appointment, with both our local hospital and The Royal Brompton Hospital, just as a precaution. I remember feeling pretty relaxed that day as Chris, Oscar and I arrived. I shouldn’t have let my guard down. I’ve come to learn this. The minute you do, something hits you unexpectedly. I should have known there was a problem when a whole group of Consultants and Surgeons stood staring at the screen whilst doing an ECO. Something about them taking so long and not talking, made me feel uneasy. Once it was over we were taken into the room next door to explain Oscar would need surgery imminently. Mr McGee, one of the top Cardiologists at the Brompton explained it all, but I didn’t hear a word. I’d only heard the first sentence. Oscar needs Open Heart Surgery. Tears came. He didn’t flinch, stoic and composed. How could he be so disconnected? How could he be so nonchalant about it? Because he has to be Sarah.
So yes, Heart Surgery… I’m told by everyone it will officially be the most horrific day of your life! I’m told to be prepared for lots of tubes and a heavily sedated Oscar. I’m told to be prepared for no sleep myself in the hospital. I’m told that once its done the prognosis is, that he’ll have a perfectly normal functioning heart. PLEASE God let it work.
Now I’m not deeply religious but it’s times like this, I find myself silently praying “Dear God, I know I only ever talk to you when I need something and I’m really sorry about that, but please God let it all be ok”. Shameful of me, but true.
We go in on Monday and the operation itself is scheduled for the next day. Other mummies of children who’ve been through this have said, you won’t feel like it but do not sit outside the operating theatre. Go out for lunch. Go shopping. Take your mind off things. Whatever you do, do not sit and wait.
I can remember the day we drove up to the Royal Brompton Hospital like it was yesterday. It was the second time I’d experienced real panic. The first time was around the time Oscar was born but this was an overwhelming feeling of anxiety and loss of control. My chest felt tight, I was talking, trying to remain bright and upbeat but I felt sick to my stomach. I don’t think that feeling of panic left me for a good few days after the operation.
When we arrived at the hospital, we were sent to a ward where they do all their pre observations – his saturation levels, temperature, blood pressure etc. Oscar had to have an ECO, an ECG and a Chest X-ray, three procedures we were more than use to by now so this took up the large part of the afternoon. Chris stayed was with us that whole time, but as only one of us was allowed to stay overnight on the ward at Oscar’s bedside, he had to leave us to stay in the hospital accommodation that the Brompton had provided. Around 9.30pm, when Oscar was sleeping that night, the Surgeons right hand man, who was to be operating on him the following day, came to see me. He spoke quietly so as to not wake the babies and children on the ward. “Hello Mrs Roberts sorry its so late, I’ve just come out of theatre. (Inside voice – It’s 9 flippin 30, how can you JUST have come out of theatre, you must be knackered. Are you sure you were concentrating on whoever you were operating on?) Surgeon – “I’ve come to take you through the operation and all the risks involved” (Inside Voice again – Oh bloody hell, where’s Chris when I need him, I can’t do this on my own. Keep calm Sarah. Get.it.together) Me- “Yes of course”
That’s when the magnitude of all this hit me. Sure Consultants had talked the procedure through before and I’d listened intently when other parents had told me what was to happen but it wasn’t really until that moment that I fully understood. “So in lei mans terms, we sew a patch of manmade surgical material over the hole, stopping the leaky valve” Ok right, that sounds simple enough “Only where we have to sew, is very close to a major artery that we can’t actually physically see. We know roughly where it is though” OH.MY.GOD… HE KNOWS ROUGHLY!!!! And so the conversation went on. I kept quiet. Listening and trying to digest it. The Anaesthetist had explained to us earlier that’s she’ll need to administer the General Anaesthetic carefully, as we know that babies with DS he have atlantoaxial instability (neck/spine may be poorly developed) and a small trachea (windpipe), meaning that is harder to get them to sleep, therefore could be problematical. He also told us the risks – Bleeding, Infection, Irregular Heartbeats, Damage to the Heart, Kidneys, Liver and/or Lungs. If he accidentally sews the patch in the wrong place and there’s damage to the arteries, he may need a pacemaker fitted and of course, Death. There it was. He said it. DEATH. “Mrs Roberts, we have to tell you the risks. There’s about a 3% chance that Oscar could die”. Now obviously 3% doesn’t sound that much. 3 babies in every 100 die from this procedure. Our risk of having a baby with Down syndrome was 1 in 350, and we WERE that 1… So forgive me if I’m not all that confident at this point with the whole statistics thing. He could obviously see my face and it was this next sentence that remains at the forefront of my mind that night “The hole in Oscars heart has got bigger Mrs Roberts. We can see from his ECG and ECO today that it’s got significantly bigger since March (It’s now end of May). If we don’t operate he might live till he’s 2… Best case scenario 5 years old.(Inside voice – Don’t cry. Don’t cry. Do Not cry). It was a no brainer. I signed the consent form.
It turns out the next day, the day Oscar was supposed to have his operation, it didn’t happen after all. Oscar was second on the list but they had run into complications with the 16 year old boy who went down to theatre before him, so had cancelled ours. We were devastated. We had starved our little boy of milk and food since midnight the night before. It was now 3pm. We had paced the floor with him as he got more and more unhappy with us, not understanding why he couldn’t eat or drink. By now he was lethargic and weak. I lost it. I was so upset they’d cancelled it. All that build up. All that worry. And now we were going to have to wait until tomorrow morning. That felt like a lifetime away. The surgeon had come to see us personally to explain. It made perfect sense. The 16 year olds surgery wasn’t going well and taking longer than expected. How self absorbed could I be? We gave Oscar some food and milk and within minutes he’d bounced back. That young man was down on the operating table and I was crying because I’d had a bad day pacing the wards with a hungry baby. Perspective.
So we waited another night. When morning came I actually felt, for a brief while, a perhaps unnerving sense of calm. I think I was just relieved that they had promised me that Oscar would be first down to theatre and that soon all this would be over with. Chris on the other hand was not in a great place. He’d been on his own all night. I guess he’d had a lot of time to think. I always knew Chris loved Oscar but it wasn’t until that day that I realised to what extent. As they knew that Oscar was going down first, they’d given him this drug that basically prepares him for sedation. So when Chris came onto the ward that morning, Oscar was very sleepy. Chris sat by his bed and watched him. Neither of us were talking, nothing needed to be said. I watched as tears silently rolled down Chris’ cheeks. There it was. Love. All encompassing love, mixed with complete and utter fear.
Eventually the anaesthetist came to take us down. We were allowed to be with Oscar until he went under and one of us was able to hold him until then. I always remember being in Neonatal Intensive Care with Oscar when he was first born and having this overwhelming sense of wanting to pick him up and run. Out the door, to the end of the corridor, out the hospital and run. It was before we’d had the blood test back confirming he had Down Syndrome, so in my head at that moment, if i’d ran, I would never have known or had to deal with it. Here I was now, my baby about to be operated on and I wanted to run again. Of course I knew I couldn’t but that feeling set in again. Loss of control. I will never forget the moment they put him under. The panic in his eyes, the struggle, looking up at Chris who was losing it at the other end of the room (maybe he’d wanted to run?), looking back down at my baby, his eyes wide, looking at me. “What are they doing to me mummy?” “Help me mummy” and then a gasp. The dire smelling gas had filled his lungs. He was asleep.
They’d told us they’d call my mobile when he was back up in Paediatric Intensive Care. That it could be up to 6 hours. The door closed behind us.
The next few hours passed in a blur. I know we got out of the hospital. I know we ate breakfast somewhere and wandered aimlessly around the shops. But can I remember any conversation the two of us had? I think we both went through moments of needing to talk about the most irrelevant crap known to man, to moments of silence. My phone kept beeping that morning, with messages from family and friends obviously checking we were ok and the status of what was going on. And with every beep, I jumped. I will never forget where I was when the phone actually rang 4.5 hours later and it was the hospital. Right next to the cold sesame noodles with vegetables at the deli counter in whole foods. (We were attempting to get lunch and anyone who knows my husband will know that Whole Foods presents far too much choice for him to make a quick decision). It had only been 4.5 hours… I thought it was supposed to take up to 6. Something’s happened. Something’s happened to him. I froze. “I can’t answer it, you answer it Chris”… he did. Oscar was ok. The operation was a success, he was being transferred up in PICU shortly and we were to go back to the hospital and wait in their waiting room to be called to see him. Relief. He was still in intensive care, we weren’t out of the woods yet but it had been a success. I needed to see him. I needed to be back at the hospital. I didn’t want to wait while Chris paid for his Teriyaki Beef Stir-fry. I needed to see my baby.
Obviously we made it back well before they called us in. I remember sitting in the waiting room, Chris eating his beef and seeing a team of about 8 nurses, doctors, hospital porters, pushing monitors, machines and a bed, all walking past the window… It was Oscar. He must have flashed past in about 2 seconds but I knew it was him. He was just lying there, lifeless. Obviously he wasn’t lifeless, he was still under General Anaesthetic but it hurt, it REALLY hurt my heart.
Eventually we were called in to see him and people were right, nothing can prepare you for the moment you see your baby lying there, attached to goodness knows how many machines and monitors. Eyes closed and so still. My heart felt like it was breaking at that moment. He had an Endotracheal Tube inserted through his mouth and down into his windpipe to provide an airway. He was on a respirator to help with his breathing. He had Central IV lines placed in a vein that lead to the right atrium. Their purpose was to monitor central heart pressures and give fluids and medications.
An Arterial Line, which is a small tube in an artery to measure his blood pressure and oxygen levels.
He had two Chest Tubes which are placed into the space between the chest wall and the lung, called Pleural Space. These are placed after heart surgery to prevent accumulation of body fluids. The chest tubes drain air, blood, and fluid from the chest cavity. He had a catheter inserted and was being administered oxygen through a mask. Finally, he heart was being monitored for rhythm, heart rate and respiratory rate. He looked a mess. Chris and I no matter how much we’d prepared ourselves for the moment we saw him, were not expecting him to look the way he did. Our families were obviously on tender hooks waiting to hear how the operation went, which we did, but later they said that we weren’t great at keeping them in the loop initially. Time seems to stop when you’re in hospital. You’re in this bubble, aware that things are going on around you but just so much more aware that right here, right now, is what’s paramount. We’ve never really shared photographs of Oscar in those first few hours as he looked so poorly, even with our family, as it was too distressing.
Oscar had 1 on 1 nurse care in PICU. We could not have been more grateful to the amazing team of doctors and nurses who looked after him when he was in there. They were to say the very least, incredible. They were not only attentive and caring towards Oscar but they were to us… Making sure we understood what was going on, alleviating our fears and concerns and trying so very hard to distract us with chat, as we watched on. Anyone whose had the misfortune of sitting in an ICU will know how scary it is. Machines beeping loudly, alarms going off, parents sitting silently by the bedside, just staring… For hours. Oscar was in the bed next to the 16 year old who’d had surgery the day before (he was doing well thankfully) but our baby looked so tiny in comparison. I would have done anything to swap places with him right there and then.
I find it hard to recall in the right order the events of the next few days. I know he woke up and was very upset. We were told he wouldn’t be able to feel pain but they obviously couldn’t control panic with a drug. I knew Oscar and I could see he was scared. That first evening, they took the tube opening up his airway out. Chris was with him when they did this as it was about midnight and after the emotion of the day, I was told to go back and get some sleep. This was when they saw that he was breathing on his own. I’d waited for chris to come back to the room, unable to relax. Once I knew all was well, this was the first time in days, I allowed myself to properly fall asleep.
We were there the next morning and stayed late into the evenings. Only leaving him to grab some food or get some fresh air. We sat there for days, just watching. It’s incredible how fast children fight back. I remember being allowed to give him some milk from the bottle on the second day and how proud I was of him for coping so well. Just little things like this were a step forward in getting out of there. On day three his chest drains were taken out. We thought all was well but turns out, when they did a Chest X-ray, he had a collapsed lung, or pneumothorax. When they’d taken the drains out, air had gotten in to the space around the lung. This buildup of air was putting pressure on it, so it couldn’t expand as much as it normally does, when you take a breath. A set back. It meant that we would have to stay in PICU longer as he needed to be given oxygen to help the lung. We were so gutted. We had literally been told that morning that we’d be moving to the ward later that day, but now we were to stay in Intensive Care. Obviously it was for the best and they couldn’t quite believe by this point how well Oscar was doing sitting up and smiling, when there was so much strain on his lung. He’s a fighter our boy.
So we stayed in PICU a couple more days and were eventually moved to the ward for a couple more nights. I remember being on the ward with him, thinking, we don’t have a 1:1 nurse anymore, what if something happens in the night? I’ve got to look after him. That first night on the ward I didn’t sleep, I just watched him, as he did.
After 10 long days we were discharged. The relief was immense. We’d already seen a bit of a change in Oscars energy levels but as the months passed we have been astounded by the change in him. We liken it to a Duracell bunny. Before I don’t think we realised just how much of a struggle everything was for Oscar. He just use to sit and play with toys, sometimes not turning to us if we called him. As soon as he’d recovered from the op, it seemed like he had a new set of batteries. His colour changed, he looked healthier and happier and he was off…. Bum shuffling everywhere. His breathing had always been quicker and laboured, now he seemed calm.
We cannot thank The Royal Brompton Hospital enough for the surgery and the continued care Oscar has, and is continuing to receive. He is obviously still closely monitored but after check ups 2 and 4 months after the surgery, he has now gone to 6 monthly checks. They have given him a new lease of life and I will never forget that. I have chosen to share a few photos below, of Oscar after his surgery. They are not meant to upset or be distasteful. I want to show anyone who has a son or daughter about to go through the same thing, that there is hope and that there is a happy ending. Oscar’s a bright, confident and strong little boy, and I truly believe without that surgery, he wouldn’t be. Many children with Down Syndrome in the past, were institutionalized and they were often deprived of all but the most elementary medical services. Fortunately, there have been major improvements in the health care provision during the past 20 years and we are so thankful that Oscar was born in this decade, where people with DS are given the same care as you and I. His precious life is worth everything to us.
Pic 1 – Just after Oscars Surgery
Pic 2 – Watching and Waiting
Pic 3 – First Bottle
Pic 4 – Sitting up
Pic 5 – Finally Home
Pic 6 – Oscar today