On Valentine’s Day 2019, we had a heart shaped gift given to us..our beautiful boy had cardiac surgery to correct two congenital defects. Valentines will now always be celebrated as the day that gave our son the best chance at a long and healthy life, and I couldn’t be more grateful to the wonderful team of people at Alder Hey hospital without whom this wouldn’t be possible. All of you are amazing.
Here is his story:
Muruthi was born at 37 weeks 2 days, after a straightforward pregnancy. I was without a doubt, an anxious pregnant lady! In the first few weeks I had a ‘pregnancy of unknown location’, essentially meaning that I was clinically pregnant but it could not be seen on a scan. My HCG wasn’t doubling as expected in those early days. However within a couple of weeks a little flicker of a heartbeat was confirmed on a scan and I was one happy and relieved mummy to be.
After that, everything went as planned. Even the 20 week scan, nothing abnormal was detected. It wasn’t that the sonographer got anything wrong- but not all congenital defects are detectable in the womb. In fact it wasn’t until his 6 week check that the GP identified a heart murmour. In hindsight, I knew. I’d sat with him through many a quiet night feed, listening to his heart beat and feeling a thrill in his chest, from about 4 weeks old pondering whether what I could sense was normal or not. I may have been a junior doctor at the time, but I was a naive first time mum. And a tired one at that.
However, I was grateful that Muruthi was stable and well enough to wait for a routine cardiology appointment at 13weeks old. It was here that his pulmonary stenosis (narrowed and abnormally thickened valve from heart to lungs) and atrial septal defect (hole between the top two heart chambers) were diagnosed. Initially, I just recall being quickly reassured by the registrar that it was very easily rectified by a keyhole procedure. It was almost as if it wasn’t a problem. However the valve pressures were quite high and he was brought back in 4 weeks to see how things were. He remained stable and our outpatient appointments grew further apart as his rate of growth slowed down as he got older. It was during these appointments that our consultant would remind us of the plan to repair the two defects around age 4, via the procedure using keyhole techniques.
Years went by! Muruthi was a well and healthy little boy, however we always had hanging over us that his heart wasn’t yet right and he would need something doing about it. Along came his 4th birthday and shortly after the appointment at which we knew he would be scheduled for his procedure.
This time however, his consultant warned us that the hole in his heart was rather large and that it may not be a good candidate for a keyhole repair. (This repair is done by inserting a catheter via a vessel in the groin and entering the heart that way, then inserting a device which closes the hole. At the same time a balloon device could be used to stretch the pulmonary valve and reduce the narrowing).
Following an MDT the next day, I received a letter to say that Muruthi would need open surgery to repair his ASD. It was a blow! For 4 years we had expected him to be having a relatively quick procedure with a short stay (one night max), to requiring open heart surgery, with upto a weeks stay and 6 weeks recovery, the scar of which would always be visible.
We went on the waiting list and also said that we could be available for short notice (48h), as the op was relatively short in the grand scheme of cardiac surgery cases so we could potentially be ‘slotted in’. We did have a couple of very short notice calls, one less than 24h notice which I just couldn’t practically manage, which we had to decline. Unfortunately, with the onset of chicken pox at the end of November and then Christmas, it meant we ended up waiting over 4 months for the op. That was a lot of time spent wondering ‘will we get the call today’, not really being able to make plans, and for this anxious Mama, a lot of nail biting worry about what it will be like for our little man.
Honestly, I needn’t have worried! Yes it’s a scary time, for anybody. But when the time came, we were given plenty of notice, we got postponed only by one extra day, and on the day of the op we actually ended up going first on the list which was good for my anxiety levels because we had initially been told we’d have to wait around, without a promise of a bed on ITU.
We met our consultant surgeon, were consented, saw the anaesthetist, instictively felt we trusted them and were totally reassured, and off we headed to theatre. Muruthi this whole time was just amazing. Thank goodness for the kindle tablet, which kept him occupied while we chatted serious stuff, and distracted while we waited.
He opted to sit in my knee to have his anaesthetic, and gas rather than IV induction (to send him to sleep), so I was given the mask to hold while he drifted peacefully to sleep. It really was so quick and stress free for him. Somehow, I found it within me to remain calm and composed!
We were lucky, told it would be 4 hours, of course the longest 4 of my life but nevertheless, short compared to the wait of many parents. I got some breakfast and we chatted for a couple of hours, then went to sit outside of ITU and watched telly on the tablet for the rest of the time. Almost to the exact minute, 4 hours later the surgical assistant found us and told us all had gone well, he was just going to ITU and was already awake!!
Soon after we went to see our little man on ITU, and were so relieved. He was awake, groggy, upset and uncomfortable, but overall he looked amazing! Being medically trained, the drains and lines did not really fluster me. I just felt reassured that they were there to be honest.
He had two chest drains, an arterial line, a central line (neck line), venous cannula and a catheter. We had several great nurses on ITU, these people are angels. In fact when Muruthi woke during the night, the nurse helped him play on his iPad and gave him some coco pops, whilst I slept over the road in Ronald Mac Donald house! Oh and what an amazing place that is too. Ronald MacDonald houses provide free accommodation for families of children in hospital, a ‘home away from home’. For me it meant just a one night stay while Muruthi was tucked up in ITU, so I could remain on site. For some families, this really is home and I got a small sense of that when I stayed, and a whole lot of admiration for the families.
The following day we were able to step down to the cardiac ward, and beforehand the chest drains and catheter were removed. Having the drains removed was not pleasant, but thankfully Muruthi doesn’t remember these painful experiences.
I was really amazed at how quickly he progressed, limited really only by pain. Just two more nights in hospital and we were discharged, having been told by our cardiology consultant that Muruthi’s pulmonary value pressure is now measuring ‘normal’ and the hole is definitely no longer there!
After coming home, my mum and dad quickly realised that it would be somewhat chaotic to keep all three kids under one roof while Muruthi needed a bit of peace and quiet for at least another few days. It was half term which was great as we didn’t hesitate to agree to them taking the little ones over to Whitby for the week. Well, ok I did hesitate! But what I mean is that by this point I was feeling a little overwhelmed by the whole experience, lacking any decision making ability, and basically agreeing to whatever a rational brain told me. And they were right! I had never been apart from Makena for a single night, she still woke for bottles and still slept in our bed! How on Earth were mum and dad to cope?!
Well it doesn’t take a genius to guess that she was an absolute gem, going down easily, sleeping in the cot all night, even sleeping through, or self soothing!! They fixed her in a matter of a couple of days. Think they could hire themselves as baby whisperers..
Riri had a fab time away, they were treated like royalty by my parents, made the most of everything Whitby and the area had to offer, and generally had the best week.
Since being back, my parents stayed around for another week, helping with school runs and generally making life easier and less stressful. By 3 weeks post op, it was just us again, and that’s just fine! We were ready for the challenge of being home, the three amigos and I. Muruthi is not far off being ready for back to school, though I know he is nervous about his scar area being hurt, and we are not rushing him because he is really excelling with school work that we know he won’t come to any academic harm by being off a bit longer!! Especially when a trip away to celebrate the end of it all, is on the cards!
So that’s our little heart journey over. Four years of knowing it was coming, 4 months being on the waiting list, and 4 days in the hospital. I’m so grateful to each and every member of the amazing team that is the NHS, who were involved in his care from diagnosis to today, and onwards into the future. You are all heroes!
So what else of SAHM life since I started this journey?
I’ve not properly blogged since Makena turned one, and that is a good while ago.
I think I became a little reticent to over share, and my mind for that 4 months did get a bit bogged down in the waiting game, winter set in, and not much was going on. We couldn’t make many plans except for day to day, and haven’t really had any special milestones to speak of. Then there was the chicken pox onset at the end of November which was.. fun.. Muruthi got it from school, a nice mild bearable case. Exactly two weeks later, Riri got it. His was a little worse, much spottier including his face, but again we felt lucky. Exactly two weeks later and just after Christmas, Makena got it! She was much less happy about things, and was absolutely covered scalp to feet. I thought she’d get scarred. However a few weeks later and the marks were fading fast. Phew, all three kids got through it unscathed and I no longer have to ‘worry’ about it!
It seems too far back in my mind to even document our Christmas, though it was our third and final one at the house my mum and dad built, by the sea. So that was rather bittersweet, it’s a beautiful place and I don’t think we’ll ever stay anywhere quite so picturesque again. 180 views of the sea, headlands, an abbey in the distance. It was probably my favourite place to breastfeed Makena and watch the sunrise.
Onwards and upwards! My mum and dad are actually moving closer to us and we couldn’t be happier about that. The family is quite spread out and I’m glad that we will be closer to my parents and Consequently see more of the extended family.
It’s been 6 months since I left work for good, and I try and reflect on how I feel about it from time to time. Basically to see if I’m genuinely feeling any better. One thing I know is that on the whole I feel a big sense of relief about not having to tackle the extremes of anxiety everyday that I did every time I went to work each morning.
However I do realise that it didn’t end with giving up work. I still get super anxious about well, everything! I find it hard to explain. I over analyse everything. I am constantly on a state of alert to some extent, I struggle with decent sleep (of course aggravated by years of child related sleep deprivation!), mole hills easily become mountains, etc etc.
I surprised myself though, how I was during Muruthi’s surgery. Inside I was a nervous wreck, but I somehow managed to keep a lid on things. I think that was a small step forward for me. However perhaps in managing that, was the reason I became overwhelmed a couple of weeks later after a small incident with Riri at pre school. Straw that broke the camels back!
I’ve started getting nervous too, about my plans to start my PGCE in September. I don’t feel ready! I’m not sure I’ve found my strategy for dealing with this anxiety and i worry that I’m getting myself into another very difficult and stressful field of work! Don’t get me wrong, I truly would love to teach people. Little people! But we all know that teaching isn’t just about being in the classroom.
Perhaps my doubts are mostly centred around the fact that at present, we haven’t organised anything yet, childcare arrangements, finance, and Makena has never been away from her Mama, looked after by strangers. My god will I miss them all when I am gone!!! I love this SAHM life, and honestly, given the chance, I’d take another year ‘off’ and continue doing what I’m doing.
I feel like I’ve only just got started..!
So for now, with my super energetic superhero son and his little bro and sis, we look forward to some fun adventures in the coming months, and I’ll bury my head in the sand for as long as I can! Onwards and upwards!