Our tiny little star

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Alix and Justin live in Guildford with their two gorgeous sons Charlie and Sam…

I’ve always been of the view that there’s a reason for everything, and that whilst it might be impossible to see it in the moment, in time I’ll begin to understand ‘why’.
That philosophy has particularly been in the forefront of my mind over the last 6 months as our family take a ride on the rollercoaster that you jump on when you have a child who happens to have DS. Sam is the younger brother of Charlie, and my husband Justin and I didn’t know before he was born that Sam would have DS. To be honest neither of us knew much about the condition, so when, within the first hour of him being born, it was confirmed by the paediatrician that she suspected he had an extra chromosome we had no idea what that meant in reality. In states of shock we were handed some leaflets about DS and left in a private room to get our heads around the news. I remember being scared to let myself bond too closely with Sam as he wasn’t the ‘perfect’ son I’d expected, and worried about whether Justin & I were up to the job of bringing up a child with additional needs. Little did I know then that Sam would bring something to our family that we never knew we were missing in the first place.

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Sam & I stayed in hospital for 5 days. On top of getting to know our new little man and grappling with all the normal challenges of a newborn (feeding was terrible!) it seemed like every hour another specialist was coming to see us to do tests or with more concerns they had about Sam’s health; we saw haematology, physiotherapy, audiology, ophthalmology, and on our final day cardiology. Sam spent some time in SCBU too having a platelet transfusion after concerns that he might have a bleed on his brain. It really was the toughest time emotionally, and completely at odds with the joyous first week we’d spent with our first son Charlie.

The thing I had no appreciation of when we were first told about Sam, was quite how many significant health problems are linked with DS. In hindsight Sam seems to have been quite fortunate, as the main 2 things he’s had to contend with are 2 holes in his heart (a large VSD and a small ASD) and complications with his bloods involving having very low platelet levels, low haemoglobin, and abnormal white blood cell counts (a condition we have learnt is unique to children with DS called TAM). Whilst 2 holes in his heart might seem the more significant issue, it is the imbalance of his bloods that have caused us most concern as we understand that 25% of kids with TAM will go on to develop childhood leukaemia, predominantly around 1-1.5 years of age. For the first couple of months of Sam’s life we seemed to be taking him to have his blood tested on a virtually daily basis, but throughout all the medical stuff Sam has been just amazing. He has an astoundingly sunny and laid back character and not once has he complained about having cannulas inserted, bloods taken, or scans carried out. His immense strength has I am sure made it easier for Justin & I to support him through it all.

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Within Sam’s first week we were referred to the Cardiology and Haematology teams at Great Ormond Street Hospital in London. I had heard people say that GOSH is an amazing place, but having spent so much time there I really can say that whilst the facilities might be amazing and the place kitted out more like a nursery than a hospital, it is the staff at GOSH who make the place so unique. Sam had his open heart surgery when he was 3 months old. The experience of watching your little baby be sedated in the anaesthetic room and handing him over to be operated on was awful. ‘Keep yourself busy whilst you wait for news that he is out of theatre’ people told us, ‘Don’t hang around in the hospital’ they said. So Justin & I duly took Sam’s empty car seat and set off (without going too far!) to try and take our minds off what was happening to our precious little boy. Needless to say we couldn’t divert our thoughts from what might be happening in the operating theatre, so after much traipsing the streets of London we found ourselves in Wagamamas ordering food. I don’t think I’ve eaten that many noodles or dumplings in one sitting in my life! After about 4 hours we headed back to the hospital and arrived just as Sam was coming out of theatre to be taken up to ICU. He’d thankfully done amazingly well and the doctors were really pleased, but the relief of the positive news coupled with seeing our tiny little star hooked up to tubes, monitors and chest drains in ICU was the point the tears finally started rolling down my face. Both Justin & I were elated, but also absolutely exhausted.

It was before Sam’s operation that we joined PSDS, going along to one of the monthly family gatherings at Lloyd Hall in the hope that we might meet families similar to ours who could help us learn more about the journey ahead of us. I vividly remember entering the hall on that first Saturday in February and being so warmly welcomed by Helen, Vicky & Sarah. Very quickly we learnt that Sam’s problems with feeding, putting on weight, and the holes in his heart were ones that many people in the room could identify with. And it gave us real comfort to look around the room at all the gorgeously happy children playing without a care in the world, having come through the other side of operations like the one Sam was facing.

We’re now just over 6 months in and the difference in Sam since he has recovered from his surgery is amazing – and it has been like getting to know a whole different baby. He now actually cries, something he’d probably not had the energy for before. He is no longer on high calorie formula as he can now feed well without getting knackered, plus we even started weaning our hungry little boy onto purée at 5 months, which he seemed to thoroughly enjoy, evidenced by the amazing rate at which he’s been piling on the pounds!

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Fortunately his bloods also look to be improving for now. We’ll still have to get them tested regularly until he’s 5 years old, and we have to get through the ‘danger zone’ age of 1 – 1.5yrs before we can really relax, but at least we can have confidence that he’s being closely monitored by the best in the business.

So now at 6 months old things are settling down a little; Sam is much more alert and inquisitive, and we’ve finally got around to going along to a few baby groups. This is presenting a whole new challenge for me as his mum as I’m adamant not to let Sam’s DS be the thing that defines him. I have empathy for the other mums who clearly don’t know what to say to us because they can see Sam is a bit different, as this could well have been me 6 months ago. So I’m trying to work out whether there’s a way that I can make it easier for others to not feel awkward around us or sorry for us, but I guess that only by getting to know us and seeing how my gorgeous little boy lights up the room will they get that.

Back to my first point about ‘why’; I can already see so many positives that Sam has brought to our lives and feel sure there are even more to come. On a personal level I feel far more balanced and considerate than I used to be and able to focus on the things that really matter in life. Justin & I are certainly much stronger with Sam in our lives as we’ve pulled together to get through the tough times. All our family and friends are completely behind Sam, wanting the very best for him and showing both him and us more love than I ever thought possible. And we’ve met and made friends with a whole new group of lovely people who I know are going to enrich our lives even further. On top of all that my crazy husband Justin felt compelled to run his first 54 mile ultra marathon last month in gruelling conditions across the South Downs, all to raise money for GOSH and to help children like Sam – something I’m sure he’d never have considered before.

When we met Sam for the first time and were sitting in our hospital room feeling sad about his diagnosis, I never imagined what a positive impact such a little person could have and how far away from sad I would feel today. Sure, we’ve had a challenging 6 months, but I’m no longer afraid of the future as, whilst I know Sam might need a bit more time and support on his journey, I’m excited about doing whatever I can to help him get to wherever he wants to be.

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