When we receive bad service or we’re not satisfied with a product, we as a nation, are the first to complain. However, if we experience something amazing or someone treats you well, ashamedly, it sometimes goes unnoticed or unrecognised. In my opinion, and I appreciate it is a very humble one at that, the National Health Service is to me, incredible. If it weren’t for the NHS and the level of care we have experienced so far, I don’t actually know what we would have done. First off, we would be very poor. If we’d have had to have paid for all the consultant appointments, medications, operations, therapies etc we’ve had up to now (like they have to in other countries), we would be in a very different place… Probably living in our car or out of a cardboard box. I literally cannot thank them enough. They’ve not only saved Oscar's life… Twice over, they continue to have an integral part in his care and for that I will be forever grateful.
Since having Oscar, it’s really made me appreciate the small things in life. Before I’m sure I thought I was untouchable. That my poop literally didn’t stink (excuse my french again). I had had this amazing life. I’d followed my dreams and become a dancer, I had a loving family, amazing friends and I’d met the man of my dreams. I remember vividly, Chris and I talking before we got married, saying just how lucky we felt. Bad stuff didn’t happen to us, it happened to others, we thought. We didn’t say that bit out loud…. That would be tempting fate, but I know that’s what I was thinking at least. Stupidly and naively, I believed that.
And I’m not saying for one second, that having a son with DS is the “bad stuff”… Sure it was a shock initially but we got over that. The bad stuff, I’m talking about, was his health. We could handle the DS, but health worries? As a very wise lady once told me (my lovely mum), the only thing that really matters in life, is that we’ve got our health…. and for a while there, Oscar didn’t really even have that.
When I think about him in the early days, I think back to this teeny tiny weak little thing and can’t quite believe that the toddler tearing around the place now, was him. Chris always says his first memory of Oscar was when they handed him over to him, wrapped in towels and these big eyes, blinking, were staring back at him. He needed us then, more than we could ever have imagined.
We will always be eternally grateful to our hospital, St Peters, Chertsey for the care we received in those first few weeks and continue to receive. I am told the neonatal unit there is one of the best in the country and that babies from all over, are brought there. How incredible that it just happened to be where Oscar was born.
After Oz was born he was taken straight up to NICU. It felt like I really only had a few moments with him before they said he needed help. He was born around 1am and a few hours later they took him from me. Primarily I’m told because of his heart… He needed oxygen, his saturation levels were low and he was having problems feeding. I’d had an emergency C Section under General Anaesthetic which in itself, was something I wouldn’t wish on anyone. Everything had been going brilliantly, I’d had an amazing pregnancy, I felt fighting fit. I’d danced Monday to Friday, all day up until 36 weeks pregnant and I honestly felt on top of the world. We had been given no indication throughout the pregnancy that anything was untoward, except, in hindsight a couple of flippant comments from a few people, that now that I think back, might have been telltale signs. Isn’t hindsight a wonderful thing? So many people said to me, that I was carrying really small. Oscar was only 5lbs 2 oz and although not always, babies with DS can be low birth weight. I just put it down to the fact that I was dancing so much. I had an additional scan (which I will come on to in a bit), and right at the very end of the appointment, I remember vividly the consultant saying, “he has quite short legs”. Again, I’m aware that people with DS have short arms and legs in relation to their bodies but it was something that didn’t even register with me at the time. I obviously had had my routine midwife appointments and I recall one in particular, the lady saying “he seems very chilled out in there”. This was, I’m realising now due to the fact that his heart wasn’t as strong as it should be. It wasn’t until my routine 40 week midwife appointment that I went along, completely unaware that in that moment my life was about to take a turn. It was all very relaxed. I didn’t for one second think this was the day I was going to have my baby, but turned out it was. I got up on the table and the midwife continued to talk to me. She paused as she listened to his heartbeat. It sounded normal I thought, but then those machines just sound like a whole heap of noise to me. I’m never quite sure what I’m listening for but I could definitely make out the heartbeat. All she said was “Are you doing anything this afternoon?” The only thing I had planned that afternoon was to go back home and watch Andy Murray in the Wimbledon semi final. It was 2012 and that year, Oscar’s birthday, was the day he became Champion. “It’s just I think you should probably head up to SPH (St Peters Hospital) so they can monitor baby.” She seemed calm enough but I remember driving myself up there, feeling a little uneasy. I decided against calling Chris. He was working in the city and in my mind this baby wasn’t coming anytime soon so there was no cause for concern. I got up to SPH and spent the best part of the next 4 hours sat in triage being monitored. The midwife seemed fairly calm about it all, saying things like, he’s ok but his heart rate is just not where I’d like it to be or he hasn’t moved that much. As the hours passed by I got more anxious. All afternoon, I’d been saying, should I call my husband? And every time she said, no there’s nothing to worry about. But I was by now. She said she was going send me upstairs to the labour ward, just for peace of mind to get checked out by a doctor. She sent me up there with a print out of Oscar’s heart rate and the doctor, said that even though he’s probably absolutely fine in there and even though if we left him, he’d probably stay put for another couple of weeks , he’d feel better if with my consent, we started the induction process.
“So I should call my husband now?”
“Yes you’re having a baby.”
So that’s how it all began. Calm, collected and no real cause for concern. I spent that evening off and on the monitor, bouncing on a Swiss ball, walking up and down the corridor to help bring baby along, watching Chris as he sat on my bed eating grapes. I think back to that moment and we were so relaxed, laughing and joking together. We had no idea that in just a few moments our it was all going to go terribly wrong. The midwife had come in and said that she should probably put me back on the monitor again. It took a while to find the heart beat and regulate but I can remember her saying, very clearly, “If his heart rate drops below 100 for more than a minute, call me,” and left the room. Chris and I sat transfixed on the screen…75, 74, 65, 60….. It hadn’t been that low all day and we definitely didn’t make it to a minute, we rang the bell. The midwife came back in and all she said was “I’m about to press an alarm and a lot of people are going to come running in here, try to stay calm,” and with that the alarm pierced our ears. What happened next is all a bit of a blur. I know what felt like a whole entourage of doctors, anaesthetists, nurses etc came rushing in. I know I had an internal to see how far along I was dilated (which done at speed, ladies, is not fun experience). There was no time to wait, they couldn’t even let me have a section normally as they needed to get him out there and then. The next thing I know i was being pushed down a hospital corridor, being rushed into theatre. Chris wasn’t allowed in with me and he said when the doors shut behind me and the room was empty, silenced from everyone, he had never felt so alone in his life.
So yes, that’s where it starts. That’s where my appreciation for the wonder that is the NHS, started. They were, in truth, my guardian angels. They saved my baby and potentially me that night… And for that, in that moment, I owed them the world. Had that midwife at my appointment not flagged up his heart, who knows if he’d even be here today? Forever grateful.
We were told that Oscar would more than likely spend weeks in NICU because of his poorly heart. He spent days. We were told he’d need to be on oxygen for sometime. He was on it for 24 hours. We were told he would be in the high dependency unit of ICU. He was moved to the next room, where babies with less of a need were, on day 2. We were told that he probably wouldn’t breast feed and that I’d need to learn to tube feed him before I left hospital… But he breast fed eventually. It was an uphill battle and they said they’d prefer us not to leave the hospital without me being able to breastfeed him for 24 hours without the need for a top up… And we did it. On day 9 we did it and day 10 we left. My boy is in fact, a fighter and has been from day one.
Now don’t get me wrong, I am very aware when I listen to other parents, that by comparison Oscar has, until now, come off pretty well. When you google, “health complications that come with having DS” there’s a huge list to say the least. It doesn’t mean to say you’ll have them all… Or any for that matter, but we can tick off a few:
Heart disorders
Bowel abnormalities
Digestive problems
Hearing and vision impairments
Thyroid dysfunctions
Increased risk of infections
Blood disorders
Leukaemia
Increased risk of dementia
Obviously I’ve talked at some length about his heart surgery before now and that for us, has been the major issue. But since surgery coming up for a year ago this May, Oscar is thriving. We’re obviously still regularly being monitored by The Royal Brompton but since having his operation, I have seen a different little boy. Energised, full of life and there appears to be no stopping him. Again, how can I possibly thank those surgeons, consultants, PICU nurses enough?
Around 10% of people with Down Syndrome have problems with their thyroid gland. Oscar happens to be one of those 10%. The thyroid gland is located in the neck and is responsible for controlling your metabolism (the rate at which your body uses up energy). It does this by releasing thyroid hormones into the body. Most people with Down’s syndrome who have a problem with their thyroid, and this includes Oscar, have hypothyroidism, which means their thyroid gland is under active. Symptoms of an under active thyroid gland can include: lethargy (lack of energy), weight gain and slow physical and mental reactions. Thankfully he has never suffered with any of those symptoms. In the UK it is national policy for all newborn babies to have their thyroid function tested. A spot of blood from a heel prick is collected on a piece of filter paper and allowed to dry. Thanks to the newborn thyroid test (often called the Guthrie test) we now rarely have children who suffer grave long-term effects of thyroid deficiency at birth. Every evening Oscar takes his thyroxin tablet. He takes it with no fuss at all as he’s had it from day one. He regularly has blood tests to check the levels of thyroxin in the body and so far so good.
I remember being in NICU when Oscar had just been born and the consultant taking Chris and I to one side to let us know that we’d be assigned a paediatrician to look after Oscar throughout his childhood life and that that this specific lady was someone who’d specialised in DS. I remember being cross at this. This was literally in the first few days of Oscar’s life. We hadn’t had his blood test results back to confirm the DS and in my mind, and it shows you what state of mind I was in, there was a chance that the hospital had got their suspicions of DS wrong. In hindsight, how ridiculous was I to think that they MIGHT have made a mistake but I was holding on to that tiny bit of hope. The consultant told me that this paediatrician would come back and see us later that week… We didn’t turn up. I remember saying to Chris it was pointless and I made him come down to the hospital cafe to have a coffee so we were nowhere near the NICU when she arrived. It was childish and petty… I was running scared.
Thankfully we did eventually meet her and I don’t think she’s held a grudge. She has been there since the beginning and has done everything in her power to get all the referrals he’s needed. We have 6 monthly TAC (Team around the child) Meetings, where all of Oscar’s medical professionals meet up with his paediatrician and Chris and I. It’s our chance to go through all the areas of needs. Each professional gets a chance to talk of Oscar’s achievements and what targets he’s been given to work on next. More importantly it’s for Chris and I to voice our concerns, if we have any and up to the paediatrician to refer us to whatever area of need we feel he requires. I couldn’t be happier with all she has done for our little boy and continues to do. Eternally grateful again.
When Oscar was born he was put onto antibiotics straight away for the only thing they detected in my scan. That he had a dilated tube into his kidney. This has nothing to do with DS, it simply means that he may have been more susceptible to getting urinary infections when he was first born. It’s ironic that I had an additional scan at 34 weeks to check to see if the tube was still dilated, and still the DS and heart defect weren’t picked up.
A few weeks before Oscar’s heart surgery we’d been referred by our paediatrician to go to St George’s in Tooting, for them to take a look at Oscar’s testicle. We’d been made aware that one of them hadn’t descended. Common in little boys but it usually drops at some point during the first few months of their lives. Ozzie’s didn’t. I mean seriously, didn’t my little dude have enough on his plate? He was going in for heart surgery but now they were saying he’d need to go in for surgery on his ball!!!!!! I put my foot down and said that we needed to get the heart surgery out the way and that we’d come back once we’d had the all clear. So in January this year, we spent a disastrous night in St George’s having had his surgery. I say disastrous, the operation was a success but Oscar was not happy at all. I’m no boy/man but can you imagine the pain? Ouch!!!! He was beside himself when he came out of theatre and I spent the night on the ward with him trying to console him as he writhed in pain. I’d had Alfie 5 weeks earlier and was grateful to have a night off from the night feeds…. Karma came and bit me on the bum that day, as it was most definitely not a night off. God bless the NHS and those nurses that brought us painkillers in abundance that night!!!!
Throughout Oscar’s little life, we have had a handful of hospital stays. During the first year before his surgery, we had a few mad dashes up to A&E, with respiratory problems from chest or viral infections. They all resulted in at least an overnight stay. To put him on oxygen, administer the antibiotics intravenously and just to monitor our little man. Never have I been made to feel like a neurotic mother, worrying unnecessarily about him. GP’s, A&E doctors etc have always agreed best to err on the side of caution.
So when I say I’m happy that we live in this country, I say it from the heart. When I get annoyed at the GP or other medical professionals for saying something that hits a raw nerve, I must remember how great a service Oscar has had thus far. And when the doctors receptionist gives me attitude (because apparently we haven’t got happy receptionists in our area), I must breathe and remember that without this service, we’d be living in our car.
Our National Health Service is mainly funded ultimately from our taxes (with a much smaller amount from National Insurance contributions). Other, less significant sources of income include charging overseas visitors and their insurers for the cost of NHS treatment, charges to patients for prescriptions and dental treatment, hospital car parking, patient telephone services, etc. So, the next time I have a moan (and I do moan) about the shockingly pricey car parking rates in our local hospital and how I think I should have my own private space due to the fact we’ve been up there a ridiculous amount over the last 20 months, I should stop and think. That £5 I’m begrudgingly paying to park there, is part of my measly contribution to saving Oscar’s heart or paying towards his medication he needs every night for his thyroid. So National Health Service, Thank You… From the bottom of my very full heart.
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