I get it. Talking about learning difficulties is awkward and uncool. People don’t know what to say so they just skip past it, as if I haven’t even spoken. I do get it.
But I still get pissed off. It still pisses me off that my thoughts and feelings aren’t acknowledged. Not because I’m important and deserve to be heard, but because I’m seemingly being ignored while parents of typical children are eagerly chatting away to each other.
Remember that scene in ‘The Beach’ (the Leo movie with the All Saints song) where a man with a manky leg is taken to the opposite side of the island to fester and die alone because his presence is ruining the enjoyment of the idyllic beach for the other non-manky legged inhabitants? Well I’m the man with the manky leg. Me talking about the struggles I have with my child with learning disabilities pricks the parenting bubble of the ‘normal’ mums and they just want to enjoy that god damn beach without me ruining it for them.
I commented on a well know blogger/vlogger’s Instagram post the other day. It was World Book Day and she’d posted some corny shit about how children are made readers in their parents’ laps. Then some other earnest parent smugly commented ‘a child who reads is an adult who thinks’, as if she’d imparted some massive and important pearl of wisdom.
My comment wasn’t bitchy or self pitying, I just wrote that my child had no interest in books due to his learning difficulties and I wished he would sit on my lap to read. I suppose I was trying to make the point that it isn’t always down to the parent if the child isn’t into books. And it doesn’t mean that my child will not think as an adult because he didn’t read ‘That’s Not My Train’ as a 2 year old.
Straight underneath my comment an online children’s store account wrote ‘reading on laps is the best!’ and then went on to try to flog the blogger a book that was conveniently stocked in their shop. They totally ignored my comment. Insensitive. But it’s okay, they had a book to flog.
What pissed me off though, was that this blogger then replied to the childrens store account but ignored my comment completely. Just totally ignored it. Like it wasn’t even there. And she’d seen it because it was directly above the one she was gushing over.
Okay, she doesn’t have a duty to reply; okay she might have been busy; okay she might have overlooked my comment and not seen it. But I doubt it. I think it was too awkward and she didn’t know what to say. So she ignored it. It happens a lot.
Some of my own friends ignore the issue. Just never mention it, like it isn’t happening. And if I start to talk about it they close down; don’t reply; change the subject. One even told me she wasn’t being rude, she just didn’t know what she was supposed to say and it made her feel uncomfortable. Bloody hell. Sorry about that.
Other friends try to help. Send me links to articles about how one boy ‘beat his autism’ when his mum cut out gluten from his diet. Or tell me how a friend of a friend had a son who didn’t start to talk until he was 5 and now he wouldn’t shut up. Or tag me in posts on Facebook about how great dogs are for children on the spectrum.
Some friends tell me what they think I want to hear. Try to convince me that there isn’t actually a problem, he’s ‘just a typical boy’, he will ‘grow out of it and be fine’. I actually feel for these friends because I too can be guilty of telling people what I think they want to hear. People pleasing. It’s an affliction.
A few friends just listen. Even fewer actually ask me how my boy’s doing. How I’m doing. Ask me how I’m feeling, if I’m getting enough sleep, if I’m getting enough help. They tell me they admire my strength but if I’m not feeling strong it’s okay to lean on them. They’re there for me. They don’t have the answers but they’re there for me. These friends are few but they’re invaluable.
If you have a friend like me I implore you to be amongst the latter group of people. Don’t profess to know how they feel, just ask them and listen. Just be there and let them know you care about them and care about what they’re going through. I never expect anyone to give me a solution but sometimes I just need to be able to talk and put my worries out there. Without fear of upsetting someone with my sadness or making them feel uncomfortable.
And if you don’t have a friend like me but if someone happens to mention their child’s disabilities to you, for the love of God don’t ignore it. Respond to whatever they’ve said in some way. Being a special needs parent is hard enough as it is without feeling we’re being ignored.
We’re not looking for solutions and answers, we just need to talk things through and let out our worries/fears/emotions sometimes. Or in my case with the blogger, give another perspective; speak out on behalf of those who are different. Remind people that not everyone is going down the same path with their children and we matter too.
Once again I need to start by apologising for neglecting my poor little blog. Life has been quite hectic and I just haven’t found the time but I’m back now.
So, since my last post on Omar, (Finding Out Your Child Has Learning Disabilities) which was about a month ago, there have been some developments. The main one being: we have some more words!!! For such a long time he would only say two words (oh no and ball) but over the past 4 or so weeks this has increased to 20 words! (Not that I’m counting or anything.) His receptive language (understanding) also seems to have improved a lot and he generally just seems to be engaging more. The little toad still hasn’t said mama though, I’m so desperate for that word to come!
I’m not sure whether these steps forward he has taken can be put down to the brilliant speech therapist we have started to see; an online video program we started called Gemiini; or whether it was just time for him to start talking more. But I’m just so glad he’s moving in the right direction and we’re going to keep doing what we’ve been doing and hope it continues.
With each new word he says I get ridiculously excited and it lifts me for the whole day. The first new word he said spontaneously was cat. We were walking down the street and he pointed to a cat and said ‘cat’. I wasn’t quite sure I’d heard it right and didn’t dare believe it. But then later that day he also said cake and balloon. I was so overjoyed but didn’t dare revel in it too much in case it was a fluke and he’d be stuck on those words for months and months and months, the same way he was with ‘oh no’ and ‘ball’.
But his words continued to increase and I’m so proud of him. I make him work hard with the tasks the speech therapist has given us but we make it fun too and so far so good.
He also had an appointment with a paediatrician a few weeks ago. She was great and spent over an hour with us. She saw Omar in action; he was in a whirlwind mood and kept filling toy pans up in the doctor’s hand washing basin and then trying to soak her with them (I know it shouldn’t have been funny but it so was). He also managed to hit her on the head twice with a ball, clapping and cheering afterwards both times (which leads me to believe her head was the target). Anyway, she didn’t really tell me anything I didn’t already know in terms of his development. He is delayed. We knew that. But she did say ‘he doesn’t have autism’. She actually said it like that. Not that she doesn’t think/believe/suspect he has autism. Just that he hasn’t got it. I don’t know whether she’s able to know that just from one hour with him; I thought a team of people would need to be involved to make that kind of decision. But anyway, that particular paediatrician doesn’t think Omar’s on the spectrum and neither does his speech therapist. Honestly, I don’t think he is either. I’m not ruling it out though. Just in case. His behaviour definitely isn’t typical but it doesn’t seem to fit with autism either. I’m stumped to be honest.
Omar has started at a new pre school recently too and the staff there are so supportive. He’s only been 6 times so far but I’ve got high hopes about the place. I’m especially hoping they can help with his challenging behaviour. They seem firmer with him than his last nursery and are working on boundaries, which can only be a good thing because he has no concept of them at the moment.
So at 2 years 10 months Omar says 20 words spontaneously and copies around another 5. I know this is waaaay behind typical kids his age but he is talking and at one point I genuinely feared that he never would. His 25 words bring me joy.
On the way home from pre school, when he points to a tree and says ‘tree’ I’m so so thrilled. I’m ecstatic! I’m walking on air! Until behind us, I hear a child younger than him taking in full sentences, telling their parents what they did that day.
Then it hits me again how delayed Omar is and the grief comes creeping back in.
So I have to block all other children out at the moment. Because comparison is the thief of joy and I won’t let anything steal this joy. For now, other children are irrelevant. Even yours. Sorry. I will still be pleased for you when they reach a milestone or make you proud. I will like your Facebook posts and leave kind comments on your Instagram photos. And I’m not being fake, I am genuinely celebrating that achievement with you. But I’m ignoring the age of your child and I’m oblivious to their stage of development. It’s the only way at the moment. I need to preserve my joy.
Things keep happening to me that only happen to other people. I’ve already blogged about my second baby being born with a congenital heart defect and having open heart surgery when he was 2 days old. That happened in July last year. When the doctor first told me, hours after Zaki had been born, I thought to myself ‘this can’t be happening because I’ve read about this sort of thing but it only happens to other people‘. Well it did happen and we got through it. But I’ll admit that I got through it by the skin of my teeth and almost lost the plot more than once.
I took Zaki home and genuinely believed that once we were all settled my little family would be in for an easy ride for a while. At least a little while. If not forever. I mean, after something as terrifying and traumatic as that how could the universe possibly heap any more shit on us?
Unfortunately we didn’t qualify for the easy ride and more shit was on its way.
Within days of being home I started to realise things weren’t quite right with my oldest boy, who was 2 years 1 month old when Zaki was born. I wrote about some of my my concerns that he still wasn’t talking here. Well, he’s now 2 years 9 months and still not talking. He still hasn’t said mama or mummy…
If you read my blog regularly you’ll have realised I’ve been quiet lately. Not just here but on social media too. I’ve been trying to come to terms with the fact that my gorgeous boy, the kid that changed my life and taught me what true love really is, has learning disabilities.
Now I’m coming to terms with it, and I fully understand what it means, it’s actually not as scary as it sounds. But at first I was an absolute wreck. It was all I thought about and I spent every waking moment obsessing about it and what it meant. I cried and cried and cried. Then I cried a bit more. Mostly because I was scared. I had no idea what the future would hold for my sweet, precious, gorgeous, innocent boy. Well I still don’t. And I’m still scared and I still cry. But much, much less now.
He hasn’t had an official diagnosis yet but I’ve had enough dealings with doctors to recognise the warning shots that we’ve been given from them. And I’m switched on enough to realise that he definitely has learning disabilities.
It all started to become clear when a paediatrician carried out a hearing test on Omar about 3 weeks ago. This was after 12 sessions of speech and language therapy hadn’t really had much effect. The paediatrician told me that Omar was delayed not only with speech and language but also with social and emotional development. That set me off on a crusade of Internet research, which although can be hit and miss, I have to say, did prepare me for what was to come. I read that a delay in 2 areas or more means Gloval Development Delay (GDD). And GDD means learning disability. I still hadn’t really accepted it though. But deep deep down, I knew.
I found an amazing group on Facebook, of parents dealing with similar situations and through that group I found a lovely, supportive beacon of light in the form of another blogger. She prepared me for the emotions I was about to go through. She gave me hope and positivity too. She has been nothing short of amazing. Even though we’ve only messaged online and I haven’t actually met her, I feel like I’ve known her for years. She’s called Janine and she’s great, check out her blog here – Unhinged Mummy.
I finally, properly, fully came to terms with reality a few days ago when a private speech pathologist told us that Omar is severely delayed and is operating at a level at least a year younger than his actual age. She predicts that he will talk but not for around another year. Although obviously she can’t guarantee it. I took comfort in that though and I’m praying she’s right.
She used the terms ‘learning disabilities’ and ‘special needs’ and it was hard to digest but once it had been spoken out loud by a professional there was no going back. It was out there and I had to take a deep breath and do what needed to be done to help my boy.
These years are so so important, if gains are to be made, they will mostly be made before a child is 5. I keep hearing that early intervention is the key. He needs as much support as possible as soon as possible. Great! Let’s put it in place. If only it were that easy…
Everything takes so long and services have been ruthlessly cut, meaning there just aren’t enough resources to go round. I’m already fighting and battling to get my son the help he needs and I’m only a few weeks into what it going to be a really long, hard journey. It’s actually so cruel, the way this Tory government is slashing funding for services. Services for the most vulnerable in society. It actually disgusts me, actually physically disgusts me. Anyway, I digress…
So back to how it feels when you find out your child has a learning disability. Grief. That’s the overwhelming feeling. Nobody has died but there is a sense of loss. Loss of the child you thought you were going to raise. That’s not to say I love my baby any less, or wish he was someone else. Of course I don’t. I wouldn’t change him for the world and that’s the truth. But I am so,so sad that his life won’t be as easy as I thought it would be. He will have to work so much harder to achieve every milestone and it just all seems so unfair.
Aside from the grief, I also feel a huge amount of pressure to do everything I can to help Omar to develop and also get him the professional support that he needs. I’ve already hounded his health visitor and early years co-ordinater. I’ve contacted pretty much every nursery and pre school in the area and been to look round a few, trying to figure out where he will get the best help. I’ve spoken to professionals who should only really get involved after a diagnosis, just by being pushy and pressing for help. I can almost hear their eyes rolling when they answer the phone and it’s me again, the pushy mum in the early stages of accepting her child has learning disabilities. But I don’t care. I’ll gladly be a pushy, embarrassing mum if it helps my boy.
It’s a lonely situation to be in at first. It feels like everyone else is going in one direction with their kids and I’m going in another direction with mine, to a place unknown. But slowly I have started to realise that Omar is still Omar. Nothing has actually changed, it’s just that now I’m more aware and now I know for sure he’s different to most other kids.
Maybe harder times are yet to come. We don’t yet know the cause of his delays or how much progress he’ll be able to make. Maybe I’ll be a wreck again once he has an official diagnosis, or if his speech doesn’t progress. But for now I’m trying to take each day as it comes and see the positives.
So here we are. One boy with learning disabilities and one boy with a congenital heart defect. It’s not the life I thought we’d have but it’s the only one we’ve got so we’ll live it together and just as before, I’ll be doing everything I can to make sure it’s a happy one for my beautiful boys.
Yep. Philip Larkin hit the nail on the head with ‘This Be The Verse’. We can all probably attribute some of our issues to our parents and the way they did (or in some cases didn’t) raise us. Even if they did their absolute best Even if they were attentive and doting and as mumsy and dadsy as could be.
And if we know that our parents messed us up then we have to know that we’re messing our kids up. And we can’t stop because we don’t even know we’re doing it.
But it works the other way too.
They fuck you up, those kids you had.
They make you feel helpless, useless and like you’ve lost control.
And that pretty much sums up how I’ve been feeling for the last ten days. I don’t mean that I haven’t been coping with the general parenting stuff or that I’m tired or my house is a tip. Well yeah, that too. But it’s more serious and it’s got me feeling like absolute crap. To the point that I couldn’t face writing any blog posts or even watching tv. I just wanted to cry and sleep. Sleep brought sweet relief from having to think.
You might have read about my baby Zaki and his heart. Open heart surgery and a 3 week stint in intensive care saved his life but he so very nearly died and life was hell for a while. Then it got better and I dared to think that we might be in for an easier ride for a while. Because we deserved it after what we’d been through, didn’t we?
I know it doesn’t really work that way but I thought that after something so awful, that was our fair share of crapness done with and there’d be nothing else major coming up. But yeah, it doesn’t work that way.
I’m not quite ready to explain just yet but there are things going on with my oldest boy that are breaking my heart. I don’t have proper answers yet but what I do know is that we’re going to be in for a tough time of it. Again. And yes, I am feeling sorry for myself because quite frankly, it’s not bloody fair.
I’ve been a total mess but I’m starting to pull myself together now, for his sake, so I can get him the help he needs. I’ve done an awful lot of crying and wallowing though and I’m guessing there’s more to come.
See, this is how our kids fuck us up. They make us vulnerable because anything that hurts them or impacts on them in a negative way, hurts us a million times more. And I’ll be honest, I find it hard to deal with. Especially when everything is totally out of my control and nothing I do will change the outcome.
I’m sure it’s not healthy to love our kids to the extent that we do. For our whole happiness and wellbeing to depend on their happiness and wellbeing just cannot be healthy. And that’s how they fuck us up.
Get out as early as you can,
And don’t have any kids yourself.
Lately I’ve found myself telling people they really ought to consider not having any kids… ‘I mean, if you can live without them, do. Don’t put yourself through it…’ I said.
Now that my kids are here I love them with every fibre of my being, of course. I couldn’t live without them. But if I could stop my currently childless friends going through the pain that they bring, I would. I don’t buy into the ‘oh you need the tough times to appreciate the good times‘ school of thought either. I can do without the tough times. Honestly. They do nothing for me.
Just give me the good times, please. I promise I’ll appreciate them.
February is Congenital Heart Defect Awareness month. You might have read my post about my baby, Zaki and his broken heart and how his life was saved by some amazing cardiologists, surgeons, consultants and nurses. Our outcome was a happy one but we all would’ve found it so much easier to cope if we’d been aware and been prepared.
Before Zaki was born I knew absolutely nothing about congenital heart defects and assumed that if there was anything wrong with my baby’s heart it would have been picked up at my 20 week anomaly scan. Wrong. Only 50% of the type of defect Zaki had are spotted during the anomaly scan. When I was told about the diagnosis I wish I’d known more about it; instead I felt confused and helpless. I’m passionate about raising awareness wherever I can now, so here are some helpful facts about congenital heart defects:
Congenital heart defects are problems that have occurred with the structure of the heart as it was formed (‘the plumbing’)
There are 18 recognised main congenital heart defects, with variations of each one
1% of babies will be born with a congenital heart defect and it is the most common defect in newborns
That’s 12 babies a day in the UK that are affected
Out of those 12 babies, 4 will have been diagnosed pre-natally, 4 will be diagnosed shortly after birth and 4 will go home undiagnosed until they fall ill or die
The heart is formed within the first 6 weeks of a foetus’ life and the defect has probably occurred before the mother even knows she is pregnant
Congenital heart defects kill twice as many children as all childhood cancers combined
Scary stuff isn’t it? But it isn’t all bad news. With early intervention 90% of babies born with a congenital heart defect go on to live happy, long lives.
There really isn’t anything a mother can do to prevent her baby being born with a congenital heart defect but there are steps that can be taken to make sure it’s picked up as soon as possible.
At the 20 week anomaly scan the following questions can be asked of the sonographer:
Can you see the 4 chambers of the heart?
Are there 2 upper chambers and are they controlling the blood flowing out of them with valves?
Are there 2 lower chambers and are they controlling blood flowing out of them with valves?
Do the two great arteries (aorta and pulmonary artery) cross over each other as they exit the heart?
Are there any holes in the wall between the two lower chambers?
Can you see any abnormalitiesat all with the heart?
If you are pregnant, write those questions down, take them with you and ask. It’s worth it. The sonographer might not be able to answer all of those questions and might put it down to the position of the baby. If that happens offer to go for a walk and come back in 10 minutes. You might sound like a pushy mother-to-be but who cares? It might just save your baby’s life. I so wish I had asked those questions. Knowing about a congenital heart defect prior to the birth increases the baby’s chances of survival and also means the parents can mentally (and practically) prepare themselves for what’s to come.
There’s an amazing charity called Tiny Tickers who do great work in funding training for sonographers so that more CHD’s will be spotted at the anomaly scan. You can order a card free of charge from the Tiny Tickers website here which you and the sonographer can go through together at your scan if you’d prefer to do that rather than ask the questions above.
If a congenital heart defect isn’t picked up at the 20 week anomaly scan there are signs and symptoms that might become apparent once the baby is born:
Cyanosis (skin looks blue, especially hands and feet)
No interest in feeding
Fatigue (baby will not wake)
If you have any concerns AT ALL please insist that a pulse oximetry test is carried out on your baby. It’s a really quick, non invasive test that involves a sensor being placed on a finger or toe. The oxygen saturation levels (sats) in the blood can be measured that way and if they are lower than expected, that suggests a problem with heart function and further tests can then be carried out to establish exactly what’s going on.
Don’t be embarrassed/shy/too polite to ask for that test to be carried out if you are genuinely worried that your newborn isn’t behaving as he or she should. That simple sats test saved my baby’s life. (For the first time, his life was about to get saved several times over the following weeks but that’s another story.) Don’t sit there quietly panicking, just explain your worries and ask for the test.
If you go home with your baby and later notice something isn’t quite right go to a&e. Heart defects are time critical and every second matters. Don’t worry that you are being over-cautious, just get your baby checked out. Your instinct might save their life.
Of course 99% of babies do not have a congenital heart defect so please do not let this post worry you sick. The chances are that your baby will be absolutely fine. But it doesn’t hurt to be prepared. Something that I definitely wasn’t when I was told there was something wrong with my baby’s heart a few hours after I had given birth.
If you find yourself in the position that I was in try to take comfort in the fact that the cardiologists and surgeons will do absolutely everything possible to save your baby and above all else, stay strong.
This is a pretty heavy subject matter for a blog post but what happened changed me, it changed my outlook on life and it changed the way I think and even the way I feel. I have a need to write about it. So here we are…
On 17th July 2015 at 4.48am I gave birth to my second baby boy, Zaki. I’d had a c-section with my first and I was pretty pleased that I’d managed a vaginal birth with 8lb 5 Zaki, mainly because it meant I could go home soon and bask in the post-birth afterglow and mist of love that surrounds you when you’ve just had a baby, and be with my two precious boys. Or so I thought.
Everything seemed fine at first. I took some snaps of my new arrival and texted my nearest and dearest to let them know that he’d arrived.
Zaki took his first feed from me. Not much, hardly anything really. But hey, he’d just been born, he needed a rest, so we let him off. When I attempted another feed around an hour later Zaki wouldn’t wake or attempt to drink at all. Not too worried, I told the midwife who was in the room at the time. She suggested we try with a syringe to get him interested and left the room to get one. It just so happened that there was a doctor outside when she opened the door. She asked him if he’d come to check over Zaki. He hadn’t, but he would do, as he was there. I still wasn’t worried.
The doctor started checking over Zaki and after around a minute shouted outside that he needed help. A midwife rushed in. I started to worry. He told the midwife that Zaki’s sats (oxygen saturation levels) were very low. The midwife replied that they couldn’t be because Zaki was “a good colour” and his machine must be wrong. He tried again with another machine; still very low. He told the midwife to get Zaki to special care immediately. There was absolute panic in his voice. I was crying now.
We found out over the course of the next few hours that Zaki had been born with a congenital heart defect (CHD) called Transposition of the Great Arteries (TGA). I won’t go into too much medical detail (if you want to know more this website explains well) but basically two arteries were in the wrong position and pumping blood to the wrong parts of the body. They needed to be swapped over and a consultant who came in especially to diagnose Zaki told us that if something wasn’t done that day Zaki would die.
Zaki was deteriorating rapidly. He was put into an induced coma and onto a ventilator. The air ambulance was called, and he was flown to Leeds General Infirmary within the first few hours of his life. I couldn’t fly with him, I had to say goodbye, knowing that it might be a forever goodbye. Not knowing if he’d be alive when I saw him again. My heart was broken into a million pieces seeing his tiny body in that pod, knowing there wasn’t a thing I could do to help him. I put my trust in the air ambulance doctors who were amazing at trying to reassure me. They told me he was “very very sick but we’ll do everything we can”. The looks on their faces gave more away than their words though.
I was told that as soon as Zaki got to Leeds a procedure called a balloon septostomy would be performed on him to create a hole in his heart so that the blood could mix and more oxygen would be circulated around his body.
The rest of that day is mostly a blur. I don’t remember the journey to Leeds. I do remember that I Googled like mad to try and find out as much as I could about TGA. I’m the kind of person that clings onto statistics, so I was comforted when I read that 90-something percent of babies born with TGA are successfully operated on and go on to live healthy lives with no need for further major surgery. Zaki’s case was more complicated, although nobody knew why until the surgeons actually opened his chest and looked at his heart. But if your baby is born with TGA, the chances are, he or she will be fine.
In Zaki’s case we didn’t know that he had TGA before he was born, it wasn’t picked up at his 20 week anomaly scan and apparently around 50% of cases are not picked up pre-natally. If we had known, Zaki would have been born in Leeds, rather than in our local hospital.
Usually the balloon septostomy will buy time for a baby to grow and become strong enough for heart surgery, around 7-10 days after being born. When I arrived in Leeds I was told that the procedure hadn’t improved Zaki’s sats as much as was hoped or as much as it usually would. Sats should be as close to 100 as possible; Zaki’s were in the 60’s. The doctors couldn’t work out why.
The next day was probably the worst because it really hit home what was happening. The doctors couldn’t understand why Zaki was so poorly. A consultant in the Peadiatric Intensive Care Unit (PICU) told me that “Zaki probably wouldn’t survive”. I looked at her blankly. She said it again. I nodded but I didn’t believe her. My brain wouldn’t let me believe her because it knew that if I did I wouldn’t be able to function.
A few hours later she told us that Zaki was so ill they might have to operate as an emergency that day. It was a Saturday but she had called the surgical team in to discuss whether to operate. She told us that if they didn’t Zaki would probably die but if they did, he was so ill that he would probably die in surgery. I really don’t know how I survived as she was telling me this. I was on autopilot. I was hearing the words but not taking them in. I was responding to her but it wasn’t me speaking. It was decided the doctors would try everything they could think of to improve Zaki’s condition as much as they could and he would be operated on the next day.
Zaki looked so ill that day. His whole body and face were extremely swollen due to the extra fluids that were being pumped into him.
I signed the consent forms. The surgeon and cardiologist spoke at length about the operation and the risks. I only heard “death, brain damage, organ failure”. I begged the surgeon not to let him die.
I was told the operation would last around 3 hours. It was more like 9. The longest 9 hours of my entire life, it felt like days. Some people go shopping, go for a meal, go to sleep while their baby is in theatre. I couldn’t do any of that. I didn’t eat or drink anything. I was in a daze. My stomach was in knots, I could feel my heart physically aching. The last thing the doctor had told us was that Zaki was in a really vulnerable situation and that I had to prepare myself for the worst.
For the majority of the 9 hours I sat in the waiting area of PICU, I moved only to go into a private side room to express the milk that by some miracle, kept on coming despite the stress. The doctors had said they’d come and get me as soon as the operation was over. It was excrutiating and when the nurse finally came to tell us the operation was over I was shaking, through anxiety and sheer exhaustion.
I was taken into a room with the surgeon, a cardiologist and a nurse and it was explained to me that upon opening Zaki’s chest they had found that he had TGA and 2 holes in his heart. But what was causing the biggest problem was his coronary artery, which was too narrow; a quarter of the size that it should have been. That’s the reason he had been so sick. The amazing surgeon, Stefano Congiu, had managed to make it bigger but he had no idea how successful the surgery was going to prove to have been. He’d never performed this kind of surgery before and neither had anyone else. Newborn hearts are the size of a walnut, the suture the surgeon was stitching with was finer than a strand of my hair. That this kind of surgery can be performed at all is a miracle to me.
The surgeon told us that 1 in 4 babies in this situation would die. I immediately flipped that statistic and replied that that meant that 3 in 4 would survive.
While Zaki was in theatre his heart was stopped and he was put onto a bypass machine (called an ECMO machine) so that the surgeon could operate. The ECMO machine pumps the blood around the body, bypassing the heart and lungs.
I’d been warned that he might come out of theatre still on that life support machine so that his heart and lungs could rest, but he didn’t, which I was told was a very good sign. But it didn’t last. After about 2 hours the doctors asked everyone to leave PICU because they needed to implement theatre conditions to put Zaki back on the ECMO machine. His heart was too weak after the surgery and couldn’t function, it was failing, so he needed the ECMO machine to do the work for him while he recovered. His surgeon told us that 1 in every 2 babies in this position would die. Again I flipped it and said “yes but that means 50% survive”. The odds don’t sounded much better when I put them like that.
After surgery Zaki’s chest was left open. I was warned that it would be. I could see his poorly heart trying its hardest to beat. Looking around the intensive care bay I could see that none of the other babies or children were in the same situation as Zaki. He was the only one on ECMO, as well as being on a ventilator and an enormous amount of life support drugs. We were told the situation had to be assessed on an hour by hour basis. The number of consultants, registrars, surgeons and nurses caring for Zaki was overwhelming. Each of them really trying their absolute hardest to save my baby. I owe each of them, and the NHS, so much more than I will ever be able to give.
Zaki’s surgeon told us that the maximum number of days he could be on the ECMO machine was 10. After that the blood would start clotting and there were other risks that came with the machine that would become greater, such as organ failure and brain damage. Also, in their experience, if a heart isn’t well enough after 10 days of rest, it’s never going to be. Each morning an ECHO (scan) was done on Zaki’s heart to assess the function. Each day I was told there was a slight improvement and that’s what I clung onto. As I walked down the hospital corridor on my way to PICU each morning I would beg and pray to God that the ECHO showed an improvement.
I was told on several different occasions that Zaki probably wasn’t going to survive and I should prepare for the worst; that he was deteriorating, that I should call people to come and say goodbye. But I always kept the belief that he could fight through it. I never once allowed myself to fully process that I might not be taking my baby home to meet his brother. And he was such a fighter, he always bounced back after each set back, his strength gave me strength.
After 5 days on the ECMO machine the doctors decided to try to take Zaki off it. It was another agonising wait, this time for 4 hours. But he came off it and his heart and lungs were now working, his body was working, with the help of a ventilator, a dialysis machine and too many drug infusions to count. I was ecstatic, I started to dare to think about taking my baby home one day soon. That night though, Zaki took a turn for the worse. I stayed with him until 4am when his nurse persuaded me to go and sleep and she would call if there was any change. I didn’t get a call and when I called PICU at 8am they told me that Zaki had started to improve again and was doing much better.
Generally, things improved and improved from there on in. We had a few blips, a few blood transfusions, a few bad blood gas results and changes in medication. But we were starting to slowly relax and daring to believe he would be ok soon. His chest was closed 2 days after being taken off the bypass machine and as the sedatives were reduced he became more alert and opened his beautiful eyes on day 11.
Zaki was still sedated and on a huge amount of morphine, which was gradually being reduced. The next big hurdle was coming off the ventilator and making sure Zaki could breathe for himself without tiring. After a few failed attempts he mastered the breathing thing on day 20, which meant that I could finally hold him!!! I was so happy I thought my heart would burst. I still tear up thinking about that moment he was placed into my arms.
He spent 3 weeks exactly in PICU before he was transferred to the high dependency unit (HDU) of the paediatric cardiology ward.
My oldest boy, Omar, only just 2 himself, finally got to meet Zaki when he was transferred to HDU. During the whole time Zaki was in hospital Omar stayed with my parents while I stayed in a house on hospital grounds for families of sick children. The Sick Children’s Trust relies on charitable donations to run the houses and it was a godsend. I missed Omar so so so much and felt unbelievably guilty for leaving him but leaving Zaki wasn’t an option.
After one week on the cardiology ward Zaki was transferred to our local hospital to be weaned off morphine and oxygen and establish feeding.
Days 29 – 42
I had been expressing milk since Zaki was born but my neglected and stressed-out body couldn’t make enough by week 5, so he was having formula top-ups. Because he was sedated for so long Zaki had lost his sucking reflex though, so he was being tube fed. There was talk of Zaki being discharged with oxygen canisters and his feeding tube still in situ but in the end he needed none of that. He started to take his feeds from a bottle, ditched the oxygen and exactly 6 weeks after he was born, on day 42, we went home.
It wasn’t all plain sailing once we got home. Zaki was prescribed (what seemed like) all the medicine in the world. It took me an age to prepare and administer it three times a day. He also had an undiagnosed cow’s milk protein allergy and vomited every single one of his feeds. Omar was confused and annoyed about being left for so long and I bore the brunt of it. Plus I was constantly (and I mean constantly) checking that Zaki was breathing and not blue.
Things have settled down a lot now. Omar loves me again and Zaki only takes two medicines a day. He’s also on hypoallergenic formula and gaining weight well. He had an appointment with his cardiologist this week, who was very pleased with his heart function and how he presented.
Neither Omar nor Zaki will remember those 6 weeks of hell when they’re older, thank goodness, but I can honestly say I’ll never be over it. Sometimes I look back and wonder how I got through the days. I think about the other children that were in PICU over the weeks. The boy that was brain damaged during his surgery, the baby that didn’t make it after her surgery, the 11 year old girl that had such a rare type of cancer nothing was known about it and her mother’s wails as she died.
Me and my baby were lucky. I’ll never stop counting my blessings and I’ll never ever stop championing the NHS for saving my baby’s life.
*Warning: this post contains poo talk and general rankness*
I know I’ve been AWOL for a while and as per my previous post, the reason was my poorly 2 year old. Well, we got the the bottom of the issue (literally the bottom) and he seems to be almost back to his usual self.
He had been vomiting every day, starting around 2-3am, for a week and he’d had diarrhoea as well. So in the early hours of Wednesday morning I decided to take him to a&e because he appeared to be dehydrated and was refusing liquids. And quite frankly I couldn’t handle the prospect of further nights of hardly any sleep.
It wasn’t the first time he’d gone through a longish period of diarrhoea and vomiting either. The previous times our GP had said it was virus and I’d just assumed he’d picked up a bug at nursery. But after the third episode I thought it must be something more than just a bug.
From a&e he was admitted to the children’s ward to be rehydrated and so a few tests could be done to figure out what was going on. Long story short – he was so impacted with poo that the new foods he was eating had no room to digest in his already full gut, so they were coming back up. Lovely. Constipation had been an ongoing problem but because of the diarrhoea I’d assumed he was clear. Not the case. The diarrhoea was food squeezing around the mass of stuck poo, in a desperate bid to escape the overcrowded gut of my son.
As I said, constipation had been an ongoing issue. My second child was born with a congenital heart defect, very nearly died, and was in hospital for 6 weeks after he was born. During that time I stayed in hospital with him, for the most part in a hospital a few hours away from where we live. My eldest had just turned 2 and he stayed with my parents, and although he was well looked after, he was unsettled. It was the first time he’d been away from me for more than a few nights at a time and I was only seeing him once or twice a week when he visited the hospital. It was during those awful weeks that the constipation took hold.
What causes constipation in children?
I had no idea constipation in children was so common until I took my boy to a clinic and it was rammed full of bunged up kids. The paediatric specialist explained that it is really common and there are several causes for constipation in a child; it’s not always as simple as just putting it down to diet.
Illness – a period of illness, just a simple cold or tummy bug, can cause constipation.
Habit – if a child passes a painful stool once they might be fearful of going again and try to hold their poo in. Leading to harder stools and a vicious cycle.
Diet – obviously if a child isn’t eating much fibre it can cause them to be constipated.
Historic – some babies are born with bowel issues and might be constipated from birth.
So how can it be dealt with? Initially I tried all the usual remedies; apple juice, prune juice, lactulose, etc. When they didn’t work my GP prescribed Movicol (a powder that is dissolved in water) but that still didn’t work. What was required was a disimpaction regime, which was started off at the hospital. The backlog (log! Haha!) had to be cleared out so the number of sachets of Movicol I gave my boy was doubled every day until he had the worst diarrhoea anyone in the history of the universe has ever had. I’m talking a tsunami of brown water from the bog of eternal stench exploding from his backside. In fact it was worse than that, I don’t even have the words.
Once the stuff coming out was brown water with bits in I knew he was cleared out and we could reduce the Movicol to a maintenance dose. I’d been given a handy poo chart so I knew what consistency of poo I needed to aim for. (Seriously, I can’t believe the words I’m typing sometimes.)
When a kid has been constipated their colon becomes enlarged (doctors call it megacolon but that makes me snigger!) so Movicol is required, sometimes for years, to help retrain the gut and get it back into shape.
Although the doctors were generally great, no one really told me what to expect with the disimpaction regime or how I would know the poo mass had been cleared out but I found this great website, which has a lot of info: The Children’s Continence Charity. I’d recommend checking it out of you’re ever faced with a poo query.
Or you could always ask me. I’m pretty read up on kid constipation now. Can’t say it was ever something I intended to master but such is a mum’s life!
My son is two and a half years old and he doesn’t talk. He doesn’t say mummy, he doesn’t say daddy. He never has. At the moment the only thing he does say is “oh no”.
As a baby he babbled away, giggled and cooed when I expected him to; there was no sign that he would be late talking or that anything was wrong.
With each day that goes by without him saying anything I get that little bit more worried and that little bit more sad. I’m desperate to have little chats with him; to hear about what he did at nursery; to listen to the nonsense that 2 years olds come out with. I feel like we’re missing out on so much. And I feel guilty. Did I do something wrong? Did I not chat to him enough? Did I chat too much so that he couldn’t get a word in?
Last night I dreamt that he was singing along to ‘heads, shoulders, knees and toes’ whilst doing the actions and I was so so happy in that dream.
Until about 4 months ago I didn’t worry at all. He was so good at other things I just thought he was a late talker and he’d soon be chatting away. But when his 27 month check up came around with the health visitor he was extremely behind when it came to speech and language. That included understanding. He didn’t understand simple instructions. He understands more now (get your shoes, get your cup, etc.) but he’s still very behind. And my fear is that he won’t catch up; that he won’t ever talk normally.
I’m a natural born worrier and when I’m faced with something I don’t know much about I read and I research. Inevitably that means a lot of Internet research, which isn’t always a good thing. So far I’ve convinced myself that my boy has several different disorders (speech apraxia, autism, even brain damage) and occasionally convinced myself that actually he is fine and any day now I’ll hear that word I’m so desperate to hear; mama.
We have a speech therapist involved and my son goes to a really good Montisorri nursery 3 afternoons a week and they’re really trying to help him along too. We follow all the advice given; my sister bought him lots of different flash cards; my brother tries to encourage speech through play with his favourite toys; but so far nothing. And it’s really hard to keep up the enthusiasm when you’re faced with a wall of silence.
My family and some close friends know how much the issue is affecting me as a mum. And I end up explaining it to other people too, for example when a friendly old lady in a shop tries to talk to him. “Sorry, he’s not being rude, it’s just that he doesn’t talk yet, he’s got a speech therapist, I’m sure it won’t be long now, he says ‘oh no’…”. I end up with verbal diarrhoea to compensate for my boy’s lack of speech.
People tell me not to worry because worrying won’t change anything. Well, yes, I know that, but to get my brain to chill out about this I’d probably have to be sedated. When it comes to our kids how can we not worry?
And the biggest worry is that he won’t ever talk properly and he won’t lead a happy life. Everything will be harder for him, he won’t be “normal”. It probably sounds dramatic but I’m being honest and laying out my fears. And I know this might seem like something trivial to be fretting over to another parent whose child has a severe disability for example, and I get that, but for us right now for me this is my biggest worry.
For now I just have to keep encouraging him and keep hoping speech will come. On the one hand I’m told that the earlier the intervention the better the outcome but on the other hand no diagnosis can usually be made before a child is 3. It’s really frustrating not knowing what the problem is but the thought of him being diagnosed and labelled almost has me in tears too.
Sorry for the melancholy post, I just felt the need to share. And maybe someone might read who has some helpful advice. Although if I hear “well Einstein didn’t talk until he was four” one more time I reserve the right to climb the nearest tree and lob apples at people’s heads indiscriminately.