Updated: Feb 9
you just been told that your unborn baby or new born has a heart condition, or maybe you know someone that does and you wonder what life must be like for them compared to other families with heart healthy children. #classonglass #hypoplasticleftheartsyndrome #hlhs #halfaheart #chd #hlhsawareness #chdawareness #heartmum
As you know there are hundreds of thousands of parents in this world who are all completely different from one another. In this blog post I'm going to tell you what its like for me personally to be a mum to a child with a heart condition called hypoplastic left heart syndrome.........born with only half a heart.
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In the beginning
Way back in the year 2000 ( Is it just me or does a song pop into your head after reading that) is when my son Lee’s heart condition was picked up during a very late scan, I was thirty eight weeks pregnant and they had missed the heart condition during the detailed twenty week scan.
Once I was told of the condition, which I go into in more detail on a previous blog, I felt a little lost and confused. mainly because no one really had any great information on it, so there really was not that much I could read up on. There was no facebook around at the time, and the information I did find filled me with the absolute fear.
I was flown down to Birmingham in a tiny plane which only had six seats so I could have Lee at the Birmingham woman's hospital. This scared the total cr#p out of me because I was taken away from everything that I was used to, I had not long had a tour round the hospital in Scotland during one of my antenatal classes where I was meant to be giving birth so I was leaving my comfort zone but had no choice in the matter it had to be done.
When I arrived at the hospital I was shown around the neonatal department as that is where Lee would be going straight after birth. I will never forget my visit here, its been over eighteen years since I was shown around and I remember it as plain as day. There was a tiny premature baby on what looked like a giant bed only because the baby was so very very small, so small in fact that they had a cotton wool ball in place as a nappy. I had never seen a baby that size before.
During the birth I had seven people in my room, midwives, doctors and nurses. This was my first child and I was always told by my mum that when you give birth you leave your dignity at the door........ain't that the truth!!!!!! I felt like I was on stage and all eyes were on me or should I say part of me......As soon as Lee was born I managed to hold him for a whole minute before they whisked him away to the neonatal department.
I was then left with just the one midwife who instructed me to move from the bed I was on and hop over to the one they brought in right beside me.....now this is all fine and well, but for someone who has been given an epidural and could not feel anything from the waist down this was a bit of a challenge, with no help what so ever from the midwife I slowly managed to slide over, there was no elegance whilst doing this, let me tell you. She then informed me that she was going to clean me up and then came at me with what I would describe as equipment someone would use to clean their car. I can never look at a giant car sponge in the same way after that. I was waiting for her to bring out the the wax and polish next but thankfully that never happened.
Normally once you have had your first baby they may keep you in for a night are two until you are confident and the midwives are happy with you, then you are free to take you baby home....This was sadly not the case for me and many heart mum's. I was in hospital for a total of forty days and forty nights after I gave birth to Lee. I will always remember this as it reminds me of something out of the bible (I would just like to point out I'm not Godly) Lees first open heart surgery was when he was only three days old.
During the time in hospital (Birmingham children's hospital) after birth and when Lee had his three open heart surgeries.......well four as he had to have an emergency one. You run on auto pilot, you have no option but to go with the flow. There was a lot and I mean a lot of just sitting and waiting, everything took time, and I had all the time in the world as long as he was safe. While in hospital it can be a bit of a shock at first when you see just how may machines your child is linked up to, but after a while you stop noticing them and you become more aware of the noises the different machines make and you know what each machine does and what all the numbers on the screen actually tell you.
Lee was tube fed in hospital and I had to be trained not only on how to tube feed him but also how to change his feeding tube, for some reason this never bothered me, as weird as this sounds it reminded me of when a horse gets scoped, that where they put a camera up the horses nostril and down its throat. I have had to hold many racehorses getting this done so for some reason sticking a tube into Lees nose and into his belly did not faze me one bit. You just had to make sure that the tube did in fact go into his belly and not into the lungs, that is why they train you and you have to be able to do this confidently and correctly three times before they would let you do home.
As Lee was my first child I couldn't compare it to any of my other births so life in hospital to me was normal, I felt safe in the hospital because if anything was to go wrong I couldn't be in a better place.
What I remember most about Lee being in hospital was during the times he went in to surgery, there really are no words to describe the hopelessness that you feel when your child is taken through those doors to have open heart surgery. You are completely powerless to do anything, not being in control of something is not one of my strong points, I need to know what happening, what could happen, will everything be okey..........and all these were uncertain. I kept thinking I shouldn't be here, Lee shouldn't be here....we should be at home doing normal things that other new mum's are doing, I shouldn't be thinking of death 24/7 and trying to mentally prepare myself if things didn't go well.....this was definitely not how I had imagined being a new mum would be.
Leaving hospital with your new born should be an exciting time, you should be making plans for days out with you new little family.......except for me the idea of leaving the safety of the hospital was terrifying. I could never plan more than one day ahead and with the words of the doctors and nurses said to me on numerous occasions still clearly ringing in my ear.....enjoy him while you can..........make every day count ... did not have me skipping out of the hospital full of the joys of spring.
Lee was on different heart medication that had to be taken at four different times of the day, he had to be bottle fed at first and then what ever he did not manage then the rest I tube fed to him, this was done every four hours continuously around the clock this included through the night. He was on special baby milk. His tube had to be changed roughly every ten days or so or if he had managed to pull it out by himself. He absolutely hated getting his tube changed, don't really blame him, its not something id like done to myself.
I was on bug alert constantly, anyone with so much as a sniffle was not allowed to be in the same room as him let alone touch him, people just didn't realise that a cold could sent us straight back into hospital.
So......what' it like being a heart mum
Well that answer really depends on the kind of person you are and what your own mindset is like. Being a mum to a healthy heart child can be worrying enough for some parents especially if its your first.... by the time you have had your third or fourth your an old pro at the game.
Heart mum's however worry more on the medical side of things and what the future will hold for their child or if there will even be a future at all. You see when your told your child will probably not live past the age of three you can imagine for a moment just how those first three years would go.....stressed....worry.....panicking over the slightest thing.....booking doctors appointment at first sign of a runny nose...the list goes on.
There is many a time I thought Lees heart would just stop beating in his sleep and I wake one morning but he would not.
I decided one day that I was not going to live that way anymore, It wasn't helping anyone especially my mental health. I realised that no matter how much I worried and panicked and maybe over thought every thing, that it did not change the outcome....what will be will be
When I talk to people about Lee’s heart condition they always comment on how well I'm doing and how calm I seem, If only they could get inside my head, even though I said I decided not to be like that I still have a constant level of stress going on inside which I manage much better now compared to at the beginning.
When I was able to cut down my worry and stress and change my mindset it made for a better life for Lee, I let him just get on with things like everyone else his age. He had a bike, played football if he wanted, but its probably a good thing hes not that interested in the sport. He had his own trampoline which he was never off during the summer he went swimming and played in the snow. It was a normal up bringing like all his friends so he was never left out or made to feel different from anyone else. Wrapping him up in cotton wool to me was never an option.
There are a lot of heart mum's out there....and you may be one of them, that are not coping so well and you suffer from anxiety. You can't seem to bring yourself to think about anything else other than the fact you know you may loose your child. You hide away in the house with your new born or young child because you fear what may happen in the big bad world out there. If this sounds like you then I urge you to go speak to your doctor or If your not keen on that then someone....any one. Sometimes all you need is someone to talk to, and its absolutely okey not to be okey.
Please don't let these feelings control your life and stop you from living, like I said above, no matter how much you worry, it will not change anything apart from making you sick in the long run. Stress and worry unfortunately go hand in hand, just get it to a level you can control.
If I didn't control mine I would hate to imagine the kind of life I would of provided for Lee, If I had stopped him from doing all the things he wanted to do through fear that he might get hurt or tire himself so much he ended up in hospital.
I'm happy to say Lees had a great childhood, being eighteen now he does all the usual things his friends are doing.......eats me out of house and home........plays Xbox till the wee small hours of the morning......hangs out with his friends.......goes to house parties........has house parties, which his smart mum aka me finds out about.......I mean I come home from a night out and the house is really tidy....Lee tidied???...instant red flag LOL and occasionally he goes to the pub.
So there we have it, being a heart mum is like one big giant roller coaster of emotions, some of it we have no control over, while other parts how things affect us depends on how we let them. I do not like that saying....just take it one day at a time....my advice is take control and just live your life and be happy.
If you are interested in reading books on mindset, I can recommend a few here, or maybe you have never read anything on mindset, well here is a good place to start.
You Are The Placebo - by Hay House Inc.
Breath by Breath - by Franklin Watts
Unchain Your Brain - by Larry Iverson
How To Have A Beautiful Mind - By Ebury Digital
Positive Power - by West coast Authors Publishing
The Positive Shift - by BenBella Books
Gift Of Happiness - by Create space