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The hopes and fears of a TOF Mum.

My heart, my world.


 
It has been a while since I wrote a post that was dedicated to Elijah’s condition Tetralogy of Fallot (TOF) which is a CHD (Congenital Heart Disease) but something struck me recently. I had a small concern that Elijah may be sweating a bit too much in his sleep, so I wanted to see what other TOF/CHD patients had to say or better still a parent’s experience of having a TOF child. So, I did what every modern parent does, I Googled it. I found a couple of Mumsnet threads, and one blog post from around 3 years ago but there isn’t really anyone out there that is being honest and sharing what it is really like to have a child with TOF.

When I started my blog back in 2015, it was predominately focused on Elijah’s health and the journey we took from NICU, to open heart surgery and beyond then as things settled down I began to focus on other parenting subjects. As truth, be told Elijah’s condition does not tend to impact our day to day lives as much as you think it does and we are incredibly lucky to be able to say this. But it isn’t to say that we live a normal life with a TOF child as we most certainly do not.

Take this evening for example, I am sitting on the eve of Elijah’s annual appointment with his heart consultant from Great Ormond Street. This is our 3rd or 4th time we have met the consultant who is very kind and understanding especially of a slightly neurotic mother like me, but honestly it does not get easier and I am shitting myself.

You would look at Elijah in the street and unless you saw his chest scar could never guess he has a heart condition and had open heart surgery which saw him receiving an artificial valve. He has never fallen behind, has so much energy bordering on hyperactive, eats well and is a normal three-year-old. There is however a fear, deep in my stomach that looks can be deceiving, that I cannot see what is going on inside his little chest and something is wrong. That our luck will run out and we will get the news that his heart is failing again.

Of course, I know the signs to look for and Elijah displays none of them, but the fear is ever present in my gut. To a point that when Harlow was ill the other week and we took him to the GP who listened to his chest my breath caught in my throat and I couldn’t breathe until she said he was okay. Your child being diagnosed with something so serious as a heart condition that will affect him for the rest of his life and gives you a fear that will be lurking away in you forever.

I wanted to write this post to fill the gap, to provide some sort of reference point, to give someone out there who has a child with TOF or CHD some hope. When Elijah was first diagnosed I searched the internet for success stories of those who are living life to the fullest with CHD. I am lucky, that in starting my blog I have connected with some amazing heart warriors that I can turn to, and some amazing parents of heart kids. One family is very present in my thoughts after their brave little heart warrior just underwent another heart surgery. To her, and her amazing family I think you are all just so brave, so amazing and such an inspiration to me.

The very first day Elijah was given his diagnosis at 3 days old. I felt so alone. No one I knew had gone through this, no one I knew had a child with this condition. I hadn’t even ever heard of it until we were told that our son has a life-threatening heart condition that would require surgery, or he would die. The surgery also came with the potential to kill my child. It will always be something I do not think anyone in our close circle would forget. The worry, the pain, the elation when we came home with our little boy. Then as things settle just as though when you come home from NICU things fade, if your child looks well, things are slowly forgotten. But not for the parents of a heart child.

Day to day life is likely to be the same as many for Elijah, too many biscuits, too much C Beebies, temper tantrums and potty training fails. I am mindful if someone we know may be sick, I make the call if I send Elijah to nursery knowing there has been an outbreak of something such a chicken pox. I make sure he and all the family have up to date flu vaccines and freak out as soon as it gets cold. From the end of Oct to April he tends to sport 100 layers. I am weary he rests when he is sick, and would rather he spends time off nursery to get well. He is on no medication, and there to date are no restrictions.

I want him to be anything he wants to be, currently that’s a firefighter. I know deep down and being very realistic that he will likely need another surgery to replace the artificial valve he has. The best we can hope for is to have it in his late teens and surgery procedures are evolving where he may not even need to have it via open heart surgery. I want you to know that Elijah is living life like any other normal little boy and there is hope. It may not feel like it right now, but there is always hope.

For now, all I can do is sit here and try and stay calm for Elijah who doesn’t have the best track record with complying with Doctors and keep my fingers crossed for the best. That we are told that nothing has changed, the murmur is the same, the regurgitating leak has not worsened, and the valve is working well, and we will see you again this time next year, no further tests, no medication and no surgery.

I will update you all of Elijah’s progress tomorrow.

Comments

  1. Being a heart parent comes with so many hidden extra fears and worries. It makes such a difference when you can connect with other parents who have had similar experiences. It made a huge difference to us on our journey. Thank you too for keeping us in your thoughts. Jessica is doing well and it is a huge relief to be on the other side of surgery once again! Glad to read that Elijah’s check up went so well x

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