Children's Charity for the Freeman Hospital

6 months ago I wrote a blog about my emotions in the days before Seb’s outpatient appointment at the Children’s Heart Unit. Here we are again; our little ‘heart’ hero visits Dr Kirk in the next few days and to prove my point the only thing I need to change from my original blog is the date of the appointment. So much has happened in those 6 months and Seb is growing into the most loving and beautiful little boy, but the fear remains.

On Tuesday 11th December we visit the Freeman Hospital for Seb’s heart outpatient appointment. To say that Nadine and I are nervous would be the biggest understatement in history; to be honest we’re frightened to death. The place that saved our beautiful son’s life is also the place that saw us both experience unbelievable lows and fills us with fear because of what it represents.

Seb’s congenital heart defect (CHD) ‘Tetralogy of Fallot’ would normally require one major heart surgery when very small (Seb had his when he was 16 weeks old) and  the next time he’d require surgical intervention would be early adulthood when the valve in the pulmonary artery (the artery that takes blood from his heart to his lungs) would need replacing. Unfortunately Seb has a slightly more complex problem (awkward little monkey) so will require at least one additional surgery at some point in the next few years. We were first told this when he was 9 months old and it knocked the wind completely out of our sails. We are told that the problems with his heart should not cause us any concern on a day to day basis and there is no risk with his health or ability to take part in the kind of activities a 3 year old tends to enjoy. We were told to get on with our lives in as normal a fashion as possible and at the outpatient appointment they will assess Seb’s heart function and do nothing until such time as his heart has to work harder as a result of these defects. I wish we could take the advice and live our lives like normal and without the constant fear we seem to feel.

Don’t get me wrong, we don’t live our lives in a constant trough of despair; instead we celebrate every single day with our beautiful little boy, on the basis that we came so close to losing him and we truly believe each day is a gift. However as each outpatient appointment looms, the dark cloud begins to come into view. From about a month prior to our visit to the Freeman, we start to consider that now might be the time Seb needs to go back into theatre. When Seb had his first surgery I can still recall with a frightening clarity kissing him on the head and watching as Nadine carried him into theatre; I sat slumped sobbing my heart out, unsure whether I would see my son alive again. The 6 hours that followed were the longest of our lives as we walked helplessly around Jesmond Dene, and the time we spent on Paediatric Intensive Care was the hardest week of our lives. But all of these things I can cope with, because I know I have the strength to do what is required and will support Nadine no matter what.

My biggest fear is that Seb is now old enough to have a small understanding of what is happening; he won’t just lay there as he did when he was a tiny baby, he’ll expect his Daddy to protect him. How on earth do I deal with that, how do I explain to him what is going to happen in theatre, how do I explain what all the tubes and wires mean post surgery, how do I comfort him as the effects of coming off the morphine kick in? I wish I could take all of Seb’s pain myself and allow him to get on with being a normal child, but unfortunately reality doesn’t work like that. So instead, I have to live in the knowledge that this next appointment may be the time I have to step up and deal with all of these things and if I am completely honest it scares the shit out of me!

There is an element within me that feels tremendously guilty as I write this blog. If you have a healthy child then you will probably think that is quite a strange thing to say; but since we were thrown into the world of having a sick child and more specifically a child with a CHD, everything changes. You meet so many children who deal with conditions far more complex and serious than Seb’s; children who have undergone many complex open heart surgeries, require constant medication and some whose only option will be to have a heart transplant.

Take a moment to consider this reality. The only way your child can live, is for another to die; it’s not easy is it; but it’s real life and it happens? To look at organ donation more broadly, there will be people waiting for heart, lung, kidney, liver transplants right now. In fact in the UK only 31% of us are registered on the Organ Donor Register…are you? Currently more than 10,000 people in the UK need an organ transplant; of these, 1,000 each year will die. That’s 3 people a day dying because not enough people have taken the time to think about the issue and spend 3 minutes completing the online form. I have another question for you – would you accept an organ for yourself or for your child? If your child had a heart defect and the only option was to receive a donor’s heart; or what if your child had Cystic Fibrosis and their lungs had deteriorated so much that they needed a lung transplant…what would you do? I make no apologies for being so direct on this issue because it is serious and if I am honest, I am stunned that such a caring, intelligent and giving Country such as the UK has such a low figure as 31% registered for organ donation. So do me a favour and click on this link now and register:

https://www.organdonation.nhs.uk/ukt/how_to_become_a_donor/registration/consent.asp

To return briefly to Seb’s outpatient appointment on Tuesday; it is unlikely you will hear us celebrating if Dr Kirk informs us he doesn’t need his operation just yet, because the reality is he still needs it at some point in the not too distant future. It just means we can return to our ‘normal’ life and watch as the dark cloud shifts out of sight until its inevitable return in a few months time.

You can follow us on Twitter: https://twitter.com/#!/Seb4chuf

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Comments on: "The Dark Cloud of having a sick Child…6 months on" (3)

  1. Nicola Clark said:

    After reading your post, I just wanted to say I can sympathise with the dreaded feeling when clinic appointments are looming!
    I recently lost my little boy Euan in April! He was also in the freeman under dr kirk. After being born with hlhs Euan had numerous open heart surgeries and did really well for a period of time bur unfortunately he went into end stage heart failure and was on the urgent transplant list and berlin heart and ecmo… But unfortunately a heart never came and he died in April at 18 months old! Thankyou for taking time to write a part in your post for raising awareness on organ donation!
    I wish you all the luck for Seb’s appointment and hope that now is not the time for next surgery! Like you said… When the time comes you will step up and you will get through it, but that doesent make it any easier!
    Nicola (Euans mummy) x

    • Hi Nicola,
      I can’t begin to imagine what you have been through over the last 8 months and I am sure time feels like it has stood still since that terrible day in April.
      I often feel like a fraud, because Seb’s condition is not as serious as little children like Euan and we have had a relatively smooth journey. But as I know you will understand, your child is your 100% and sometimes you just get so scared.
      Alongside our fundraising for CHUF, I feel passionately about organ donation and want to somehow increase the number of people on the Register. I just wish so much that I could do something to help those children who are poorly right now, because it is heartbreaking to hear stories like Euan.
      Thank you so much for taking the time to message me and I pray for you over this very difficult time at Christmas.
      Ivan x

  2. Nicola Clark said:

    Hi Ivan, thank you for your message, yes of course I understand! I too am very keen to raise awareness on organ donation! I have done a few articles for local papers and my husband has put his spare time into some fundraising also for chuf. I will be thinking about you, your wife and Seb tomorrow, I have everything crossed that his clinic appointment goes well and that now his not the time!
    Good luck!
    Nicola x

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