The greatest act of selfless love

I have been trying to get my head around the Charlie Gard case.  I have been trying not to criticise, because I haven’t been through what Connie Yates and Chris Gard have been through.  I don’t know, I can’t know, how I would feel, and as a result how I would react, were I in Connie Yates and Chris Gard’s shoes.

For anyone who has been living under a stone without any contact with the international news or social media for the last month, Charlie Gard was baby boy from London, who was born with mitochondrial DNA depletion syndrome, a rare genetic disorder that causes progressive brain damage and muscle failure.  This meant that he could not see, hear, move, cry, swallow or breathe unaided.  He also had severe epilepsy, had suffered catastrophic brain damage and had been kept alive with a ventilator, regular suctioning of his lungs, feeding by tube and various other invasive treatments.

Medical experts from Great Ormond Street Hospital (GOSH) opined that continued life support was futile because there was no chance of his condition improving. Charlie Gard was in pain, and GOSH argued “Charlie’s has been an existence devoid of all benefit and pleasure”.  Charlie Gard’s parents disagreed. The relationship between medical staff and the Gards broke down and the case was taken to Court. 

President Trump and the Pope intervened offering their support on Twitter…

A neurologist in the US offered to carry out experimental treatment.  The Court ruled that travel to the US would be painful and the treatment unlikely to be successful.  The Gards then argued that Charlie should be able to die at home.  There were practical difficulties like the fact that the ventilation and medical equipment wouldn’t even fit through their front door.  Moving Charlie would also be risky and painful for the baby. The Court agreed to Charlie dying in a hospice.  He died on 28 July. 

greatest act of selfless love

I sympathise with the Gards. 

I know that I couldn’t live without my son.  He is the sun around which I orbit.  Without him, I would be in free fall.  Without my son, I cannot imagine living.   

Motherhood brings indescribable love and emotion tied with a cord that can never be severed.  The love of a mother is irrational and illogical and hormonal and biological.  It is intense and raw and unquantifiable and unqualified. 

It is for this reason that I cannot criticise the Gards.

I do, however, applaud those parents who are brave enough to turn off life support when life cannot continue unaided. 

I applaud those parents who recognise when their child’s life is a curse rather than a blessing and have the courage to end it. 

I applaud those parents who have the confidence to place their trust in the professionals who are able to make judgements based on fact and reason and evidence, rather than raw emotion. 

I applaud those parents who are able to see that a body kept alive by modern technology isn’t actually living. 

I applaud the parents who are able to carry out what I believe is the greatest act of selfless love. 

I know that I would want to do the right thing by my son, but I cannot criticise the Gards, because grief stricken and struck down, I don’t know that I could carry out the greatest act of selfless love either. 

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  1. August 4, 2017 / 2:25 pm

    This was such a horrible situation all the way around. I agree that I don’t have the answers either and totally sympathize as well. Heartbreaking. Thank you for not being judgmental.

    • thesingleswan
      August 4, 2017 / 7:23 pm

      Thank you for your comment Carrie. Pen x

  2. August 5, 2017 / 1:33 pm

    I agree, I had no way of knowing what to think about in this case – the right thing is of course minimal suffering to our children, but like you I couldn’t fathom a world without them in it.
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    • thesingleswan
      August 5, 2017 / 9:14 pm

      Thanks Alice. Pen x

  3. August 5, 2017 / 3:03 pm

    such a terrible situation. My heart goes out to them. I think that I would have this courage, but I guess this is one of those things that you really can’t say without being there #brilliantblogposts
    jeremy@thirstydaddy recently posted…So We DanceMy Profile

    • thesingleswan
      August 5, 2017 / 9:13 pm

      I agree Jeremy, but it is tough, really tough. Pen x

  4. August 5, 2017 / 9:55 pm

    I don’t know what I think about all this (I have been living under a rock, apparently). What a difficult situation. Life is full of greys, isn’t it? #KALCOLS (I often think of people with doner organs that meet the parents of the doner – it must be such a hard thing for the parents to get their head around)

    • thesingleswan
      August 6, 2017 / 9:30 pm

      Yes, that must be really strange and tough. Pen x

  5. August 6, 2017 / 12:34 pm

    It was such a sad case, I think it was a bit awful that people who didn’t really have the medical knowledge were getting involved like Trump etc. It was such a horrible situation for the parents to be in and it would be difficult to give up all hope when people are offering to help. I feel blessed that my children are healthy.

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    • thesingleswan
      August 6, 2017 / 9:27 pm

      Me too Jenny. I am so lucky that Cygnet is healthy. I hope he stays that way. Pen x

  6. August 6, 2017 / 8:10 pm

    I agree it’s a terrible situation and couldn’t possibly recommend anything great read Thank you for linking to #ThatFridayLinky Please come back next week for
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    • thesingleswan
      August 6, 2017 / 9:26 pm

      Thanks for your comment Nige.

  7. August 6, 2017 / 9:31 pm

    I totally agree with you. I can never imagine what those parents have gone through #KCACOLS

    • thesingleswan
      August 7, 2017 / 10:17 pm

      Thanks Laura

  8. August 6, 2017 / 9:37 pm

    I couldn’t agree more with you on this… I must admit I have struggled to watch this play out in the media because as an outsider it’ much easier to see it clearly from both points isn’t it? I cannot even begin to imagine how the Yates/Gards are feeling right now… #RVHT

    • thesingleswan
      August 7, 2017 / 10:17 pm

      I agree, thanks for your comment Aleena. Pen x

  9. August 8, 2017 / 5:57 am

    It is such a sad case, and when reading it, I thought back to J when he was born and what would I have done if the NICU doctors told me there wasn’t anything more they could do for him. It is something they breifly cover in talks with you. I honestly don’t know what I would have done in that case. You want and love your baby but also at what point do you give up the fight. Fortunately for me he never got to that point and he is here today. Sympathies to his parents, they were doing the best they could for their little boy.
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    • thesingleswan
      August 8, 2017 / 10:13 pm

      Thanks for your comment. Pen x

    • thesingleswan
      August 8, 2017 / 10:12 pm

      Yes, I cannot agree more. I have to say that whenever either Trump or the Pope tweet about anything I feel inclined to take the opposite position just by default. pen x

  10. August 8, 2017 / 8:35 pm

    Such a sad situation. As parents we would want to do everything possible and I think Charlie’s parents did that and then accepted the inevitable. I can’t imagine the pain they have gone through and I hope Charlie is in a better place knowing how loved he is. #RVHT
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    • thesingleswan
      August 8, 2017 / 10:09 pm

      I agree. thanks for your comment. Pen x

  11. August 11, 2017 / 10:25 pm

    I sympathise with them but I couldn’t say for sure what I would do. I think they should’ve turned off the life support months ago but that’s not my call. Not my kid. #kcacols

    • thesingleswan
      August 12, 2017 / 7:59 pm

      I hate to say it, but I absolutely agree with you. It would have been the right thing for Charlie. I don’t know that, in their shoes, I would have been able to do it though. Pen x

  12. August 13, 2017 / 4:35 am

    It’s heartbreaking , I couldn’t imagine being in their shoes. Loosing a baby is never easy. My heart goes out to the parents that went through this or something similar #KCACOLS

    • thesingleswan
      August 13, 2017 / 7:49 pm

      Thanks for your comment. Pen x

    • thesingleswan
      August 13, 2017 / 7:48 pm

      Thanks for your comment Jenny. Pen x

  13. August 14, 2017 / 6:00 pm

    Such an awful situation, it makes me cry just thinking about it. I honestly don’t know what I would do in that situation, and I thank my lucky stars that my babies were born healthy. Thank you so much for linking up at #KCACOLS. Hope you all come back again next time.

    • thesingleswan
      August 14, 2017 / 8:31 pm

      Thanks for your comment Kerry. Pen x

  14. August 15, 2017 / 7:52 pm

    I cannot even imagine how I would cope in this situation and what decision I’d make. I think I’d want an expert to make a decision for me but it’s impossible to know without being in that position. I have friends who had to make decisions about continuing pregnancies when they knew the baby would have little chance of survival. One continued with the pregnant and the other didn’t. I feel so fortunate that my little girl was born healthy and I didn’t have to make any difficult decisions. It almost puts me off having another.


    • thesingleswan
      August 16, 2017 / 6:35 pm

      I agree Becky. I thank my lucky stars that I have a happy and healthy child. I am very privileged. Life is not fair sometimes. Pen x

  15. August 19, 2017 / 8:13 pm

    An awful situation for the parents, the courts, the doctors and everyone involved. I wouldn’t want to ever be in that situation #kcacols

    • thesingleswan
      August 19, 2017 / 8:40 pm

      I know. Terrible. Thanks for your comment. Pen x

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