How could we ever have let her die in an “unplanned” kind of a way

How could we ever have let her die in an “unplanned” kind of a way

Today I was in town and found myself with a bit of unexpected spare time, so on a sudden impulse I headed into the Health Center and climbed the two sets of stairs to my work place – somewhere that I hadn’t visited since July ’13 before going to Bristol for Leah’s bone marrow transplant.

There wasn’t many in the office but it was absolutely lovely to see and chat to some of my work colleagues. It reminded me of a world beyond my grief.

Something else very nice happened while I was in at work – I unexpectedly got to see and hug Dr H, the specialist in paediatric palliative care who enabled Leah’s transfer from ICU to the N.I. Children’s Hospice.

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On Monday 13th January 2014 I finally accepted that Leah was not getting the miracle of healing that so very many of us were hoping and praying for.

I asked the staff in Belfast City Hospital what our options were for Leah’s end of life care – apparently we didn’t have any options, she would die in ICU.

I said that I didn’t want her dying in a critical care environment and that I wanted to take her home or to the N.I. Children’s Hospice but I was told that neither was possible.

I was distraught on two counts – one because my child was dying and two because I felt that I was being denied the option of planning a peaceful and dignified death for my child, surrounded by those who loved her.

As a student nurse in the early ’80s I formed quite strong views in favour of hospice care. I also at that time read TO LIVE UNTIL WE SAY GOOD BYE by Elizabeth Kubler Ross. The writings of Elizabeth Kubler Ross introduced me to the concept of ‘end of life care’ and confirmed my thinking that end of life care should, wherever possible, be planned and dignified, both for the benefit of the person dying and also for those who will be left to grieve.

On Tuesday 14th January, through my own personal work contacts I was put in touch with Dr H. She immediately offered to drive the 140 mile round trip to BCH to convince the staff there that we as a family did have options, that it was indeed possible and safe for Leah to be transferred to the N.I. Children’s Hospice when the time was right.

Dr H knew how this could be arranged and she had all the names and phone numbers of those who needed to be contacted so that it could be arranged.

Once Dr H had outlined to the staff at BCH what was possible, all the pieces of the jigsaw started falling into place. From that moment on, the staff in BCH did everything they could to support our choice and to make it happen.

The particular doctor from the Royal who normally did  transfers to the hospice was not available on Thursday 16th January when we needed him, but the lovely ICU doctor from Cork volunteered to give up his morning off to come with us.

One of our favourite nurses said she would come too. By Thursday morning Leah was too ill to survive being changed over to the portable ventilator, so the Cork Dr calmly said that we would just bring the big ICU ventilator with us – it was apparently unheard of for a patient to leave ICU on anything other than a portable ventilator.

When the emergency ambulance arrived to take us to the Hospice they could see straight away that Leah and all of her medical equipment wouldn’t fit in their ambulance – without any fuss they ordered a bigger patient transport ambulance to come.

Leah, the medical staff and myself all traveled in the transport ambulance while the emergency ambulance blue-lighted us across Belfast.

Normally during the day in her room in ICU Leah’s Spotify playlist played continuously on her iPad. At night I asked the nurses to keep the music off to help Leah differentiate between day and night, as that distinction isn’t obvious in an ICU environment.

On her last night in ICU Leah was being looked after by a lovely nurse who belonged to a church in Ballymena. I asked her to play Leah’s Christian music during the night because this was to be her last night on earth. I was in and out during the night but I did manage to sleep a couple of hours in my room in the Cancer Centre.

When I returned in the early morning the nurse told me that she had picked out the best songs for Leah to listen to and then added “I sang to her too” – my heart just melted when she told me this.

Then I turned over Leah’s own desk calendar onto that days date and read the verse for that day which was 1 Corinthians 14:40Let all things be done decently and in order“. Leah was very much a “planner” – she loved to be organised and wrote lists for everything – how could we ever have let her die in an “unplanned” kind of a way?

Through my tears I uttered a quiet “thank you Lord, I truly know that Your hand is upon us this day“.

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When we arrived at the hospice there was approximately 35 family and very close friends of all ages waiting to welcome us.

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The medical staff settled Leah into her very pretty room with her name on the door. Then friends and family had time to say goodbye. The Hospice staff introduced themselves to us, then remained discretely in the background, always ready when we needed them.

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It was like a big family get together albeit a very sad one. Leah absolutely loved big family get togethers.

Children who didn’t want to be in Leah’s room all the time, had access to a games room, hospice staff had an oversight to all that was going on.

After Leah had died in a peaceful and dignified manner, the hospice staff provided lunch for everyone – there was no need for anyone to rush away – everyone was able to deal with the situation at their own pace and the hospice staff were always on hand to provide support when needed.

We had prayed for a miracle of healing – we didn’t get that miracle – but the beautiful way in which Leah was able to die, was in itself a miracle and for that – through tears of grief and sadness – I am very thankful.

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10 thoughts on “How could we ever have let her die in an “unplanned” kind of a way

  1. Hi there,
    I am sorry to hear about Leah. I am going through similar situation.
    I live in Melbourne Australia. I lost my husband last July and still trying to understand the cause. The Genetics doctor gave me a call today and told that GATA 2 mutation has been found in my husband’s blood sample. My husband was diagnosed for MDS. An unrelated cord blood cell donor was found but we didnot even get the chance of treatment.

    The medical reason of my husband’s death is recorded as multiple organ failure due to e-coli bacterial infection. None of the anti-biotic responded and he was declared dead within 24 hours of his admission in ICU.

    Not sure what was Leah age, my husband was 30 and he lost his siblings due to unidentified reasons and all the doctors suspect that the GATA2 mutation is running in the family. Don’t know what I have in store in future.

    I just want to say “THANK YOU VERY MUCH” for writing the blog. It is devastating experience and to be honest, I am not even a position to recall what happened. It haunts me !

    We can be in touch through Shailly.sinha@gmail.com, if you like.

    Love,
    Shailly

    Like

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