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This memorial website was created in the memory of our precious loved one, Leon McDermid who was born in Australia on March 14, 2006 and passed away on March 15, 2006 . We will remember him forever.
He was diagnosed in utero at 19 weeks with Congenital Diaphragmatic Hernia - around 60% of these babies survive. Leon didn't. His lungs had been affected by his stomach and bowel coming through a hole in the left side of his diaphragm - they pushed his heart to the right but the really fatal thing was they blocked up all the space his little lungs needed to develop. Some babies manage to develop what lung they can grow and so they can survive. Leon had very little functioning lung.
I have written more in "His Legacy".
There is so much more to say but Steve and I held him in our arms about 5pm on the 15th of March 2006 - and he died at 5.05pm. Such a short time of such bittersweet joy. Leon, it was indescribable how much it meant to us to be able to hold you in our arms as you tried to breath and couldn't. It sounds like a parent's nightmare, but by that time we had sort of realised that you were going to die and so we wanted to it to happen while you were in mummy and daddy's arms...
It hurts. but have engraved on my heart the beauty of that moment.
Mummy loves you Leon and so does daddy.
A poem written my Mummy about two and a half months later:
Walk with Love in this lonely place
Find the strength to voice my sorrow
Shout how much I miss my baby's face
Keep him safe until I see him Tomorrow.
Baby we miss you. We really have to do the hard work of grief. It hurts to do it but it would kill us not to. We cry but we know that you will always be with us in our hearts. It just hurts not to have you to look after every day. It hurts to know that you would have been such a joyful independent little person - a fun cousin, a fun nephew, a georgeous grand son, a precious son. Even if we had one more day with you - even if I had been able to spend your first and last evening with you - even if you had not been sedated for most of your short sweet life, we would still be wishing for more time with you when you died...
Love is so hard when you have nothing to put your arm around, no face to kiss, no demanding cries to get annoyed at. It's still Love. It's still there, but there's no Leon here in my arms. There's no Leon in the NICU. There's only a space where you should be Leon.
We love our baby Leon.
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Leon's Mum's story about him 15 June 2006
will never forget the day he was diagnosed with Congenital Diaphragmatic Hernia, a malformation of the diaphragm which occurs randomly (or they don't know yet) in about 1 in 4000 babies. Of those babies, the survival statistics vary but generally they say 50-60% will live. Other hospitals record higher statistics. We didn't care about the percentages. We just wanted him to be on the living side of those statistics. We tried very hard for him to have a loving 'gestation' period.
I have to say that at 39 weeks pregnant, although nothing could give us certainty that things would go alright, I was fairly confident because everything else was going so well. The only thing they couldn't tell us about were his lungs - they knew he would probably have smaller lungs than usual but the extent of their development was really what counted
When the time came to give birth to him, I said to myself that I can cope with whatever happens (even though I was probably kidding myself!) - because the idea of giving birth was hard enough for me ( a first time mother ) - let alone thinking about how hard Leon's struggle to live might prove to be. I knew that what I could give him was as peaceful a birth as I could. I was induced which to me meant that Leon would be born very tense. I was upset that he would have to be induced but tried to understand. The one good thing about it was that his grandparents on Steve's side could plan to take time off to come down to Brisbane to be there. For that I really am grateful. My sisters and my partner Steve and my Mum were all my nominated support people - it's rather a lot - but I envisaged a 'roster' type situation where there would be two in the room with me at any one time but all would not be there for all of it. However, the intense nature of an induced labour meant that all of that planning went out the window with all concerned for how I was going and no real rest periods... I thought I would be begging for an epidural but with breathing techniques and gas... and my sisters ingenious back 'pushes', I got through... Leon was born and they say that he had been a very happy baby all through the birth - his heart beat did what it was supposed to do etc... I could not but wonder whether the stress of an induced labour, although good for his lungs may have left him tired for the fight he would have for his life after that. I don't know, but I do wonder...
So far I have written about us. I don't think it is fair. I need to write about Him. He was so cute and so brave for the 22 hours that he lived...
Leon was born at 7.16pm on Tuesday 14th of March. His Apgar score was 4 and then 6 10 minutes later because they had already intubated him.
I did not really get to have a good look because I had told the specialists to whisk him away if it was necessary because I wanted them not to waste even one second on getting Leon into a healthy state.
I still do have that image engraved on my memory though. I wish we had a camera. Anyhow, I looked around and saw my son on the bed below and he didn't cry - but apparently he had a little wriggle (like he had done so much in my womb) and a little look around before he was intubated. I did not see his eyes open, but the doctor did. I feel very glad that they told me about it.
I think the happiest and then the saddest time in my life started there. I was so exhausted. I really could not move without shivering and I really could not walk - my legs were so swollen, I had had a bit of a back birth and had used my legs a lot. All I wanted to do was to be with my baby but was too tired to go past his little room while they were working on him. I wish I had insisted now. I'm sure I would have found the strength. But if I remember how exhausted I was I try to forgive myself. I consolled myself with thinking that Steve was there with him as were Steve's parents and my mother, and his aunties.
Later on that night a paediatrician came to speak to me about Leon. He told me that Leon was critical but stable - those magic words. I asked him if I should come and see him that night - wondering if asking this would tell me if I needed to go right then and there or not .His words were cautious - he said if I felt like I could, then I could. I only had to ask the nurse, but if I was too exhausted, then I could rest. I wish I had gone now that I know. I know I could not even sit up without feeling dreadful but I really wanted to go. I couldn't sleep anyway... I drifted in and out and sat staring at the clock for a lot of the time, waiting for morning.
I had a surprise because Leon's dad was allowed to stay with me that night at the hospital. He came in to sleep about 11.30pm, on a mattress on the floor. He also gave me the photos they had taken of our georgeous baby. Leon had tubes all in his mouth and nose but he was the biggest most georgeous baby I had ever seen. His little face was so cute - it reminded me of a baby lion - something about the combination of button nose and the way his forehead was structured - so perfect. I was surprised because I thought Steve would stay all night with Leon but I didn't give it much thought - it was something to do with the fact that he had had more complications I think. Steve had a phone number and they were going to call if there was any changes in Leon's condition. So I was glad to have some time with Steve as well. To celebrate the birth of our son together. We were so proud and so confident that he would come through it alright.
I think already by that time, Leon had had 'pneumothorax' - air on the lung. It is not so serious, but with a baby with underdeveloped lungs I think it is pretty life threatening but hope was still not lost.
The following morning I sent Steve down before breakfast to see if we could go and see him. He came back after making some phone calls downstairs and told me that they wanted me to wait till after the staff change over. He also told me in his optimistic way that things had gotten worse overnight and they would tell us more once the staff had changed over.
To cut a long story short, we went down to the next floor the NICU level... We went into his little room which he had all to himself and had to put a gown on and scrub up. I was still in a wheelchair, not being too confident on my feet.
This was when my hopes started to crash down around my feet - one of the nurses just said to another nurse in my hearing something like "Did you hear what happened?" - So,at least when I had washed my hands I had had a little bit of time to prepare myself for what they were going to say - of course, I said to myself Leon will pull through anything.
When they told me that they did not expect Leon to make it through the day, it took me some time to really understand.
I could not believe it.
I literally had to keep beleiving in order to meet my son and talk to him and hold his little hand and arm.
However, they kept on at me, and finally I had to understand. I had to call my mother at the school she works at to ask her to come in. I told her also that we were going to baptise little Leon and that we couldn't really wait for everyone to turn up - that it would be better to do it straight away... My mum really scared me because she fainted at the school and they would not let her drive - luckily my brother was on his way from the gold coast and picked her up from the school and took her to the hospital. I couldn't get in touch with all my sisters but at least I told one of them who was far away on a care job outing so that she could be aware that she would have to come quickly to see him. My other sisters I managed to message them later... they were at work so they had their phones off. At least Steve's parents were already there as was one of his sisters, his ex-brother in law and his brother came that day. I tried to call my Dad but was unsuccessful.
I tried to sing. I tried to talk to little Leon as much as I could. Most of the time I was crying next to him, wishing I knew all the things I should say - all the things that I wanted a lifetime to be able to say them. They were there in the touch of our hands and our voices I think.
It took a while for me to understand that Leon was dying. His SAT scores (oxygen saturation) were below the normal by a long long way - something like 60%. So, I think that his organs would have probably already started to shut down. He was on 100% medication.
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Click here to see Leon McDermid's Family Tree |
 Tributes and Condolences |
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Two years on, but loved forever. / DAVID Williams (Great Uncle )
I was so so sorry and saddened to hear about little Leon's departure, though I believe that he is in a place where he will be loved and happy for all eternity. |
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On your Birthday Leon / Blakley Debbie (Friend of Mummy )
Thinking of you today little Leon on your second birthday. I will be lighting a candle for you here in the uk tonight.
Fiona, I am thinking of you today
lots of love Debbiexxxxxx
mum to Joel LCDH 24.04.06 - 25.04.06
www.joelarchie.piczo.com...
 Continue >>
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One grieivng CDH mom to another / Dawn Torrence
Leon's site is such a beautiful tribute to him. You really did an incredible job and I love cherubs on the page too.
If you need to talk, please feel free to e-mail me. Also know that CHERUBS members are here for you as well.Continue >>
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Lil Leon / Caleb And Karina Hotz (Friend of Steve )
It's the first time that we've seen lil Leon and your beautiful!! But then I guess you already knew that!! Congratulations on the birth of your baby boy-although belated we've thought of you since your birth. Leon Patrick McDermid y...
Continue >>
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Karina and Caleb Hotz / Caleb And Karina Hotz (Friend of Steve )
It's the first time that we've seen lil Leon and your beautiful!! But then I guess you already knew that!! Congratulations on the birth of your baby boy-although belated we've thought of you since your birth. Leon Patrick McDermid y...
Continue >>
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Birthday wishes / Theresa Gill (CDH mom ) Read >> |
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To Leon / Tash Read >> |
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What a precious baby! / Maria Reardon (Fellow CDH mom, member of BOH Care Group ) Read >> |
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Always In Our Hearts / Lauren Ziebart (Friend of Mommy ) Read >> |
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Angel Face / Theresa (Angel Friend's mommy ) Read >> |
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Story: Leon's visit to the Zoo / Fiona Rice (Mum) Read >> |
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Letter to Leon / Theresa Gill (angel friend's mum ) Read >> |
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Joels mummy / Debbie Blakley Read >> |
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What a beautiful face / Theresa Gill (mommy to an angel friend ) Read >> |
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Letter from Heaven / Auntie Steph Pratt (Auntie) Read >> |
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| His legacy |
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Song from Leon's Service 17 March 2006
Be Not Afraid
You shall cross the barren desert
but you shall not die of thirst
You shall wander far in safety
though you do not know the way
You shall speak your words in foreign lands
and all shall understand
You shall see the face of God
and live
Be not afraid
I go before you always
Come follow me
And I will give you rest.
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I do not ask
I do not ask, O Lord, that life may be a pleasant road;
I do not ask that Thou wouldst take from me
Aught of it's Load,
I do not ask that flowers should always spring beneath my feet;
I know too well the poison and the sting of things too sweet.
For one thing only, Lord, dear Lord, I plead,
Lead me alright -
Though strength should falter, and though heart should bleed,
Through Peace to Light
I do not ask, O Lord, that Thou shouldst shed full radiance here,
Give but a ray of peace, that I may tread without a fear.
I do not ask my cross to understand
My way to see -
Better in darkness just to feel thy hand
And follow thee.
Joy is like a restless day, but peace divine
Like quiet night;
Lead me, O Lord - till perfect Day shall shine,
Through Peace to Light. |
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I have made a truce with Time
Ann Batchelder
I have made a truce with Time
The hours stand still
That once so quickly fled on winged feet,
Moments too fluid cannot now fulfill
their destined passage where the planets meet
Infinity.
For all is infinite waste,
Vastness and stillness and a withering
of flowered things, no loitering and no haste
No blight of winter and no tryst with spring
For I have sworn a truce and planted high
the signal of distress Time cannot pass,
Anymore than stars can leave their native sky
Or earth prevent the quiet, pushing grass;
Over my life Time has no more command.
O Lord, reach out your strong sustaining hand!
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A vision
A vision - you and me, walking with our son Leon in the park.
It's 5 years on.
He must be 5 by now.
He must be starting pre-school by now.
What would he have been interested in?
What things would have captured his imagination?
A vision (nightmare?).
Saying good bye to you
on your first day of life.
We would have prefered the first vision.
Love Mum and Dad
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Service Mum's Words 17 March 2006
A baby
Product of love between two people
Carried with love and joy and care
Expectation and dreaming
Love to the baby
Joy at being a mother
Love to the baby
Joy at being a mother
Tell Leon I love him
Mummy loves you
Daddy loves you
precious one
To touch your head
To touch your arms
Skin so smooth
to see your face finally after 9 months
of anticipation
to see how finely formed and tuned
your body
your ears
your nose
your hair so dark
PAIN that the only things I could do for you were talk, touch, sing, pray and help to take your temperature.
PAIN
Love
Words can't express
my little tyke,
how much going through each
day without you is going to hurt
We'll always be your parents
You will always be in our heart
Love Mummy |
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| Leon's Photo Album |
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| Fi holding Leon for the first time |
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