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05 October 2017

Skye's story

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Although a lively, healthy toddler now, Gemma's daughter Skye needed a number of transfusions after she was born. In 2017 Gemma came to Inverness Donor Awards Ceremony to tell her family's story.

I consider myself an ordinary person. I am a teacher at a local primary school, and I live not far from here with my husband Craig and my daughter Skye, who is just over two. I enjoy going for walks, having a coffee in my back garden and reading a book on my sofa - perhaps not too dissimilar from yourself.

You may think that you, like me, are an ordinary person. A person who works 9-5, shops in Aldi on a Saturday morning and drinks a glass or two of red wine on a Saturday night while watching Game of Thrones. But to me, you are extraordinary.  You are the reason I am standing here today, and the reason I am part of a family of three, not one of two parents mourning the death of their first child.

You saved my child's life nine times.

In the first three months of her life, Skye had two red blood transfusions and, I think, seven platelet transfusions. I say "I think" because there was so many I may have lost count. Most people would regard the day of their child's birth as an extraordinary experience. On the 20th April 2015, the day Skye was born, I did indeed experience something extraordinary but it wasn't just her, it was you.  You were there that day, you held my child's life in your hands, and you gave her back to me.

Skye as a newborn
Skye as a newborn

To give you some background, that day, 39 weeks into an ordinary pregnancy, I gave birth to Skye via a planned c-section, simply because I have an extra bone in my pelvis. Theoretically, I should have given birth to a perfectly healthy baby girl. But instead I gave birth to a "very very sick wee girl" as one of the doctors put it. Later on another said to me, if I had given birth just three hours later, Skye would have been stillborn.

I could talk to you about her heart, her lungs, her brain, her liver, her kidneys, her bone marrow, which, at that time, was 'suppressed to the point of failure'. But here are the facts, in blood terms. When Skye was born her haemoglobin (which carries oxygen around the body) was 61. 120 and above, is considered normal. Her platelets, which prevent internal bleeding, were 7. 150 and above is considered "normal".

That day alone, you saved my child's life twice. The next day was far from ordinary. My child was on a ventilator in a drug-induced coma, in a plane on her way to Yorkhill, Glasgow. ECMO, the child version of an adult life support machine, was in the pipeline. I sat in the back of a car on the A9, 36 hours post c-section, wondering whether my child was dead or alive. At this point, I cannot talk to you in facts in terms of blood, because it was the last thing on my mind, I didn't realise how important it would become.

Seven dark days and a platelet transfusion later, Skye was "better" and we flew back to Raigmore, Inverness on a NHS plane with a capacity of six -just me, Skye, the pilots and two neo-natal nurses. From then on, I can only remember facts in terms of blood and feelings in terms of transfusions.

Skye was ten days old when, at the same hospital, my best friend Laura gave birth to her child Elle, who is now Skye's best friend. Despite being only roughly 20 metres apart, it took me a day to congratulate her. That day, Skye's platelets dropped to 18 - below 20 there is a high risk of death.

Because Skye had been so poorly, the only place the doctor could find a suitable vein for a transfusion was in her head. I remember fleeing from the special care baby unit because I could not stand the sound of my child screaming as I waited down the corridor. In the hospital, our family life settled into a little routine, revolving around blood.

 

Skye today
Skye today

Every day started with Skye giving a blood sample. 'Giving' makes it sound easy. It isn't. For a newborn, it involves a heel prick and squeezing out blood drop by drop until just under a millilitre has been collected. I lost count of how many times the blood in the tube was clotted and therefore unusable and the process had to be repeated.

Just after lunchtime, like clockwork, we were told that Skye's platelets had dropped. Every single day, they dropped and dropped until a platelet transfusion was inevitable. Then they dropped and dropped again. It's just a transfusion, friends and relatives used to say. I used to believe that too, pre-Skye, until I saw it for myself. But I know now, it's never just a transfusion. First, there is the trauma of getting a cannula in, the needle in which the blood is delivered. Skye screamed for an hour more than once, with me as a witness pinning her down, begging the doctor to go on.

 

Thanks to you, I get to watch my child grow up. You gave me this extraordinary, ordinary life. Gemma Edwards

Then there is the transfusion itself. For a baby, depending on weight, a platelet transfusion takes an hour. A red blood cell transfusion takes four hours. One good day, Skye slept through a platelet transfusion and I sat on a chair beside her, texting well wishers on my mobile phone. You were there that day, in a packet just above my head.

Another day, I held Skye in my arms for hours and hours, watching her pale face become rosy again as the blood flowed into her. Every minute of those hours felt like days as she kicked and wriggled as newborns do, every minute that cannula was on the verge of falling out. But you were there, you were the reason I made it through that experience.

Another time, Skye was admitted to the children's ward to receive a platelet transfusion as a day case. We were home by 8pm that day. Low platelets causes blood vessels to bleed out. That day, Skye became so distressed that visibly, the blood vessels in her head turned red. In a comfy and cosy side room I was convinced my child was at death’s door. I felt like breaking into the blood bank and administering the platelets myself. Then, you came. Skye smiled and laughed the whole time you were there. 

That was the last time we were all in a room together, until today. From that day, Skye's platelets rose and rose. Today, Skye is an ordinary girl, she leads the most perfectly ordinary life, because of you. The last time Skye gave blood, ironically the last day of my maternity leave, she had 329 precious platelets. To this day, medical science cannot explain the reasons behind what happened to Skye just before birth. Every test, every expert, Inverness, Glasgow, Edinburgh, Dundee, Aberdeen, Bristol, London. No one can tell me why we needed you. Why her life, my life depended on you.

The fact is, you are dependable, month after month, whenever you are needed, you agree to sit there as your blood is collected in a bag above your head. You willingly consent to someone finding that vein, getting that fricking cannula in. To you, it's not a difference between life or death. It's the biscuits on offer, it's your good deed for the day.

Today is the 14th of September 2017. If I let myself, today, I would hug you to the point my legs would give way as I'd cry in your arms thanking you for what you did for me. I have you to thank for my child's first steps, my child's first words, my child's first day at school. Thanks to you, I get to watch my child grow up. So if you ever can't be bothered to give up your time, get that cannula in your arm, watch the clock tick as that pint of blood goes into that bag, please - think of me, think of my family, that you created, that you made possible.

You gave me this extraordinary, ordinary life. Thank you is only the start of what I want to say to you.

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