THE BLOG
04/09/2018 15:57 BST | Updated 04/09/2018 15:59 BST

My Baby Daughter Is Living Proof Of Why We Must Talk More Openly About Organ Donation

Three people a day die waiting for a suitable organ to become available in the UK. And why? Because not enough people tell their families they want to donate.

Isobel Hohler

Mondays are always uneasy days for me and they always begin the same way.

I fall out of bed and pour black coffee down myself while hauling my daughter out of her cot, as we await our community nurse.

Our nurse always knocks before 9am. She pulls blood out of a tube hanging from my daughter’s side and it is sent off to various labs to be analysed.

My heart always lurches when I see the email titled ‘blood results’ later in the day.

What will we find this week? Moderate magnesium? Awful albumin? Hopeless haemoglobin? An acute rejection of the liver?

I’ve learnt, as the mother of a baby whose liver failed, to read these blood results with a degree of insight.

I know when to panic, and equally I know when to release the lungful of air I feel I’ve been holding since dawn.

Today, my daughter’s blood results were normal. 

I felt like a free diver bursting up to the surface, lungs burning, for their first breath.

I quickly pinged an email back to our nurse: “Imagine these results year ago, when my baby was dying. These results are all because of one person.”

Of course, it’s not just one person, but an endless team of people.

Ultimately, however, my 20-month-old daughter is alive because one woman chose to communicate her decision to donate her organs upon her death so that Luna could receive a transplant. 

We have all been told about organ donation. We have seen marketing for it. Many of us have signed the NHS register. Yet somehow, you never think it will happen to you. It will never touch your life. And then one day, it does happen. And you are confronted with the very real possibility of losing the ‘thing’ that is most important to you: in my case, my baby.

My daughter, named after the moon, and ironically born yellow, wrestled with a devastating liver disease for the first nine months or so of her life.

Her appetite was non-existent and she was fed through a tube going up her nose and into her tummy.

Her hands were covered permanently to stop her scratching as the bile salts from her liver failing built up under her skin, causing a torturous itching.

As for the milestones us first-time mothers are meant to celebrate and boast about? They didn’t exist.

I had a daughter who lay prone; who was clearly too sick to the stomach to eat of her own accord, and I didn’t hear her giggle or laugh until well after her first birthday.

She spent over a third of her first year in hospital, and during one stay, nearly died. She was smaller than a cuddle and only just bigger than a handful.

Eventually, we were told that if our daughter was to live to see her second birthday, she would need a liver transplant.

The statistics of children and adults who linger on the waiting list for an organ donor and die, were read to us, funereally.

It was a very real possibility that our baby would die waiting for an organ - in fact, around three people a day die waiting for a suitable organ to become available in the UK. And why?

Because not enough people tell their families they want to donate.

Because it won’t happen to us. Because we are too afraid to discuss what happens to us, our bodies and our organs, upon our death.

It’s strange: we walk through life doing good things and bad. We can stand in judgement of ourselves and of others. We search for meaning, for raison d’etre, for hope, for understanding, and we can wish to be better, to be kinder.

Yet committing, what is in my opinion, the ultimate kindness is within our grasp: signing the NHS Organ Donor Register, and by communicating to our families and loved ones our decision to save lives.

When I look at my daughter, now 20 months, with pink cheeks, and big attitude and a bravery and adventurous spirit that I can’t attribute to either myself or my partner, I reflect.

I reflect on the woman that gave Luna her second life.

I like to think those brave and fearless streaks that run so wide in her are down to that one wonderful human who really gave her life. Transplants mean the gift of life for a child, a daughter, a son, a mother, a father, a friend, entire families.

Organ donation needs to be spoken about bravely, and immediately by us all. ‘Tomorrow’ may simply be too late for you, but ‘today’ may mean the gift of life for another family.

The one thing I can confidently say is that the person who saved Luna’s life lives forever inside her.

Organ Donation Week runs from 3-9 September. Sign the register at www.organdonation.nhs.uk