How my brave little girl gave me the courage to find out if she can ever have children
TV star’s agonising dilemma over hospital date to see if her daughter has a womb
There is a letter sitting on the side in my kitchen that I am determined to avoid. I’d rather de-hair the shower plug, hoover the stairs, or sort out my tax return than face up to it. And I hate all those things almost as much as getting my moles checked or having a smear test.
The letter – which arrived in February – is from the paediatric department at the hospital. They want me to bring my eldest daughter, who is 11, in for a scan. To find out whether she has a womb. Honestly, I am not sure I want to know.
My perfect-looking daughter was born with all the things you pray for: 10 fingers, 10 toes, hands that curl around a finger and legs tucked up tight under her chin.
She was also born with a genetic abnormality, the ‘HNF1B gene deletion’, which affects kidneys, pancreas, liver and the reproductive system. It is also linked to autistic spectrum disorders.
For her, smiley faces don’t translate to happiness, and my occasional tears were just strange wet drips to be cleared up with a towel. But if her glass is less than half full emotionally, it is brimming with rational thinking: times tables – learned in a heartbeat; mathematics – a simple process; complying with rules – the only option.
Imarried the opposite to myself. Someone quiet, calm and unemotional. He is my balance. Curiously, it has become something he has in common with our lovely daughter; quietly processing information, never mad enough to throw a phone or slam a door.
She is the balance to our family – watchful over her baby brother, doing as she is told when my other daughter does the very opposite.
I have learned as a mum that diagnosis and labels are not always helpful, setting ourselves apart for no reason. So I’ve put the ‘high functioning autistic’ diagnosis away in a drawer too. Even without a label, she’s perfectly aware in her own quiet way that she’s not like other girls her age.
All the things they’re interested in, things like make-up, clothes and gossip, are nonsense to her. It’s a line of thinking I encourage.
Every six months she has her blood pressure tested and kidneys scanned for cysts. That’s another characteristic of her condition.
Hers are just small specks at present. I’ve watched them grow, giving me the evil eye from the ultrasound screen. These cysts can eventually lead to needing dialysis. I put the scan results away in the drawer as well, telling her that kidneys are a lot like marriages: sometimes it takes two to end up with one good one. And she knows I’ve got one going spare she can have whenever she wants it.
HNF1B gene deletions are extremely rare, and the medical profession is learning more all the time. So we often walk into appointments to find six or eight consultants ready to peer at my curious child. But the gift that gene deletion gives her is utter fearlessness. She is immune to social anxieties, happy to talk to the doctors and tell them how it all is.
We’ve also learned that people with HNF1B gene deletions are at higher risk of depression and suicide. It’s knowledge I never asked for and am still not sure I want.
That doesn’t mean avoiding the subject, though. Recently, a train we were going to catch was delayed ‘because of a person on the tracks’. We chat about why people try to end their lives, and why some people might not see a point in living. I remind them that a mother’s greatest fear is to outlive their child. I see myself sneaking imaginary letters under her bedroom door, introducing topics by stealth.
But what about this scan? If your child was missing a womb, how would you tell them and when?
I have a well-practised refrain that ‘we are all different and being different is what makes life interesting’. But this goes well beyond a kidney cyst or not understanding why people cry.
I picture her future. Will she one day find a partner and have to explain she can never have a child? When will she drop that bomb… on the first date? The day they get engaged? There are so many questions, none of which I feel grown-up enough to answer. I have so far been taking the coward’s way out. That’s a recurring theme in my life right now.
In February, I had surgery to cure me of severe nocturnal epilepsy. I contracted meningitis post-surgery and my skull had to be reopened twice to clean out the infection and later remove a section of my skull to allow my brain to heal.
It explains my recent choice of vegan bookshop-owner hairstyle. Even back then, I took the coward’s route with my children, who are 11, 10 and seven. I didn’t tell them why I was going into hospital. In fact, I lied. I told them: ‘Mummy is just going for a few tests.’
My cowardice is a strong theme. I’m too cowardly to deal with the appointment on the kitchen side for my daughter’s scan, too fearful to be honest with the seriousness of the operation I faced.
I was too cowardly to face a lateterm abortion when I found out at eight months pregnant that my lovely daughter was genetically abnormal. I knew something was wrong at my last scan. You’ll know how these scans work. Endless measurements of the femur. Click. The head circumference. Click. Total length. Click. Heart and lungs. Kidneys… silence.
And then the operator said she just had to pop out and ask someone to come and take a look.
I knew the news was going to be bad. When medical people need to pop somewhere or pop something in or pop a tube down, agony is never far behind. And so it was for me. At eight months pregnant, round and waddling, cankles where my ankles used to be, my paediatrician told me my daughter had massive kidneys, measuring off any scale they had.
She might be born with them growing outside her body. She could be stillborn, live one hour, live one day, one week or a year. Did I want a late-term termina-
‘I picture her future. Will she one day find a partner and have to explain she can never have a child?’
tion? And if I am honest, it was not my kicking, hiccupping daughter who made me brave enough to keep her, it was fear of the other. Fear of a late-term abortion. The sheer horror of giving birth to a fully developed baby, made dead before it left the comfort of my womb. It was all too cruel.
But, of course, my feelings have changed. The day she was born, I knew I’d kill for her. I would happily throw myself at anything trying to take her from me. I learned the fear that anyone would ever take this lovely little doll away from me.
Now, 12 years later, she’s the apple of her grandfather’s eye. Yes, she is different. She sees the world at 90 degrees, finds comfort in the rational, is lost in the emotional, wrapping herself in routine, process and rules for reassurance.
The teenage world she is boldly striding into will not make sense to her. The unspoken language of looks and subtle inference is foreign to her, innuendo and facial gestures an anathema.
But because socially she is wrapped in the rational, she is also protected. She is brave. She can stand in front of 100 people and make a speech without fear. Because as long as she has learned it, practised it, and rehearsed, what can possibly go wrong?
As a woman recently shaved bald by surgeons, she’s taught me a great deal. She’s taught me that it doesn’t matter what people think. That vanity is wasted effort and focus on rational matters is a powerful defence against the irrational emotions gushed at us 24 hours a day.
She has proved medicine can tell us only so much – that no scan could ever predict she would walk into her Grade 4 piano exam relishing the chance to show how she can play by the rules, fearless because nerves don’t come into her world.
And she has shown me I need to be braver. So I will take that letter, and we will go to the scan to see if she has a womb. My daughter may never be able to have children. And while I cower at the enormity of that news, I know she will accept it as another simple truth of her life.
She is brilliant and brave. Marching forwards, accepting we are all different. She tells me that is what makes life interesting.
And this is a good thing.