When I was asked to do this blog it was pitched to me as ‘write about anything that affects your family’. Last month I wrote about how
becoming a mum had changed me, and I received lots of wonderful comments from women who felt the same. I don’t want this
month’s to resonate with anyone, but I know it will and that is utterly heart breaking.
A big part of my life as a parent is the fact I have cystic fibrosis. I have a strange relationship with the illness; diagnosed in
adulthood (CF is tested in the heel prick test nowadays so missing the illness is unusual) with a rare gene combination it does not
affect me like it does thousands of others. In its most brutal form it is a life-shortening disease with many lucky to make it to their 29th birthday (I turn 29 this year and do plan to go a lot further than that).
I often cough so hard I am sick, I visit a specialist clinic on a regular basis, I have permanent lung damage, I am susceptible to chest
infections, a cold can knock me for six, I was admitted to hospital after coughing up blood at 36 weeks pregnant. I missed a lot of
university due to digestive issues, sometimes making it to the lecture hall to then have to spend the hour I should have been
learning about Beowulf in a grim public toilet. I have a higher risk of diabetes and osteoporosis and this is an illness that will only
get worse with age. This is where I should step in and say that with a lung capacity of 85-90% I am actually extremely well compared to many.
Though in the three years since we decided to start a family I can tell that my health has deteriorated. Looking after a baby,
who then turns into a toddler, is not exactly conducive with self-maintenance.
I am actually well enough that the doctors have changed my medication to allow for extended breastfeeding and to have children
in the first place. The sad fact is that a lot of girls with CF simply will not make it to a child-rearing age, many women will be too
ill to carry a child and others who choose to start a family will do so knowing it is cutting their life span considerably. Many women
with long-term medical conditions do not have these options open to them.
This on the one hand makes me very lucky, but on the other hand means there is limited support and research out there. The main
way that my illness affects my family is that my partner is also a carrier. There was only a 4% chance of this happening. This means
there is a 50% chance of passing on the disease to our children. And I do not mean the milder presentation of the illness that I deal
with. I mean the life shortening, terrifying typical presentation of the disease that kills thousands every year. It is because of this that
we made the very difficult decision to terminate a pregnancy if we passed on the faulty genes.
Six months ago we were a family with a lovely story – such a lucky couple – even though we were going to face difficulties
we decided to start a family in 2013, knowing it may take years we thought we should take the plunge.
After only two months I was pregnant. After an agonising eight-week wait I had a placental biopsy
to test the baby’s DNA, and four days later got the exceptional news that we had a healthy girl on the way. What a story hey?
In October last year I had a miscarriage at eight weeks, too soon to know why or the sex of the baby. With all the CF worries this
was something that had not even entered my head, all I was thinking was ‘I need to get to 11 weeks and have the test’. It was like
having a rug pulled very brutally, deliberately and cruelly from under my feet. I grieved. I have never felt such a crushing
disappointment. There is no right way for any family to deal with this sort of loss. For me it was to carry on as normal – that isn’t to say I hid it, I am extremely open about it as I think this is helpful for women – but I wanted to go back to work
and I wanted to be pregnant again. The reason I was so crushed was that I had lost the opportunity to have a child so it made
sense to me that the only way to ‘fix’ me was to try for another baby. What if we were lucky this time?
On 30 January I peed on a stick and found out that once again I was pregnant. Once again all those feelings of worry came washing
over me. 50% chance to have another healthy child. Though this time I was deeply worried about another miscarriage. And thanks
to heavy bleeding on four separate occasions I was not given a break. I was scanned more times in my first trimester than most
women are in an entire 40-week pregnancy.
Each time the ultra sound showed a perfectly formed foetus and no reason for the bleed. And every time relief was quickly
replaced by anxiety. So once again I waited for the test. On 30 March we received the devastating news we had half expected
but never wanted to hear. We had passed on our mutated genes to a baby girl. The termination was booked by the genetic
counsellor, to save a grieving mother some admin but surgical terminations only happen on a Wednesday so I had to wait a full week
getting more pregnant as the days went by knowing that it would all end soon.
Now we are a couple to be looked on with sympathy and that is a hard shift to deal with.
And life just steamrolls on. Nursery drop offs and pick ups needed to happen, work needed to be told, our little girl’s 2nd birthday
party was a few days later so food needed to be bought and cakes baked, both her and I had the flu, nappies changed, baths given…
You can’t stop existing, let alone parenting, just because your world is rocking beneath your feet. Within four days of receiving the
news four friends announced their pregnancies to me and there were two high profile abortion stories in the news. It just seems like
unfair timing. Their reaction to these stories have proved to me that a lot of my friends are pro-choice which helps a little,
but they of course show that global politics around abortion are complicated, volatile and divisive.
No one will ever blame me for my miscarriage – though my initial reaction to the news, like so many women, was to apologise
to Joe – while my decision to terminate will be disagreed with by many.
This is of course their right; it is not their right to judge me for it. But they will.
The thing I have discovered through this process is that we, as a society, often lack the sufficient intricacies of language to cope with
pregnancy loss. People who want to comfort me say things like ‘at least you still have your daughter’, having one child does not
dilute my desire for a sibling for her. Having one other person on this planet that cares about her as much as Joe and I do is important to me.
One nurse referred to my third pregnancy as unwanted, when she was a very much wanted pregnancy. We don’t even feel
comfortable with the term baby or foetus. It is for this reason we decided to give her name. So I don’t have to go through life saying
the words ‘the pregnancy we terminated’ or ‘our unsuccessful pregnancy’ or even worse ‘you know, when…’. For me,
to have no words is not better than having the wrong ones. So at least when I am around friends and family if I need to talk
about a feeling or a symptom I felt this time around I can simply say her name and people will know to what I am referring.
A downside of this plan is that I might meet a little girl in the future who shares her name; I will smile sadly and tell her how
beautiful it is.
Now I have had the procedure Joe and I can move on, maybe decide we want to try again, maybe decide to give ourselves a break,
only time will tell. All I know is that I actually feel better. My heart broke in March; the operation was just the full stop at the end of a
week long, and difficult to take in, sentence. Once the day was over I came home and snuggled on the sofa with my two-year-old who wanted to feed after 12 hours away from me and I knew we had made the right decision.
What would I give not to do it again? Anything.