Health: Living with Alpha Thalassemia Trait

Way back in 2010 when I was pregnant with my son, I had the usual barrage of tests they give to pregnant ladies. I wasn’t really expecting anything to flash up in the results and I think my Doctor was as surprised as me to find that I had Alpha Thalassemia Trait, a genetic blood disorder.

My husband and I were quickly thrown onto a conveyor belt of further tests and genetic counselling. Something neither of us were expecting nor were in any way prepared for. Being pregnant and having a baby is scary enough, but when you find out there’s a chance of something unthinkable happening, your world turns upside down.

On its own my Alpha Thalassemia Trait is a bit like having anaemia. I’m a bit tired most of the time. I always have been. I remember being a teenager and family members telling me how lazy I was and how I didn’t have any get up and go. It wasn’t that I was lazy, I just had no energy at all. Thalassemia comes in various forms, some are far more serious than others and some people with other versions of the disorder can have terrible health problems. Thankfully Alpha Thalassemia Trait has pretty low-level symptoms.

As an adult, I learned to cope and manage my low-level exhaustion and factored those symptoms into my lifestyle. I can’t actually nap unless I’m ill, but rest periods are essential, as are lie-ins a couple of times a week. Caffeine is my friend, it gives me false energy and a little pep up when I need a boost to get me through. I work from home now and as much as I can I work when I’m energised and rest when I am not.

When I was first got pregnant in the days before I knew the reason why I was fatigued all the time, I was absolutely shattered. I’d do a days work, come home and get straight into bed. My husband would wake me up to give me a meal in bed and I’d fall asleep again. He’d wake me up later to make sure I had a drink and then leave me to sleep until morning. For a few weeks I thought I was seriously ill. I was just pregnant.

In terms of my health during my pregnancy it didn’t really affect me. I was advised to try to eat more iron rich foods and to rest when I could. I suspect that’s advice given to pregnant women regardless of their thalassemia status.

What I did find stressful, and it was something which definitely contributed to the deterioration of my mental health after my son was born, was the genetic counselling. It was supposed to educate us about the risks of having two parents with the disease, which is helpful, but at 18 weeks pregnant I was faced with the possibility that my baby could die if my husband also had this genetic anomaly. Until the test results came through I could not be reassured.

This dark cloud hung heavily over us while we waited for his test results to come back. My husband is half Armenian and thalassemia is prevalent in Mediterranean, South Asian, Southeast Asian and Middle Eastern counties. I knew this was a concern to the medical team treating me. It was a truly horrible time in our lives. The two weeks of waiting were torture. Thankfully his results came back absolutely clear and we were discharged from the Thalassemia Service and told our baby would be ok.

Alpha Thalassemia Trait is a strange condition. I have it but there’s no treatment for my minor version of it. There’s not a lot I can do to make myself better, I just have to factor in self-care where I can. The concern is that I will have passed my genetic anomaly on to my son. If I have then he will need to be cautious should he ever want children of his own. If he has it, then his partner will need to be tested to make sure that together they can have healthy babies of their own.

The test for Thalassemia is really simple, it’s a quick blood test. I’d never heard of the disease before I knew I was a carrier. It’s not infectious, you can’t catch it from me, not unless I give birth to you, which is unlikely. If you’re worried you may be a carrier it’s worth speaking to your GP and requesting a test, especially if you’re thinking of having a baby.

Health: Living with Alpha Thalassemia Trait

You can find out more about Alpha Thalassemia Trait by visiting this website.

This blog post does not constitute medical advice. I am just sharing my experience of  Alpha Thalassemia Trait.

Broody but broken – Why I can’t have a baby

I have a son, he was planned. He is an only child, that bit wasn’t planned.

I’d always thought I didn’t want children, I think I thought that because I’d always felt that I probably wouldn’t be able to get pregnant and if by some miracle I did, I’d probably be a rubbish parent anyway, that it wasn’t worth considering. I was wrong on both counts.

I got pregnant quite quickly; I was 34 when I had my baby and the pregnancy was the polar opposite of plain sailing. Despite the fairly terrible time I’d had, I knew as soon as I held him in my arms that I wanted more babies.

Life doesn’t give you do-overs, but looking back, I should have started trying for another baby as soon as I was physically ready, maybe a year after he was born. I waited, I regret waiting, and now I always will.

Fate intervened and put me flat on my back for the best part of a year. I couldn’t look after myself let alone my child. Two back surgeries, enough codeine to sink a battleship and a slow slide into depression scuppered pretty much everything in my life. I had to give up my job and change the way I lived almost entirely.

I look back at my old career and at times I do feel a tiny twinge of regret at its loss. In many ways I’m much happier now doing what I do. The thing I regret most is not being able to have any more babies.

My ovaries are screaming at me all the time. My body wants to be pregnant as much, if not more than my brain does. The getting pregnant bit probably wouldn’t be too much of a problem, it’s the being pregnant, the birth bit and then the looking after the baby bit afterwards. I’m 39 and some mornings I need help getting dressed.

My son is an only child, my accident has robbed him of a fully functioning mother and the chance of having siblings. I feel incredibly guilty about that and I worry that he’s lonely at home without someone more of his own age to play with.

So many of my friends are pregnant or they have new babies and I am delighted for them. I think most of them are sensitive enough to know that I’m struggling with this a little bit, and they’re kind enough to let me have extra cuddles with their little ones.

It’s a strange feeling knowing that everything that you need to get pregnant is fully functioning and raring to go, but that the rest of the body around that it is broken and incapable. I try really hard not to let my physicality get me down, but this, this is the one thing that bothers me the most, and the only thing I ever cry tears of self pity about.

I want a baby so much, I’d love to have that lovely round belly again, feeling little kicks inside me and sharing the excitement of the growing baby with my son. It’s a feeling I know I’ll never experience again and I could kick myself for leaving it so long to start a family. But what’s done is done. I’m just grateful that I got it right first time and made (to my mind anyway) the most beautiful boy in the world.

I can't have a baby

Did my husband lose respect for me after I gave birth?

I’ve always been the strong one, the one with the good career, fairly good salary and in many respects the wearer of the trousers. It was a role which suited me just fine, every ship needs a Captain and I wore the Captain’s hat with style and aplomb. That was until I swapped it for my Mummy hat and my husband had to help steer the ship himself.

I recently read an interesting article where a man talked about how his wife’s caesarean made her a total badass. I shared it with him and we talked a little about the traumatic birth of our son and his swift arrival via an emergency caesarean. It occurred to me that seeing me at my most vulnerable; naked and frightened, screaming for help, being cut open to have our child wrenched from my body made him see me in a different light. Did my husband lose respect for me after I gave birth?

I think before I became a Mum he saw me as strong, and I had been strong for us both, but now I had to be strong for our son first and us as a couple second. I was hormonal and weepy and I’d never been a Mum before, so everything was new and I was totally winging it, we were winging it together. I was also wrestling with undiagnosed PTSD which made me anxious, vulnerable and hyper vigilant. A storm was brewing inside me and I could no longer steer our ship effectively.

I wasn’t the high functioning girl in love with her career anymore. I was an exhausted first time mum, struggling physically and mentally. I’d made and nurtured our tiny perfect son but in the process I’d changed and I’d probably lost his respect.

He denies losing respect for me following the birth of our child, but what’s clear is that something has changed, there’s been a significant shift in our dynamic. I’m no longer able to play the role of leader and breadwinner, but instead fulfil the role of Mother and carer. To me they are equally important roles, but to others they are somehow lesser and not as deserving of respect and status.

I’d always thought that giving birth would give me a badge of honour worthy of respect. It’s a rite of passage which can be natural and beautiful, but equally it can be traumatic and bloody. Experiencing that and seeing me go through the birthing process should be worthy of respect, but it showed me up to be the vulnerable human that I am, and that changed things.