Thalassemia in Pregnancy

As you have probably guessed by the altered tagline of my blog and previous post, I am pregnant. In approximately 12 weeks time I will have another little person in my life that will need my undivided love and attention. It’s an amazingly, exciting yet scary time. I’m now in my second trimester and everyone and all the literature  I have read tells me that the second trimester should have me feeling my best. My most energetic. In fact I am at my least best. My least energetic. Don’t get me wrong, I am enjoying this pregnancy and I love being pregnant. I love hearing my baby’s heartbeat. I love seeing my baby on the scan monitor. I love feeling my baby kicking inside me. I love the changing yet deeper relationship I have now with my husband.

What I don’t love so much is the tiredness. The exhaustion. The Beta Thalassemia Trait/Minor I inherited from my father. I always usually joked that all the ‘unfortunate’ aspects of my physical make-up I inherited from him: my height,wide hips, my frizzy hair, blood disorders. Thalassemia Trait is a blood disorder that results in a reduction of haemoglobin or in other words a lack of oxygen in my blood.  People with the trait also have pale skin, weakness, tiredness and are also prone to breathlessness and mood swings.

Thalassemia Minor is the fortunate kind though, the kind that you do not suffer from any great symptoms – except when you are pregnant. The oxygen in my blood is now low enough for the doctor to have signed me off work until my maternity leave starts. For the first time my iron levels are also falling and I’m sitting here now, stubbornly trying to write this blog entry while fighting the desire to sleep.

The trouble with Thalassemia Trait is that apart from perhaps looking slightly pale, there are no other outward signs to others. In fact, this past weekend I was told on several occasions how well I looked.Other people play down the severity, others play it up while it is clear that no one really understands what it feels like unless you too have Thalassemia. My haemoglobin and iron levels have fallen suddenly which has caused me to faint or to feel substantially dizzy. I am now scared to drive and am nervous of travelling alone. Each time I go out, I worry – even when I am with others. I feel I can’t plan anything as I don’t know how I am going to feel from one day to the next, even from one hour to the next.

Since becoming pregnant, I have researched countless times for information and details of being pregnant with Thalassemia, even Thalassemia Trait. The only information I have been able to find is the effects of Thalassemia on the unborn child. I have been constantly told babies are like parasites and they will take all they need from the mother. I hope that my children do not inherit Thalassemia, particularly if I have a daughter. Even if they do though, I truly believe I am best placed to understand than most what it means to have Thalassemia and what it actually feels like.

The care I have received has been such that I feel like I’m constantly fighting for someone to listen to me. Constantly fighting for the head consultant in the hospital to monitor my haemoglobin, to reassure me that there are actions that will taken should my iron and haemoglobin levels fall even lower. I have been faced with misdiagnosis and thank goodness I stuck to my guns and did not follow the medical advice I received for the sake of both myself and my unborn child.

I don’t understand why there is no information out there or at least information that is readily available for those suffering from Thalassemia, whichever group the individual has inherited. It was only today while conducting research for this post, that I discovered people with Beta Thalassemia are prone to changing moods while all along I thought and was always told I was just being moody. Now I know there is a reason to my mood swings. Not only that but it is well-known that pregnancy causes a mix of emotions so a question for you: does this mean my emotional rollercoaster ride during pregnancy is twice as fierce?

So many changes have taken place recently. One day I am working, the next day I’m not. Reading and writing once grounded me. It was what used to drive me. Although the baby and thoughts of the baby ground me, the written word provided the stability I needed. Both reading and writing remained the only familiarity I had in what has sometimes been an unfamiliar world.  Now I feel my mind is so crowded, I am so exhausted that I have lost my passion and drive. I feel I have at least three books inside me just begging to be let out to play but I won’t let them. I just can’t help but wonder if I had been forewarned about the possible side effects of Thalassemia on pregnancy, I would be better prepared. Still, Alphabet Games remains my constant outlet, my familiarity in an unfamiliar world. I’m hoping that in clinging to the WordPress cliff edge, I will eventually have the strength to climb to the top and in some ways to safety.

Do any of you suffer from Thalassemia or know anyone who does? Do feel free to get in contact with me through my blog. I think perhaps it is about time a support group was launched for Thalassemia sufferers. Looking forward to hearing from you.

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7 Comments (+add yours?)

  1. Ruby slippers
    Sep 12, 2012 @ 21:06:56

    God bless you and I hope you are successful with a support group! Xxx


  2. grandmac
    Sep 14, 2012 @ 12:57:36

    Hope you get some replies from people in a similar situation so you can support each other. No need to worry too much unless your Hb falls to below 8. Just make sure that at the time of delivery everyone knows what your Hb is so appropriate action can be taken. Good luck! X


  3. alphabetgames
    Sep 14, 2012 @ 15:05:46

    Thank you for your support. Will keep everyone updated via Alphabet Games. xx


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  6. Cappio17
    Oct 16, 2012 @ 00:47:43

    Thank you for this post. It is 8:45pm and I am comng to the end of an 11 hour shift at work. I am 26 weeks and have had a good pregnancy thus far. I did begin googling about this. I do have a three year old and I am working FT, however even after two full days of, I am so beyond exhausted I could cry. Literally not move from the couch. I am going to speak with my doctor about this. I too inherited it from my father, Italian. I feel there is a lack of information and support on this subject as well.


  7. alphabetgames
    Oct 16, 2012 @ 09:13:14

    Congratulations on your second pregnancy! I really feel for you and I’ve been exactly where you are. In fact I’m still where you are. What makes it hard is that there is so little information/support out there. I’m now 30 weeks pregnant and next week have an appointment with a haematologist. I have been signed off work until my maternity leave starts which has helped. Each time you see your midwife, I definitely suggest having your full blood count taken, including your Hb count, feratine, B12 and folate. Definitely speak to your doctor and ask to be referred to a haematologist if possible. Unfortunately only those with Thalassemia know how low and how tired we really feel. Good luck and if you need support, do drop me a line.


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