As if Hemophilia was not enough that we got a topping of inhibitors!

 

As if Hemophilia itself was not enough for us that we got a topping of inhibitors

Hello everyone! This is Preeta, a full time mom and it's about my 8 year old son who has severe Hemophilia with inhibitors.

Some say that it's just a health condition and it should not rule our lives but in our case, it does rule our life. Becoming parents is very easy but being good and caring parent is a difficult task. Never thought, it will be so difficult!!!

Life was all beautiful till 15 months after my son's birth. And then in June 2007, a cut inside his upperlip changed our whole world upside down. The bleeding didn't stop for 3 days and then he was diagnosed with severe Hemophilia A. It was a shock to us as we never heard this word earlier. Being math students, both me and my husband never heard or read anything about Hemophilia. Leave us, most of the doctors also don't know anything about it, except that they had to learn a page on it in their medical course book. Anyways we went to 3 hospitals of Bahrain (a tiny Island in Middle East) to know about hemophilia and it's treatment but found very little answers.

By that time we had Googled and all we could understand was its a life threatening bleeding disorder with unimaginably expensive treatment. We were shattered!! We went for a 2nd opinion to the main government hospital, the Haematologist recommended us to shift back to India because they didn't have any pediatric patients and moreover, the Factors(medicine) were not free for the expats.

We shifted to Bangalore, India but the best part was no free treatment there too! Our house didn't have any hard furnitures to avoid injuries. Our living room was fully mattressed which was amusing for some. At least factor was available even if we had to pay for it when required. Then one night in September 2007, my son fell with a plastic whistle in his mouth and his upper palette was injured. He was treated vigorously for 4 days with factors but the bleeding didn't stop. We even told the doctors why not to check his inhibitors(antibody) but they ignored and told us - Oh, it's a mouth bleed and it will take time to control the bleed! The very next day we noticed that our son was inactive, dull and was almost losing breath. Doctors came and then decided for blood transfusion because breathlessness was due to low Hb(haemoglobin) level(due to loss of blood). He was in the ICU for 6 days. We thought we lost him and then it was diagnosed that he had high titre inhibitors (76BU). Life's another blow! Sometimes I feel, for some doctors we are just like guinea pigs and due to a nurse's negligence our son was given double dose of FEIBA (can be life threatening if given in more than required dosage) even after my husband's clear instruction on dose calculation and the way of administering it. Lesson learnt was - always to be vigilant especially with Intern Doctors and nurses. All these 6 days I couldn't gather the strength of facing my child. I never sat with him, with all those dying and critical patients around in the ICU made me worry more. Used to watch him from far away. Thanks to my husband and a doting father who sat all the time with him without sleeping, he knew I didn't have the strength. I had my parents and some great relatives around by then for support. During the treatment it was concluded that Novoseven(factor/medicine/bypassing agent) works better than Feiba for my son. But who can afford this???? We can't!! Again we were shattered and had no clue to deal with this. But as they say - Life goes on! So, all the ankle bleeds and a knee bleed till last August 2012 were treated with RICE technique as this medicine is way too expensive for a common man to afford.

We came back to Bahrain again in April 2011 because of recession and job issue. Then the first knee bleed happened in June 2011 and when we contacted the Hospital, we were denied treatment by saying that their hospital policy doesn't allow to provide novoseven for expats even if they paid for it. We were told by the doctor that it would have been better that we stayed back in India. True! At least we could somehow managed to buy there and treat.

After this incidence life has become very difficult for us. We are living with no treatment and no medical advice. I keep writing to different people and organizations for help, but no help till today except the few factors that we received from Project Share. Because of them we could treat our son's few bleeds. But again now we are living in fear. Lately lots of ankle bleeds have happened. Wrote twice to WFH and many others, but no help. I don't know when an affordable or free treatment for all will happen? Not much has happened in the inhibitor field and even not much talked about. What a pity that after all these years, still my son is living a life similar to the PWH who lived some 35 to 40 years back with no treatment.

Due to lack of treatment our son is most of the time confined to bed or sofa. He is a very bright, mature and sensitive child. Once when he was five and was resting for his knee bleed, out of the blue said to me - Mama, I'm sorry! I asked why? He said because of his hemophilia I have to read so much then write mails and also search for Factors. I was shocked that how such a small child can feel like this. It brought tears to my eyes. Can you imagine the plight of a mother!? A child of five should be naive, playful and behave just like any other kid.

We home school him. Since there is no validity to home schooling in India, he has been registered in a conventional school too and goes for exams only. Now he has missed 2 exams because of elbow and ankle bleeds. He is very good at drawing and crazy about Lego. Very intelligent and creative but has no social life at all. It's a world of just three of us. Thanks to Skype and Whatsapp that I am connected to my loved ones, where I can vent out my feelings.

I am scared all the time and worried about the next moment. Every morning I'm worried that when he gets up and walks, things will be okay or not. Same in the night before sleep, if all is well or else we will not come know what is happening while sleeping. I nag him constantly by asking all the time how he is, because most of the time it's me who notice that he has a bleeding.        
I am not a very strong mother who can put a fake smile even when I am low. I know that it affects my child and my husband too but I can't stop my tears when he has a bleeding. Isolation and depression has become part of my life. Most of the time people can't understand how a bleeding affects the joints. They think, by keeping ice and rest everything becomes fine. Each bleed is leading to joint damage. Most of the time, I try and explain everyone but sometimes I think why do I do this??? Does this matter to them??? It's our world, better to be in it. I won't lie, but It hurts to see others picture perfect world especially when they worry about very silly things.

Our son is our world!  We want him to have a proper treatment so that he can lead a life like others. Treatment is required now, not after all the damage has happened. These Governments (Indian in my case), Manufacturers and Hemophilia Organizations should act quickly and find a solution for "free or at least  affordable treatment for all". 

23rd May 2014

P.S. -  After our visit to CMC Hospital, Vellore which is best in India for hemophilia (June 2014), we have started using FEIBA (bypassing agent) as we were told that there is nothing like Feiba won't work. Sometimes one works better than the other. After June, many bleeds have happened. Buying FEIBA, every now and then is also not affordable for any common man in India. 

3rd February 2015