'Marriage with strings attached' Article published in The News International

The News on Sunday, 22 November, 2009
http://www.jang.com.pk/thenews/nov2009-weekly/nos-22-11-2009/dia.htm#4

awareness




Marriage with strings attached

Interestingly, the NWFP PHB 2009, which makes it mandatory for a prospective couple to get their blood tested for hepatitis C and thalassemia, envisages no mechanism for its implementation

By Ammara Farooq Malik

Six and a half years ago, if someone had asked me what a blood disorder was, I would definitely have shown my ignorance. My family had no history of blood disorders and so I could not have imagined in a million years what was going to happen to my own child.

It is high time that someone who has experienced the misery of having a child with a blood disorder spoke out. Every single person who is affected by a blood disorder, thalassemia or leukemia, wishes that no one should have to go through so much pain. It's just that very few people who are directly affected by this disease have the courage to put their depression and misery aside to speak up for others.

One such person was 24 year old Salman Mahmood, a thalessemic, who died this October trying to raise awareness about the difficulties faced by such families. Salman died advocating that at least premarital blood screening should be made compulsory in Pakistan.

Facts about thalassemia

- Pakistan has more than 1,50,000 thalassemia major cases.

- At least 10 per cent of Pakistan's population or one in every ten persons is a thalassemia minor carrier.

- There are 5,000 to 6,000 thalassemia babies born every year.

- The estimated birth rate of thalassemia-affected children is 1.3 per 1,000 live births.

- At this estimated rate, the number of thalassemia cases will be doubled to over 200,000 in the next 10 years.

- The national exchequer incurs an expenditure of approximately Rs 130,000 per thalassemic child annually.

- These are only estimated numbers, the actual numbers (including the unreported cases, the deaths following birth and the cases involving other blood disorders such as enzyme deficiencies) are much higher.


A cry of joy ran through the families of children who heard this November that the NWFP government had finally passed the NWFP Preventive Health Bill (PHB) 2009. The Sindh Government had also passed a similar resolution in October to make blood testing compulsory before a couple decides to get married.

According to Health Secretary Khushnood Akhtar Lashari, the government is working on legislation for compulsory blood screening before marriage to protect newborn babies from thalassaemia and added that the bill in question had already been sent to the National Assembly Standing Committee. However, the matter has not been raised for further debate in the Parliamant yet and one hopes that further amendments to the proposal can still be considered before such a bill becomes a law.

Interestingly, the NWFP PHB 2009, which makes it mandatory for a prospective couple to get their blood tested for hepatitis C and thalassemia, envisages no mechanism for its implementation. There is a sanction imposed upon the Nikkah registrar that in the event that he is unable to register the test reports of the couple before the solemnisation of marriage, he will be liable to have his licence as registrar revoked. If, however, the couple decides to by-pass the registrar and get another individual to solemnise their marriage without such blood test results, that person shall be fined Rs 10,000 only.

The premarital blood screening can save not just one life but the lives of all the members of such a family which has to deal with the financial and emotional difficulties of hereditary blood disorders.

Former Dean of Children's Hospital, Dr. Sajjid Maqbool, is of the view that making blood tests compulsory before marriage would be very useful. He also suggested that a media campaign should be launched to create awareness about such a proposal.

However, where there are supporters of the cause there are critics too. A famous hematologist in Lahore, on condition of anonymity, gave a half hearted response to such a proposal, saying: "How can such a law be made? It would be impossible for everyone to get their blood tested. It's so expensive. Such laws suit other countries more than Pakistan."

Saudi Arabian case

Granted that Pakistan has a host of problems, but one of them does happen to be the rise in the number of thalassemia and other blood related disorders. Many other Islamic states have similar laws on the point. In Saudi Arabia, blood screening for thalassemia before marriage became a law in 2004.

Though initial research findings of the premarital screening programme under the 2004 legislation in Saudi Arabia, which has included tests for AIDS and hepatitis since 2008, are rather sobering, one has to give this programme more time to show positive results.

According to a study published in 2007, of 488,315 individuals tested, 2,375 couples were rated 'high-risk'. A total of 89.6 per cent of these couples got married despite the risk involved while only 11 per cent of these couples decided to call off their weddings.But the point is: at least 11% did.

A Pakistani couple that decided to settle in the UAE and had a thalassemic child eventually decided to undergo a risky bone marrow transplant to cure their daughter. Now after almost six years of good health, the parents are keen to help others to fight this disease as well. When contacted to express their views about such a legislation in Pakistan which can help control thalassemia, the mother remarked, "It would be wonderful if such a law can be passed in Pakistan. Thank God, it's compulsory in the UAE to have oneself tested before marriage…so by the time it's my daughter's turn to get married, we can make an informed decision."

In Pakistan, it would be difficult to lay down one uniform law for all provinces on this point, considering we have a very low percentage of high literacy rate and access to healthcare facilities. But according to Barrister Ahmad Farooq Malik, who is an active volunteer at a health and social awareness think tank: "What can be done here is that at the time of making the national identity cards, an evaluation of blood type and testing for thalassemia traits should be done. This will ensure that people can know their status of hereditary conditions before they get married."

The NWFP law does not force a high risk couple to not get married. However, it focuses more on letting the couple be informed about the consequences of their decision. The law further requires the registrar to keep the blood test reports for a period of two years. The problem with this requirement is that medically a report for identifying thalassemia traits may remain valid even after two years but a test to identify hepatitis may not be valid even after a few months. Saudi Arabia requires men to get themselves tested for thalassemia and HIV every time they are about to enter into wedlock and acknowledges such blood test reports to be valid for a period of six months only. According to health officials, "The disease spreads because of intermarriages. As a result, the disease is carried from generation to generation,"

Mufti Kafayatullah, a JUI member, validly opposed the NWFP Bill on the grounds that it would be very difficult to screen people in places such as Kohistan and Chitral. One can argue logically here that it is the responsibility of the government to allocate funds within the provincial budgets to make allowance for such compulsory screening. There is no point in making a law where there can be no possibility of its implementation. Naturally the person who will have to bear the brunt of such a legal violation under the PHB 2009 will be the nikah registrar or any other such person who will solemnize the marriage without having the requisite test results. When the poor and possibly uneducated residents of Kohistan and Chitral will not be able to afford the tests themselves then they may work their way around the law and get married anyway, giving rise to corruption and legal violations.

The government allocated a 20 per cent increase in the Fiscal Budget 2009-2010 for the health sector. However, sources said that the programme for the prevention and control of thalassemia had been discarded due to the financial crunch. Philanthropists and NGOs must step forward at this stage after the passage of the PHB 2009 to urge the government to allocate funds for the implementation of this law because without it, the spirit of this law and the morales of 150,000 thalassemia major patients and their families will indeed be crushed.

Though this law may not be the only solution for protecting people from HIV/AIDS and hepatitis, it certainly is a way to avoid a hereditary disease which cannot be checked by safe intercourse practices, women's empowerment or accessibility of quality services.

There may be doubts about the law's implementation and effectiveness, but this bill is a first step in the right direction. A parent whose child has thalassemia remarked, "This is a very positive step. This can save so many people the agony of having a child who has to have a life of transfusions and pain…and who may possibly die just by the age of 10."

What such a health policy gives a couple is a CHOICE…a choice many couples were not able to have. Couples may feel that they still want to go ahead and get married despite knowing that they are thalassemia or other blood disorder carriers, but then they will become solely responsible for the health concerns of their off springs. If the effects of thalassemia and other blood disorders can be fully explained then hopefully with more awareness, not many couples will be willing to live with this guilt of knowingly bringing a child in pain into this world.

The writer is an academic lawyer and founder of SEPLAA , a health and social Think Tank. She is currently writing her memoir on dealing with bone marrow transplants and can be reached at ammarafm@gmail.com

Leukemia in Lebanon, remembrance in Lahore: Part 4 concluded

My heart missed a beat as I clicked onto the message…It was a message delivery failure. I had apparently written the address wrong. I was a little annoyed with myself but then decided to email again.

The next day there was no electricity the whole day, the UPS was not working either. There were terrorist attacks inside Lahore and I was beginning to think….If there was a person who had a life threatening problem or a disease and needed to get to the hospital, how would that person be able to dodge the terrorists and reach the hospital in time? That person would never get another chance, even if he had the money, even if he had the will. Who are these people who don’t understand the basic expectation of a human being from life? The fair expectation to have life and health and happiness…

I was very disturbed that day. I didn’t understand it. Why was this all happening? What is the meaning of all of this? What is our role in this great design? In which there is the yearning for health and happiness, the artificial standards ordained by ‘money’ and the politics of terror?
After watching the live coverage of the terrorists’ attacks the whole day, I finally remembered I had to check my mail. Late at night I opened my inbox and there it was, a message from Dana. It was a three liner, written in bad English but sounding exactly the way she used to speak.

These were her words:

‘HI MY DEAR DO YOU BELIEVE THAT TODAY I LOOKED A LOT FOR UR MAIL I DIDN'T FIND IT AND LOOK YOU SENT FOR ME,WHY TO KNOW MY NEWS WHAT YOU WANT TO HEAR ABOUT ME I AM VERY SAD I HAVE A BIG LOST BUT I GAINED AN ANGEL IN THE HANDS OF GOD...ALLAH YERHAMA YA RAB SHE LEFT US LAST SUNDAY ON OCTOBER 4TH.PLEASE TELL ME ABOUT YOUR GIRLS..... ‘



I knew that Yasmin was going to die but now that I heard the news, I felt this sickness surge from the pit of my stomach, engulfing me completely. I think I would have preferred not hearing about her death.

The next day I wrote back to Dana.


‘My dear Dana,

I received your email yesterday but I had no strength to reply. I was afraid of hearing this sad news from you and to be honest, I did not want to call you up because I could not bear the thought of hearing about Yasmin's pain. I wonder if you will understand this, but I even thought of not contacting you at all so that , that way Yasmin lived forever in our memories because we would never hear about her passing away.

I can't explain how much you and your family meant to all of us in the most difficult period of our lives. Yasmin was like my Bilquis to me. We may be strangers in so many ways and we have such a lot of distance between us, but because of the friendship that our little daughters had together and because of the friendship that you and I had together, in those haunting days in the hospital, I feel I am closer to you than I am to any of my closest friends.

I had dreams about both Yasmin and Bilquis together...I will never forget her resemblance to Billy in many ways, Tammys being like our Dina and frankly, your being so much like me. I often felt that your family was so much like ours. Maybe that is why, your loss seems like my own.

As I write this, I feel like I am writing about my own daughter not being there anymore. I pray to God that you come out of all this to live life to the fullest with your Tammy. She needs you too. And you need her to remind you, everyday of your life, that God gave her to you to comfort you in your grief and to give you joy again in your life.

As for Yasmin, she will be living in a beautiful house in heaven where she can play with the flowers and the butterflies and always look pretty and have no pain. She is in a much better world and God will take care of her better than anyone on earth...but then you already know all of this. And you know what she will do in her beautiful little house? She will pray for you and Tammy and Haitham so that you all meet again. I pray to Allah that you do and when you meet, you have a life time of happy memories to tell her about.

I really do not have the courage to call you just yet. My husband and I are deeply affected by this news and we both really want to talk to both of you. Can you give me your husband’s cell number? My husband really wants to talk to him. I will call you after some weeks...I hope you can heal a little by then. If you would like to write about anything about the last four months that might help you to feel better, then I would be so thankful that you decided to share with me. If not, I will completely understand.

I would like to keep in touch with you, if that's okay

With my deepest condolences, prayers and love...’




A week has passed since that email and I never heard back from Dana. I know now that she will never contact me again. We shared something in pain, but we have almost nothing in common now. On the contrary, it might hurt her more if she stayed in touch…I still wish her all the best and wonder if our paths will ever cross again in life.

Leukemia in Lebanon, remembrance in Lahore: Part 3

I did end up calling her then which was three months ago. Dana was driving the car and the kids were sitting behind her. I could hear them, screaming and shouting and laughing aloud in the background…And Dana explained that they were going to see a saint just then.

‘We’re going to all the saints in the city, these days. Yes, yes, things are good, things are fine.’ And then in an undertone, almost a whisper, she added, ‘I will write to you …. I will write to you about everything. I have to go!…’

She never wrote back.

She never wrote and I just waited wondering. I never stopped thinking about Yasmin. I knew that while we were going on living our lives doing the rounds of the hospital, the Lebanese family had not been fortunate to have that second chance at health, the chance that perhaps we were getting, with my daughter’s life.

I wrote another email to her telling her that I hadn’t forgotten Yara. I could not forget Yasmin, ever. We had lived together, both Yasmin and my daughter…Dana and I, in the same room in the hospital for a week. They were our room mates. Our children had played together, laughed together through the pain, given each other hope and given each other something to be happy about through the agonizingly long days. They shared that little something to look forward to, some little story, some little cartoon to watch together or some little game to play together. I’m so thankful to God, that my daughter had those few days of happiness in the hospital because of that little girl Yasmin because my daughter was distracted from her own pain and her own suffering, her own needles being pierced through her, the pain of the chemotherapy, and the pain of not being at home like a normal child. I would have to be cruel to forget Yasmin…


Four months had passed since Dana’s family had left Italy to move back to Lebanon. There was this nudging feeling that I needed to find out what had happened to Yasmin. And I was subconsciously putting off calling her for fear that I might catch Dana in the middle of caring for Yara in her last minutes or last moments. And I didn’t want to disturb her. I didn’t want to intrude upon those last moments.

My husband urged me to call. Why aren’t you calling up Dana, don’t you want to call? And I asked myself, to hear about what? I know Yara was going to die but how do I ask Dana to confirm, that which I know is the inevitable?

I decided to send a one liner email asking how she was. The next day I got a reply...

Leukemia in Lebanon, remembrance in Lahore: Part 2

Continued from Part I

We stayed on in Italy where my daughter was being treated. I emailed Dana once after our last meeting, hoping to get a reply but she never did. I of course had no complaints. I was sure that she must be busy rushing from one hospital to the other, bringing Yasmin home for the few moments of respite that they could get in the midst of all the medical tests, nausea and discomfort. They would be trying their best to cherish those few moments of relief they could get away from the hospital, by seeing the two little sisters playing together.

My heart goes out to both of them, to both little Tammy and little Yasmin because they were like my own daughters. And I know that when Dana and Haitham saw my daughters together there was this deprived look in their eyes, a longing and a certain yearning to see their own daughters happy and together for many years to come.


Though my own daughter was going through a very difficult period, it was probably that suffering that brought us together, a family from Pakistan and a family from Lebanon, together in a strange world in Italy.

I can only imagine what could have happened in the past four months. Yasmins blood counts must have started dwindling. She must have started losing weight, must have lost her appetite. And Dana must have been running after her ‘Please eat Ysmin, please eat. Eat so that you can be strong. PLEASE. Please….please.’

A month after they had left. I secretly thought that maybe Yasmin wouldn’t have died just yet and maybe things were not so bad. And so maybe I could call them…

Leukemia in Lebanon, remembrance in Lahore: Part I of the Italian journey

I recently found out what became of a dear little girl Yasmin (I've changed her name to protect her identity). I thought I'd share a little bit about her here since she was supposed to have a bone marrow transplant...

As I write this my heart is filled with a sadness I cannot explain in words. I can still picture Dana and Haitham, the Lebanese couple who had an ailing eight year old daughter, Yasmin, being brought in to the hospital, the Policlinico San Matteo, in Italy.

After spending a month in the Italian hospital and going through chemotherapy for her chronic leukemia, the doctors in Italy had told her that she had no hope left. The parents, Dana and Haitham either had the option of putting their daughter, suffering from leukemia, fighting it with successive chemos, since the past five years, to go through an experimental bone marrow transplant (the effects of which were completely unknown and so risky that there was a likelihood that she could have abnormalities or severe complications for the rest of her life)…or they could take her home. I remember Dana’s words, four months ago, when she was telling me all that the doctors had finally told them. She said, ‘They want us to wait and take her home. And I’m supposed to sit home and wait for my daughter to die? Just like that…Why did my daughter have to come so far away from home to go through so much suffering?...’.

I think some amount of reason prevailed and Dana and Haitham decided then that they would rather go back home to Lebanon, to their little three year old daughter Tammy. They wanted to let the two little sisters play together and be together for possibly the last few months or weeks of Yasmin’s life. Nobody knew when she would go, when she would die. Just that it was near the end…

Huma Waseem's untimely death: Medical Negligence, ignorance or fate?

I'm home these days with my daughters. The schools are still closed because of the security concerns in Lahore and it is almost impossible to be able to sit down and write but I'm trying very hard to stick to a schedule (even if it's jeopardised because of an irregular turn of events both at home and in the country)

Today, I'm feeling a little ill with the viral infection coming on...so I thought I'd write on my blog rather than rake my mind to write about old and some very painful memories ( my intense memoir!)

The T.V. is showing glimpses of Huma Wasim's funeral procession and I am myself feeling very sad that such a fine lady had to go before her time. Yesterday, the hapless mother of Waseem Akram was weeping and lamenting that the 'doctors at National Hospital (Defence, Lahore) gave Huma some wrong medicines because of which everything went wrong...'

Now that is a serious allegation if made in front of a tv camera of a media channel watched by millions of Pakistanis all over the world. Todays newspaper gives no particular specifics about the cause of the 'multiple organ failure' which resulted in Huma's kidneys to fail, for her to develop a brain tumor and for her to eventually have a heart attack on the Air Ambulance transporting her from Pakistan to Singapore. Ofcourse poor Huma couldn't make it during the flight and so the chartered plane had to land at Chennai where Huma after being rushed to the Apollo Hospital, breathed her last.

I will be very interested in seeing if anything will come out of this alleged 'negligence'. I think that it will be a matter of days before everyone will get back to their lives and their busy routines and everyone will forget about this yet another life (possibly) brought to an early end because someone was either not doing their job or because they did not have the means to do it well.

How can transfusion dependent children get used to needles?

Do transfusion dependent children ever get used to the scary needles?

It's heartening to see little children born with blood disorders or those who unfortunately are diagnosed with leukemia to be tested repeatedly through blood tests.

The blood tests have to be conducted through blood drawn through the veins in the arms or through the veins on the hands.

When babies have to be tested, the worse part is that their veins are too tiny to be easily visible and so finding the right 'spot' to prick the child with the needle becomes a tricky part. Often the needle is pricked and the nurse or doctor has no choice but to move the needle left, right and centre so that the blood starts coming into the vile or tube.

The needle can become such a traumatic sight for the child that some children develop a fear of needles for a very long time, some times even when the prick does not hurt that much. On the other hand there are children who become so used to the prick of the needle that they hardly even wince when they are pricked. This later case is a relief for parents who have to see little children aged less than 6 years of age, go through repeated blood transfusions or phlebotomies for blood samples being drawn for tests etc.

The best thing for parents to do would be to let the child feel safe in their arms while the needle is being pricked. Hold the child tight so that the child does not move. Any untoward movement will very likely mean that the child might need to be pricked twice.

A local anesthetic cream for children called EMLA is very effective too. It helps to numb the area where the child is to be pricked. However studies have shown that long term and prolonged use of EMLA is harmful for the veins of the child, so use it only when you know that the spot that's going to be pricked is an especially sensitive spot (such as the inner wrist, foot, scalp etc. which can be very painful spots for children to have needles inserted in).

Getting used to needles is something that happens so gradually that even the child does not notice that he or she is getting accustomed to the pain. But this happens only with thalassemia or blood disorder patients. Leukemia child patients who may develop the disease after the age of 6 remember the pricking sensation of the needle very vividly and usually find it hardest to adjust to the prick of the needle.

At this point, doctors usually suggest a Central Venus Line to be inserted in the chest of the child patient. A CVL is a tube dangling from the chest of the patient which has to be inserted into the body normally through an incision in the neck and it is inserted into a main vein close to the heart. This vein then comes out of the chest and hangs there with a clip attached at it's end to open and close the valve of the tube.

Once inserted a CVL is an extremely useful device to give the child iv medicines, transfusions of packed cells (Red Blood Cells), platelets and even a bone marrow transplant.

A child becomes much more relaxed and the best part is that the CVL can be used daily for drawing blood samples for testing too.

In cases where a child becomes very difficult or scared of being pricked, doctors sometimes suggest (if they are convinced that the child will be pricked repeatedy in the future too) to get the child a CVL. A CVL can function without any major problems for ypto 6 months. After which time a fresh CVL will need to be srgically inserted under general anesthesia.

One of the biggest risks of having a CVL inserted apart from the risks involved in surgery, is that the tube can be a HUGE source of infections. So though the CVL will help the child through a lot of pain, an infected tube, especially where blood counts are (probably) already not normal, can become a cause of death.

I've written a small explanation of some key terms that I feel parents who have blood transfusion dependent children should know. If any one would like to add to the thoughts expressed above then I would be very happy to hear. My daughter has had around 100 transfusions, several before and some after her bone marrow transplant.

My daughter did become used to the needles at one point but when she had a break from the pain for a few months, it was a whole new dilemma. I'm writing about my experiences with my daughter in my memoir. hope it helps other parents and many doctors who have to deal with child patients in such predicaments.

Until we meet again!

Stay positive for the children!