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!

A Warm Welcome To My Support & Guidance Group

Hello and welcome to my support blog for patients and their families who are going through chemotherapy, blood transfusions or a bone marrow transplant.

I'd like to begin with a background as to why I've started this blog.

I'm sure there are a lot of support groups out there that are run by psychiatrists or doctors but I felt that I had learnt so much in my twelve years of first hand experience in handling near and dear ones fight cancer and then see my own daughter struggle through over six years (to date) of transfusions and bone marrow transplants...that I know it is now my responsibility as a surviving human being to share all that I have learnt. If all that I write helps anyone in pain out there in any way at all then it would give me a deep sense of relief, contentment and humility.

There are so many little things the doctors don't explain and the psychiatrists sometimes overlook. Things only a person going through the pain can understand or a parent seeing his or her own child can feel.

I hope to explain many misconceptions of blood disorder related practical problems and the pitfalls related with bone marrow transplants in my posts.

I came back from Italy to Pakistan two months ago after my daughter got her medical treatment there. We experienced the most extraordinary incidents, some related with medical issues, some with pain, some with losing friends to death, some with language and communication issues and some even with clashes of faith, culture and racism.

I am deeply grateful to the doctors at the Policlinico San Matteo, Pavia, Italy, who did a wonderful job but....there are many 'BUTS'!

When we were living in Italy, it was something like living in 'un altra mondo' ( a different world) and I want to capture all the friendships made with people from different countries and faiths, the pain and suffering of chemo, the successes and the tragedies at the hospital, the politics and how it affected the patients... all in the form of a memoir. I know that this account will be most invaluable to patients, doctors, psychiatrists, social workers and ordinary people who will learn to live and enjoy the most precious gift they've got: LIFE.

I also want to write it because I want my 6 year old daughter's courage and struggle to not be erased and forgotten from memory...but to live on and give others the same courage and support that she gave to me. My daughter has really shown me how to live and I pray to God that she has a beautiful and fulfilling life ahead of her.

Since this blog is meant as a support group, please feel more than welcome to ask any questions which you might feel are 'too silly to ask the doctor'. It is my hope that I will be able to help but my promise that I will do my best to guide you.