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Medical Miracle and a New Life for Matthew - Health Reporting

Medical Miracle and a New Life for Matthew - Health Reporting

November 2012
Health Reporting
Medical Miracle and a New Life for Matthew

At seven years old, one cannot say life has been kind to Matthew Ndik. He is a sickle cell carrier, but what made his case pathetic, is the fact that he was struck by a life-threatening stroke at that young age. His parents had given up hope believing he would not live long. Yet, a miracle came their way. Today, the young boy has been given a new life. Thanks to a group of medical personnel at UBTH. He no longer has sickle cell and he is on the way to full recovery.

Mathew was born a sickle cell anaemia child. The disease, which is chronic and life-long, had caused two of his elder siblings' deaths. Individuals who suffer this are most often well, but their lives are punctuated by periodic painful attacks and their life expectancy is often shortened unless adequately managed. He suffered the same fate like many others that suffer from the sickle cell problem. But, in his case, it was a more serious attack. Five days after his seventh birthday, he was struck by stroke; an unbefitting birthday gift, which is unusual in children in his age group, sickle cell notwithstanding.

He was rushed to the sickle cell centre in Benin City for remedy. Unfortunately, the centre had no clue on how to solve Mathew's problem. The mother cried and the stoic father wondered why fate had been so unfair to him.

But, that was not all for young Mathew. His parents, overwhelmed by his condition, practically gave up on him. This 'precious' son was abandoned for lack of money and he literarily became the 'property' of the sickle cell centre. No one made enquiries about him as they thought, though ignorantly, that Matthew would not survive the scourge. Somehow he found himself among the 10 patients referred to UBTH, whose human antigen was sent for 'typing' abroad and he was lucky as he had a matched donor, who, incidentally, is his elder brother, a 14-year old

"When we came back from Switzerland, our first task was to do what is called patient recruitment. And I had a seminar at the Sickle Cell Centre here in Benin and across the country, especially with the society of haematology. The Sickle Cell Centre had numerous number of sickle cell patients from where about 10 patients were referred to us. Though there were criteria for selecting those to be transplanted with the stem cell, not every one of them was qualified for that. Matthew had a severe case because he had suffered stroke earlier. He was also lucky to have had a matched donor, who happens to be his brother. So we became interested in him and the rest is now history," said Dr. Nsakhare Bazuaye, a consultant haematologist and specialist in stem cell transplantation at UBTH.

Dr. Bazuaye and his team of experts, who were trained for stem cell transplantation at the Bassel Teaching Hospital, Switzerland, decided to experiment with Mathew. Stem cell transplant was an alien therapy in the country before now. Fear was palpable but not enough to deter the determination of the young experts. The specialists were the only one sure of what to expect. The team was prepared and had taken what appeared to be a risk in executing the transplant.

But, like Mathew, they too had a date with history. By Wednesday, September 28, Mathew had his cells replaced with those free from the sickle cell disease. Nigerians yelled in astonishment and the world acknowledged. Everybody was happy. It was a novel occurrence in this part of the world. "At the beginning, it was a daunting challenge because most people felt it was unassailable but the minister was convinced that we could do something when he visited the last time. Here, we are looking at the beneficiary, we cannot count the cost because there is no way the patient can pay," Prof. Michael Ibadin, the chief Medical Director (CMD) of UBTH, recalled.

He said the breakthrough was achieved through collaboration with the University of Bassel, Switzerland, where selected workers of UBTH led by Dr Bazuaye were trained for a year and two months, respectively. Ibadin said though transplant treatment would cost between N2.5 and N5 million for a patient, the hospital, according to him, would have to be very selective in its choice of patients to reduce expected pressure and work toward acquiring more equipment for the transplant.

"The day we started, the drugs that were given to this child cost N2.1 million. It is not something you do on emergency; it's something you have to plan for. The hospital will be willing within the limits of its resources to subsidize the cost of the transplant," the CMD said.

The practice of stem cell transplantation, no doubt, is capital intensive and rests on hi-tech equipment. Investment in this regard would go into thousands of millions of naira. Just for a take-off, UBTH decided to start on a small scale and had acquired only basic equipment to commence the programme. Nigeria, Dr. Bazuaye said, is the third in Africa, after Egypt and South Africa, to perform such transplant.

Stem cell, he said, refers to primitive cells that have the ability to reproduce themselves and produce other cells. Patients suffering from cancer, leukaemia (cancer of the blood), thalassemia (a hereditary form of anaemia that is caused by a dysfunction of the synthesis of the red blood pigment, haemoglobin) and multiple myeloma, according to the experts, could also benefit from the transplant.

"You discover that you have what is called the embryonic stem cell; that is the beginning of cells. But the one we are talking about here is the homeopathic stem cells, which are those cells that are blood forming organs; the very primitive part of it has the ability to reproduce itself and produce other blood cells. When we move those cells from a person that is normal to a person that has a problem, we first of all destroy the bone marrow of the patient and then move those cells that are primitive from the donor into the patient to take over the production of cells. That process is what we call transplantation. We do this because the primitive cells have the ability to produce new blood cells," Dr Bazuaye added.

Matthew's confinement, Dr Bazuaye said, was the normal requirement to protect him from picking disease easily. "Where he is, there is a machine that sucks in air, cleans it up and recycles same because that type of air is pure. The light has to be on 24hours and nobody is allowed to go in there. He will be there until the cells are high enough that can enable him regain his immunity, which will help him fight off diseases. He is eating, but his meals are selected. He can't eat all sorts of food for now. We wear masks and are highly sterile before going in to attend to him to avoid giving him infections. His stroke would be managed. He will be requiring the services of a neurological physiotherapist, who would take through in that aspect," the expert said.

Dr Bazuaye had hinted in a seminar organized by Sickle Cell Centre and Sickle Cell Club in Benin City that UBTH was set to bring relief to sickle cell patients through bone marrow transplant. He had equally noted that the cost of the treatment could be subsidized to the tune of N2 million if philanthropists, internal donor agencies and government contribute towards it. Not many gave him any chance then, but he believed in himself even as he used the occasion to harp on the need to train more staff for stem cell transplantation. He had urged donors to donate to save lives as it is done in developed countries. "Such practice has no side effect," he added as he listed the criteria for selection to include age, stage of disease and velocity of blood flow from the brain.

Chairman of the occasion, Prof. Gregory Akenzua, and the Chairman of the Sickle Cell Club, Dr Dominic Osaghae, had applauded Dr Bazuaye, in their separate remarks. They both noted that the disorder is associated with the black race, but a lot can be done to alleviate the suffering of patients even as they called on donors and the government to the fight against the pandemic. The Sickle Cell Board Chairman, Dr (Mrs) Oshette Ohenhen, had also expressed her displeasure at parents and guardians, who, she said, prevent their children from going through blood transfusions over religious beliefs. Matthew: The Miracle Boy Set to Begin Life

It all started like a huge joke on September 28. Before then, he had been at a special ward at the Stem Cell Centre at the University of Benin Teaching Hospital (UBTH) without understanding his new environment and what fate had in store for him. Because of his afflictions, he became, as it were, the human 'guinea pig' needed to test a newly acquired expertise in stem cell transplant in Nigeria. It was indeed, a novel medical practice in Nigeria as nobody believed it was possible in this clime.

Matthew Ndik, the 'medical miracle boy' as he is now known, became the first to have gone through a successful stem cell transplant in Nigeria. The medical team at UBTH, who had earlier trained at the Bassel Teaching Hospital in Switzerland, performed the wonder. His recovery rate appears to have confounded even the experts that played host to him in the special airtight, lonely ward at the specialized centre.

Although he has been discharged officially, he is yet to leave the hospital formally. Matthew would have been able to go home at about day 60, according to the coordinator of the transplant, Dr Nosa Bazuaye, but because of the effects of the stroke he had, he had to be kept in 'protective custody' as he needs further observation. "We are keeping him because we feel that the patient still needs physiotherapy. Remember I told you that before the transplant, he had severe disease and a full stroke that affected his upper right arm and lower ribs. We had to give him a physiotherapist, who engages him daily. But clinically, he is fully recovered. He is okay," Dr Bazuaye explained.

Matthew's genotype has since changed from SS to AA as further medical proof of his stable condition. According to Dr Bazuaye, it changed since the 12th day after the transplant. His blood parameters are also said to be okay. The experts say that usually, sickle cell patients have stable haemoglobin levels with which they perform, and Matthew had a 20 per cent stable PCV before the transplant was done.

But since the transplant, the last PCV done to ascertain the level of his haemoglobin was amazing. "We did it on day 70 and it was 38 per cent; that is the pass level for most patients that are AA. His white blood cell count and other blood parameters are within normal. So genetically, with respect to the PCV we have done, he has already been cured and is also recuperating fine. He can now walk around with the help of the physiotherapist, which he does every day, in spite of the stroke," Bazuaye confirmed.

Matthew is currently eating well, without any intravenous line. He is only on some tablets for immunosuppression. The drugs are given to him to control his immunity so that the new cells in his body can have the power to overtake his former cells. Camorrism, which determines the percentage of immunity in the patient, was also done on day 70, and was discovered to have grown to about 70 per cent. The implication is that the donor cells have succeeded in taking over 70 per cent of Matthew's old cells, but the doctors say they will continue with the drugs until the new cells become 100 per cent. At that point, the drugs would be pulled out finally.

"So we expect that having discharged him officially, physiotherapy will continue till day 100, which is a special day to us. This is because any patient that will die due to transplant related issues usually dies within the first 100 days. The World Health Organization (WHO) usually waits for 100 days after a patient's survival. After that day, we can now send an official letter to WHO that we had a transplant and thereafter Nigeria will included officially in the list of countries that have successfully carried out a stem cell transplant. And we will have a press conference after which we will allow Matthew to go home. So, generally, I would say that he has done very well; his condition is very stable and everything is going on normally," Dr Bazuaye revealed.

The doctor termed the phenomenal rebirth of Matthew the expected pattern of recovery of patients after transplants and attributed it to the fact that he had no adverse reaction after the transplant. This was, in the words of the medical team coordinator, "because his brother, Emmanuel, who is 17 years of age, is genetically related, we didn't have any reaction and so he has followed the usual pattern that we expect after transplants. It was a normal response, although there are some that may deviate from this pattern, which may arise because of one or two problems. But usually, 40 to 60 days after transplant, the patient would go home once the cells are enough to boost the immunity."

However, in spite of the success recorded in Matthew's case, Dr Bazuaye appears not to be happy with the way the Federal Government is treating the whole issue. He said that the hospital would have done more transplants by now, especially as there were already three patients typed, but for the cold acceptance and non-assumption of responsibility by the Federal Government. "We have had some other patients but we are a little bit worried. Presently, we have three patients already typed. But as I mentioned the last time, the challenges before us are enormous. We just barely survived using the very minimal resource available to us. I also told you that we expected the Federal Government to assume responsibility by making this place an international centre. But up till now, I don't think the response we are getting from the government is encouraging. "I am shocked that since after this feat, I have not heard any statement from either the Minister or the Presidency. Even the host government of Edo and also Cross Rivers State where Matthew hails from are yet to identify with the centre and Matthew. If things continue in this way, we may not be able to embark on another transplant soon, except we improve on the facilities on ground. Remember I told you we only have facilities to do one transplant at a time, but it shouldn't be so in a country of about 150 million people. India, for example, has up to 15 transplant centres. We are talking of only one and nobody is interested in it. So as I said, response from both the federal and states is not encouraging," Dr Bazuaye fumed.

But, how has Matthew been able to cope with in this strange neighbourhood with his new neighbours? The Chief Nursing Officer and Ward Manager, Haematoma/Oncology Stem Cell Centre, Mrs Felicia Akaba, says Matthew has really been wonderful and is doing very well, and "we are all happy about it." She says that Matthew's case has been very interesting; interesting because, according to her, the boy has not been problematic as many people would have expected a boy of his age to behave. "He is a very good boy in spite of his condition and I am sure God has a purpose for saving his life. He came paralysed on one hand and leg but because of the treatment and physiotherapy intervention, he can now act like a normal human being, trying to walk around now.

"And because of the rapport we share with the child, you can see that the child is trying to talk now because the stroke also affected his speech. He was not talking by the time they brought him here. And by the time he gets better, we will invite speech therapist to work on him and help him out. We are trying to work on him all round not only to change his genotype from SS to AA. And I see him going back to school in a very short while. His recovery has been amazing, I must confess. Because Matthew is a very good child and cooperative too, we are happy with him. Initially, we were scared because he is a child; you know children with their usual wahala. They would refuse drugs and all that. But surprisingly, he has proved to be different and that makes our work easy," Akaba quipped.

Akaba is not alone in her assessment of Matthew. His father, Hyacinth Ndik, who spoke to this reporter in tears when he could not hold back his joy said, "let me start by attributing the 'miracle' that happened to God first and to keep praying that the Almighty God will continue to remember the stem cell experts in UBTH. There is no way I will be able to thank them enough because they came at the time we were confused and all hope was lost.

"Ordinarily I never expected that the feat from the medical team would turn out to be a success story; nobody actually was sure of what was going on and what would eventually happen but I had and still have faith in God. The success story today is also partly because I built my confidence in God. I would say that I am a bit lucky because before the operation was done I had a kind of lecture and the risk factor was calculated even as we prayed fervently, believing that God would perfect everything, and He did prove Himself to us. When we remember that we lost one of our children before now because of a similar problem, we became scared. Though, that one died as a result of ignorance," Ndik said, adding that from the point of medicine, the experts were confident but they had their fears simply because it had never happened before and there was no reference at least, not in this part of the world.

Dr Alfred Ogbemudia, Deputy Chief Medical Director (DCMD) and chairman, Medical Advisory Committee, as well as an orthopaedic surgeon at UBTH says, "We are happy at the turn of events because it will become the new motivating factor and it is a welcome development.

"The hospital must use this opportunity to commend the stem cell team for several reasons. They went the extra mile in the case of Matthew with the available resource that we were able to provide. So, we must give credit to the experts who made extra effort to make sure everything was okay; though this particular case has also exposed a myriad of challenges which we have to tackle if we are to remain focused," the DCMD remarked.

The transplant of stem cells, which are usually derived from the bone marrow, is a medical procedure in the fields of haematology and oncology, most often performed for people with diseases of the blood, bone marrow or certain cancers. It is not restricted to children alone. For sickle cell, for example, Dr Bazuaye said, "We are doing 15 years and below when we know that the risk is less. But currently, there is therapy for sickle cell patients who are 30 to 40 years and above. But we have decided to kick start in phases. Apart from sickle cell, the stem cell transplant is meant for so many other diseases like blood cancer (leukaemia and others). It is also meant for those who have bone marrow failure, whose bone marrows are no longer able to produce cells either as a result of viral infections or known malignant disorders."

The specialists, like Matthew's father observed, were the only ones sure of what to expect during Matthew's ordeal. At the beginning, it was a daunting challenge because most people felt that it was impossible. But by Wednesday, September 28, Matthew had his cells replaced with those free from the sickle cell disease.

 

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