A glimmer of hope after SCD cure for young patient

“This brought serious challenges in his upbringing. He was frequently hospitalised mostly for blood transfusion,” she narrates.

“This had consequences on the family’s finances because most of what was earned had to be directed to cover medical bills.”

Going through sleepless nights in the last 11 years, mostly crying and praying to God that her son is healed.

Furthermore, she says some relatives and friends who supported the family through blood donations at the beginning, slowly started to distance themselves away from the family even by neglecting calls.

“It seems they were tired of regular blood donations to save our ailing son. Worse enough, my husband and I were prohibited from donating since I’d had several surgeries and my husband is asthmatic,” she says.

According to her, there was a time the family was forced to look for an outsider who could donate blood for the child on payment.

She says not only the move adversely affected the family socially and economically, but their careers suffered as a result of the inability to focus on growing them.

Ms Philipo says she was forced to suspend studies at the College of Business Education (CBE) in Dar es Salaam in order to care for her child.

“There wasn’t a time I was able to be far from him; it was a fulltime job.” she says.

As the minister of Health Ummy Mwalimu was tabling the Sh1.235 trillion 2023/24 fiscal year budget on May 12, 2023, Ms Nediana Philipo and her children; Elisha and Ester were among recognised guests.

They were recognised alongside Dr Stella Malangahe, who is the assistant director at the department of Haematology and Oncology at the BMH in Dodoma.

Their recognition came following the successful bone marrow transplant conducted on Elisha John who spent 11 years in fear, pain, frustration and despair.

The transplant was successfully conducted after Ester John, 5, managed to donate stem cells that were ultimately transplanted to her ailing brother.

The transplant was possible under the leadership of Dr Malangahe and a team of experts from the BMH.

“I was so excited to be publicly introduced in Parliament. It was my first time to attend the House and I was overwhelmed,” she says during an exclusive interview.

Ms Philipo, a resident of Area D in the country’s administrative Capital, Dodoma says the introduction has added weight to the fight against sickle cell disease.

“Parents with children like Elisha have increased awareness on the disease and it is now treated locally,” she says.

Admission at BMH

Ms Philipo says her husband was transferred to Dodoma during the government’s relocation to the capital leaving the rest of the family in Dar es Salaam.

However, life got harder as friends and relatives moved far from the family, forcing her to follow her husband to Dodoma.

“One day, Elisha fell sick while in Dodoma. We took him to a nearby health centre where he was well attended and treated,” she says.

“The doctor then introduced us to Dr Stella Malangahe who deals with sickle cell at the BMH,” she says.

After several visits Dr Malangahe broke the good news about commencement of bone marrow transplants at the facility.

Furthermore, she says following her son’s health deterioration, Dr Malangahe proposed Elisha to be listed for a bone marrow transplant.

 “However, we were told that the treatment will only be possible in case one of Elisha’s siblings genetically matched with him. The said person was the one who could donate stem cells for transplanting purposes,” she says.

Panic, fear, hope

This news prompted panic and fear in the family even though everybody wanted Elisha grow health like other children.

After a heated debate that involved spiritual leaders, Elisha and his siblings, another brother and Ester were taken for tests to find a match.

“On December 22, last year, Dr Malangahe revealed that Elisha’s was a matche to his sister, Ester,” she narrates.

“The news re-ignited panic and fear. We were of the view that Ester was too young for such a responsibility,” she shares, adding that her husband had to seek the hospital’s clarification.

She says after receiving clarification and advice from a Pastor, the family decided to proceed with the treatment process.

The two kids were separately admitted for 10 days before the actual transplant.

However, she says that after the procedure on Elisha was done, delayed bone marrow germination triggered another fear.

“Everything settled after a few months, ending all the pain, fear, despair and frustration. The family is now celebrating,” she says.

“His height has increased, hair has grown enough and weight has significantly increased,” she adds.

According to her, the family has conducted sickle cell tests verification in three different hospitals with results showing that the disease has been treated.

Why was a transplant necessary

Dr Malangahe says Elisha who was attending sickle cell clinic at the BMH had been admited for hydroxyurea medications that are administered for relief.

According to her, despite the use of relief medications, Elisha’s health kept deteriorating and he experienced serious pain and frequent anaemia.

“The child’s school attendance was adversely affected. He could attend only three months a year with the remaining other months spent in treatment,” says Dr Malangahe.

She said the parents had to be told about the decision to conduct a bone marrow transplant and were assured that the journey would be successful but not simple.

“They were given enough time to contemplate. We also informed them that studies have shown that bone marrow transplants are successful for children between four and 12 years as compared to other age groups,” she says.

She insisted that age was an important factor in getting the required bone marrow transplant results.

Requirements for a successful transplant

Apart from age group, Dr Malangahe says recognising a suitable donor is very important

“Ideally, this is what determines better results during the bone marrow transplant. There could be several biological siblings, but we usually look for someone closely relating to the patient’s genetics,” she says.

“This is because human bodies tend to reject things that are genetically different. For instance, pregnant women usually struggle in their early days of pregnancy because an embryo with different genetics has entered their bodies,” adds Dr Malangahe.

Transplanting preparations

Dr Malangahe says Elisha was admitted for the 10 days during which his bone marrow was drained through chemotherapy ready for bone marrow transplant.

Furthermore, she said at this stage patients become immunity free and utterly depend on hospital’s infrastructures to support their lives without causing infections.

“This is made possible because Intensive Care Units (ICU) are usually fitted with air conditioning, a clean floor, hand washing equipment and protective gear for visitors,” she says.

“During this period, a patient is provided with special food prepared under higher levels of hygiene. They are also prevented from taking certain foods like salads and fruits eaten without peeling,” she adds.

According to her, as Elisha was admitted, his younger sister Ester was also confined in a room for stem cell harvest.

Dr Malangahe said the harvest is determined by calculations made to establish the exact amount required without negatively affecting the recipient or donor’s health.

“This could be 150mls, 200mls, 250mls or 300mls. Harvests take one to two hours,” she says.

After stem cells are harvested, the donor is taken to normal wards where he/she is closely monitored before being discharged, according to her.

Bone marrow transplant

Dr Malangahe says a bone marrow transplant is conducted through normal blood transfusion, but the recipients’ body continues to manufacture white blood cells, red blood cells or the platelets which is responsible for blood clotting.

“At this stage Elisha was placed on antibiotics, antiviral and antifungal medications to prevent infections. Anti-pain medications were to enable the body to cope with the new material,” she says.

According to her, such medications are recommended for the next six months, during which the patient’s body was going through different stages of struggle and re-organisation.

“Not all sickle cell patients are supposed to undergo bone marrow transplant, however it is done to save the life of those whose health deteriorates despite using hydroxyurea medications,” she says.

Dr Malangahe, describes Sickle Cell Disease (SCD) as a blood disorder that a child is born with and it is passed down through the parent’s genes.

She says children with SCD make abnormal haemoglobin, which is the protein in red blood cells responsible for carrying oxygen to different parts of the body, noting that with SCD, body organs and tissues don’t get enough oxygen.

“This is because while healthy red blood cells with normal haemoglobin are round and move easily through blood vessels, when a child has SCD, the red blood cells are hard and sticky acquiring the shape of the letter C or a farm tool called a sickle,” she says.

“These damaged red blood cells (sickle cells) clump together and can’t move easily through the blood vessels. They get stuck in small blood vessels and block blood flow, therefore causing pain and damage to major organs,” adds Dr Malangahe.

Furthermore, she says unlike healthy cells, sickle cells die sooner and fewer healthy red blood cells cause anaemia.

According to her, sickle cells can also damage the spleen, noting that without a healthy spleen, children become susceptible to disease and infections.

She says blockages cause pain to most parts of the patient’s body leading to disgrace, concerns, abandonment, upset and struggles among family members.

According to her, persisting destruction could lead to kidney failure, stroke, vision loss, heart complications as well as lungs and liver failures.

Cost

Dr Malangahe says that at the BMH bone marrow transplant is conducted at between Sh55 million and Sh65 million per patient.

However, she says the amount is significantly low as compared to Sh80 million and Sh120 million charged in India.

“In developed countries like the US and Europe, the cost ranges between Sh200 million and Sh300 million per person,” she says.

Investment

She says Sh2.75 billion has been invested at the BMH for improvement of facilities upo receiving consultants’ advice.

“The advice includes constructing an ICU which is well-equipped. Preparation started in 2019 and was concluded in December 2022,” she says.

Regarding investment on human resources, she says the hospital has a team of 12 experts including two specialists, a general doctor and nurses including medical attendants and trained nurses.

Others according to her are support team members who range from lab technicians, pharmacists and blood experts.

It is important for the public to be equipped with accurate information about the treatment of SCD regardless of the price constraints because the government is working on the matter.

“Parents should continue taking their children to respective clinics to prevent destruction of internal organs that could adversely prevent bone marrow transplant process,” she said.

Ms Philipo calls on the public to better understand the cause of the disease, accurate treatment, struggles and internal organs that are a threat to a patient’s life and could lead to death.