- A family’s testimonial of victory over sickle cell … one year after Bone Marrow Transplant
- Neither parent knew they had sickle cell trait
- First Transplant at Australian Hospital
- Smooth-sailing BMT – No spurious side effects experienced
As related by mum, Agnes Nsofwa RN MSN, BBA, Co-Founder, Australia Sickle Cell Association (ASCA) Inc
On 21st February 2019, my husband and I looked on as our daughter was getting donated bone marrow from her elder sister. She was having a transplant to cure Sickle Cell Disease SS. This was the first ever transplant at the Royal Children’s Hospital to cure SCD SS, as a matter of fact it was the first successful transplant in Australia to cure this type of Sickle Cell Disease.
After 11 years of our little’s girl’s suffering with numerous hospital admissions, blood tests, missing school and work absences for mum, dad and brothers and sisters, everything was coming to a head. From our initial doubts and fears as a family to let her undertake such a risky procedure’ and after prayers, crying, frustrations and angst and lots more, our little girl was going to take a chance to kick away SCD. Forever.
This experience started with us being admitted in hospital on 29th January 2019. The day was going to be the start of a life-changing experience. I have never been so stressed nor so scared in my life. Every second for me seemed like an eternity. I watched my daughter like an egg about to hatch every second while in hospital. To some extent, I still do till this day!
Our daughter never had any serious side effects. She ate throughout the whole process, no mouth sores, no gut irritation, no vomiting. Even the doctors where amazed. Everyone was surprised just how smooth her treatment went. At times she was mistaken for a visitor and not a patient! God gave our little girl a whole new life.
For almost 40 days we were in The Royal Children’s Hospital. The nurses and doctors became our family. The ward became our home. The hospital corridors and laundry rooms became part of our home. We prayed every day and night, playing gospel music in our room almost 24 hours.
Out Victorious
After those 40 days, we had our testimony to tell – our daughter emerged victorious. She never had any serious side effects. She ate throughout the whole process, no mouth sores, no gut irritation, no vomiting. Even the doctors where amazed. Everyone was surprised just how smooth her treatment went. At times she was mistaken for a visitor and not a patient! God gave our little girl a whole new life.
From having red cell exchange treatment every 3 to 4 weeks for years and numerous blood tests/check-ups and hospital admissions, today we stand tall and declare, we #ConqueredSCD.
How It all Started
I sat down and looked back where we have come from and where we are in terms of dealing with this life-threatening disease affecting millions of people worldwide. It is estimated that over 250 million people have the Sickle Cell Trait (SCT) and each year over 300 000 babies are born with severe forms of SCD worldwide.
However, no follow-up was done on my husband to determine if he also had the trait to prepare us whether or not our daughter was potentially going to have SCD. I was treated with trial and error medications at one point making me jaundiced and I had symptoms similar to a sickle cell crisis.
This all started around June/July 2008 when I was expecting our fourth daughter. I was home alone one evening when all of a sudden, I felt different. I didn’t know what it was, but I felt sick and when I took my temperature, I found I had a fever. I took Panadol and after a few hours the fever went away, and I was OK. The next evening around the same time, I felt the same way, so I did the same thing – took Panadol and rested. After an hour or two, I was OK. On the third day, again around the same time, with similar symptoms, I complained to my husband. He encouraged me to go to hospital, but I told him I would wait for him to come the following day. When he arrived, he took me to the hospital.
I ended up being hospitalised for eight weeks with an unknown ailment. For two weeks I was in isolation at the Intensive Care Unit. During the routine blood tests, the doctor picked out that I had the Sickle Cell Trait (SCT). However, no follow-up was done on my husband to determine if he also had the trait to prepare us whether or not our daughter was potentially going to have SCD. I was treated with trial and error medications at one point making me jaundiced and I had symptoms similar to a sickle cell crisis. I was unable to walk, and my HB kept dropping. At its lowest, it was 67%.
Our daughter was diagnosed with sickle cell anaemia at 14 months old. Had we known that she could have the disease at birth, the complications she later had to endure would have been avoided.
For the first five years after her diagnosis, we did not tell a lot of people. We only told our close family members who we encouraged to get tested and a few friends who had children similarly affected by SCD.
The Grieving Process
Our grieving process started with the denial that maybe there had been a misdiagnosis, and that maybe after a few weeks, the doctors will tell us that it was a mistake after all. I had these thoughts in my head for a very long time.
Even when she needed blood transfusion, I attributed it not to SCD, but to something else. Those were the hard years. Our lives changed from never ever visiting a hospital for any of our children to having to go to hospital almost every two weeks. Giving her medications was a struggle. She would cry uncontrollably because it was bitter, and I would cry because she was crying. I spent hours and hours on the internet trying to find information about a cure for SCD. I became obsessed with every bit of sickle cell news.
From Accounting to Nursing
During all this period, I was working part time as a Banker and studying part time. I was at University studying for a bachelor’s degree in Accounting. But in my last semester of study I knew what I wanted to do post finishing my degree. I knew that I didn’t want to work as an accountant. I knew I wanted to do nursing to better understand my daughter’s predicament. Three years after her diagnosis, I enrolled in a Master of Nursing degree at the University of Sydney, which was offering a two-year master’s program if one already had a degree in any field.
Two years passed swiftly, and before I knew it, I was graduating from the University of Sydney. During my studies, every time we had an opportunity to pick any research topic, I always picked SCD or related subjects.
After my graduation in 2014 and moving to a new town, I made sure I read a news article about sickle cell every day. Our daughter was the only child among four to have a condition that neither I nor my husband had any inkling of. When the doctors told us that she had SCD, we panicked and started researching what it was. Genetic counselling didn’t achieve much for me.
Today, we are thankful to medical science for liberating our daughter – alongside the entire family – from the stranglehold of SCD. I hope more families dealing with this illness around the world get access to this awesome treatment for their kids too.
Follow Agnes on LinkedIn at https://www.linkedin.com/in/aggie-n-72b88a6/ and twitter @AggieMN