Reproductive Health and Sickle Cell Disease by Ssebandeke Ashiraf

It’s my pleasure to introduce my 2^nd guest writer for this blog, my new friend, Warrior Ssebandeke Ashiraf, who joined sickle cell advocacy at the young age of 14 years after realizing the ignorance about sickle cell in his community. In 2012, after his 2^nd year in university, he joined sickle cell association of Uganda that was driven by his passion to learn and understand sickle cell better. With knowledge and better understanding, he managed to joined Sickle Cell Warrior USA as a Uganda Team Leader.

Ashiraf graduated in Bachelor of information and office management at Marakere University Bussiness School in 2013. He is the country reresntative and Kampala Correspondant for Africa Sickle Cell News and World report Nigeria. He is currently working as public Relations Officer of Sickle Cell Network Uganda (SCNU) which he co-founded in 2013.

SCNU is a sickle cell advocacy organization with an aim in improving the quality of lives of Sickle Cell warriors. His bigger vision is to realise a sickle cell free generation. Ashiraf also advocates for Renal Medullary Carcinoma, a rare type of Kidney Cancer that effects majorly sickle cell traits.

Ashiraf is a two-time nominee of WEGO Health Activist of the Year in 2013 and 2014. This year, he was honored the International Sickle Cell Advocate of the Year 2015 by SickleCell101.org to recognize his efforts into raising sickle cell awareness in his community.

Conquering Dreams

As I get myself ready for the 2nd MEGMA Conference on Thalassaemia and other Haemoglobinopathhies, in Amman, Jordan from 11-12th November 2016, I can't stop thinking how lucky I am for the wonderful and generous friends and family I have. Thank you from the bottom of my heart for being a part of my journey and making it possible for me to participate in this conference. 

What I am most excited about my conquering dream episodes each year that you have made possible is that I get to share my perspective on how medical professional can help empower patients living with sickle cell and other haemoglobinopathies around the world. This is my 4^th presentation at international platform, and the 3^rd year that I will be sharing My personal journey living with sickle cell and hydroxyurea therapy during pregnancy and lactation at the scientific programs.

For those who might ask what is Hydroxyurea (HU), it is a drug that is known to reduce the frequency of sickle crisis episodes and hospitalizations in SCD patients. However, it is believed that if HU is used during pregnancy or if the patient becomes pregnant while taking this drug, the patient should be told of the potential harm to the fetus as animal testing shows that the drug crosses to the placenta and causes embryo toxicity, fetal malformations, growth retardation. Therefore, patients are advised to avoid becoming pregnant while taking HU, or terminating the pregnancy due to its described potential side effects on baby.

This leaves pregnant sickle women with a real dilemma: Take a drug with unknown effects on fetal development or give up a helpful, necessary medication. This I know, because I have been through this dilemma several times since 2004 until 2009. I have been discouraged from ever having a baby, I have been told I should focus on maintaining my health rather than raising a family. My husband had been told that he must be crazy to have kids with me. I have been advised to terminate each of my pregnancy because I conceived on HU. 

Past 11 years, I have had 3 pregnancies each experience different regarding HU therapy. 1^st pregnancy, I had a miscarriage and sever sickle crisis, because I had been taken off hydroxyurea and I didn’t know that transfusion was an option for me. 

My 2^nd pregnancy, I had been off hydroxyurea, transfused every 2 weeks, went in to severe sickle crisis during 2^nd trimester and barely made it to my 37^th week, where he was delivered early. Alhamdhullilah, our handsome lil’ hero Eelaan, gave me a whole new strength to make me realise that anything is possible. I felt like my dream had come true, and no one is going to stop me from dreaming the impossible. The moment he was born our lives changed completely.

Having a child of my own to call me mom was a dream I thought was beyond my capability. And I realized I had more to do and dream a little bigger. My family and friends thought I am crazy to even think for a second baby of all the things that I had gone through, but I had long realized that we never know our possibilities until we try.

I had the courage to go through my last pregnancy while taking HU. Although I was nervous of the unknown, about the effect of Hydroxyurea on baby’s growth, or any abnormality physically and intellectually, I was stressed thinking what if the scans doesn’t detect. I kept mentally preparing myself for the worst. And I was ready to accept whatever may be the outcome of this pregnancy. However anxious I was about not knowing what it might do to baby in the long run, I always knew I had made the best decision to continue with the pregnancy and Hydroxyurea therapy.

I had amazing, healthy and active 40 weeks before welcoming her into our hands.  I kept a close watch on her, at first it felt like such an achievement when she crosses every milestone and she’s establishing them quick. She’s active and a very happy girl. Just like any other 2 yr old would be. My lil’ warrior Eiliyah, Masha Allah, the best decision ever. I believe that my daughter is the hope everyone like me

 is looking for.

Deciding to breastfeed the baby was a hard choice, because I had to go back to HU, and everywhere I read it states that Hydroxyurea is excreted to milk and has the potential of serious adverse reactions and may cause harm to baby. When Eelaan was born, I chose to stop HU and feed him, biggest mistake ever. I went into severe crisis that put me in ICU multiple times and he was not even 2 yrs at that time. I had lost my spleen, was iron overloaded from all the transfusions I had, was diagnosed with avascular necrosis of my right hip, and I had no choice but to go back on HU.

With this experience, I decided I would continue HU even after my lil’ warrior Eiliyah was born. I have taken a huge risk of having a baby while taking Hydroxyurea and I saw no point in stopping the med to breastfeed the baby. I struggle with my doctors to continue Hydroxyurea while breast and bottle-feeding at the same time. So far I have not noticed any negative side effect of HU on her, Alhamdulillah!

Many women are in fear, when it comes to pregnancy and raising a family, since we are reminded of how risky it is to become a mother. In my opinion, doctors who are unaware that HU can improve the health of sickle cell patients during pregnancy is taking a huge risk by stopping it since it would mean the recurrence of sickle complications that could be life threatening for mother and baby.

It’s important that doctors find it in themselves to empower patients and encourage them to be the best they can be. That is why this journey of conquering dreams is so important to me. I hope the story of my personal journey can open the possibility for others like me to have their dreams come true.