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 4th
presentation at international platform, and the 3rd 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. 1st
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 2nd
pregnancy, I had been off hydroxyurea, transfused every 2 weeks, went in to
severe sickle crisis during 2nd trimester and barely made it to my
37th 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.
Shifu, what a truly heartening and amazing journey- no doubt you are an example...a brave young woman. May Almighty Allah bless you & your family with many years of happiness and togetherness.
ReplyDeletei am so lucky to have wonderful friends luke to support and encourage me all the way.. ❤ thank you so much!!1
DeleteSo proud of you, thankful to call you my friend, and thankful beyond measure for those two precious lives you were and are courageous enough to carry, deliver, nurture and raise. Life would not be the same without Eelan and Eiliyah! God Bless! -Beckie
ReplyDeleteThank you so much Beckie.. i cant thank u enough for the wonderful support u give me to keep me focused on my missions... love you!!!
DeleteI aswell am a sickler. Been wanting to have a baby for so long but terribly afraid of going off HU due to the adverse effects it will have on me,neither do I wish to knowingly cause harm to my unborn child. I am in such a dilemma :-(
ReplyDeleteCathy Oyamo, please feel free to mail me your questions regarding my pregnancy to shifneez@gmail.com .
Deletehopefully i can help you find some answers for your dilemma. stay positive warrior!!
Am Alex from USA,
ReplyDeleteThere is a cure for Sickle Cell Disease,
My Son once had sickle cell Disease he was always sick every month, and his growth was also very slow. he was very intelligent in school and all his teachers loves him for that. when ever he is sick, I feel the whole world is falling on me.
I got the permanent cure from Dr Alegbe, for my son. He took the medication for good one month, and from then still now he does not get any fever again. and his body system is strong. he does not get sick easily. Dr Steve has really made me happy in life again. and I promise to tell the whole world about him. I never believed my Son can live long to this extent, but now his is living fine and healthy like the other kids. Now I believed Sickle cell Disease can be cured. any one with such issues can contact the Doctor on dralegbe@gmail.com or Whats-app him on +1(518)-675-6082
THERE IS A CURE TO SICKLE CELL ANEMIA, AM A LIVING TESTIMONY.
ReplyDeleteI write to you with great joy in my heart how Dr Alegbe John turned my life around. I was born a sickle cell patient through the gene- type of my parents and became a carrier which led to immense crises all through my growing up years. This particular ailment was called rheumatism, the pain of the bone which I was told was caused by difficult circulation of blood in the vein axis.
Growing up was like hell because apart from the pain and the fear of it, I also lived in bondage for years before Dr Alegbe intervention.
I was restricted from doing what my mates could do, there was a lot of don’t touch, don’t eat, don’t go, don’t wear by the doctor and I lived all through this period on drugs. I was made to know that without this pill, my life will would finally come to an end. It was total bondage.
During this period of pain, I would cry, shout, throw myself to the ground, destroy things I could find around me just because of restlessness the pain caused. My Dad got the contact of Dr Alegbe from the internet and he emailed him told him about me and made purchase from his product. I too the medication for one month and he always call to know how am feeling, that was how i was cured completely. any one can reach him On his gmail address at dralegbe@gmail.com
I stopped taking my drugs because Dr Alegbe John has made me completely cured, I no longer feel pain neither do I remember how it feels.
Hey Gina, I saw your comment about Dr. Onokun medication concerning Fibroid sometime ago and you were right, I tried it and it worked like magic for me. It was like hell living with FIBROID all this years until now, no more pains, bleeding and no miscarriage and I would've come with my testimony before now but I have to wait for a couple of months to see if it will regrow again but there's still no sign of fibroid, I also went to the hospital for test and still i was tested negative. All thanks to Dr. onokun and to you too Gina. And for anyone out there who wish to try can reach the doctor through Email: Dronokunherbalcure@gmail.com or WhatsApp +2349064844957
ReplyDelete