The Beauty Remains
Diagnosis: Thalassemia
By Shaan's Mother
I sit here with tear filled eyes. I'm not sure why I wanted to write this today, but having read the stories on AHC, it brought some sort
of comfort knowing that I'm not in this alone. I thought I would share my story for those who have or are going through what I'm going
through right now.
I still remember the day the phone rang and the genetic counselor gave me news that would turn my world upside down. My worst fear had
come true...my precious baby had a fatal blood disorder. Prior to pregnancy, a genetic counselor had told us that we had a 25% chance of
having a baby affected with thalassemia. At the time, it was easy for us to say that we would
opt for an abortion because we did not want our child to endure the pain and suffering he would have to endure in the short life that he was
expected to live. But having to actually make such a decision was a whole different story. There are no words that can explain how painful
and agonizing it is to choose to end your baby's life.
We remember frantically calling doctors and specialists hoping to hear that it was a mistake or that the prognosis can be good. With each
conversation, my heart sunk deeper and deeper. The worst part is that after consulting with a geneticist at a world-renowned facility, we
found out that testing could have been done prior to my becoming pregnant by a method known as pre genetic implantation diagnosis (PGD). It
hurt so much to find this out after I became pregnant. I remember becoming very angry at my previous health provider for not informing us
about such a test. We could have spared our precious baby's life and would not have to go through the devastation that we are going through
right now.
I was also angry with God because I felt like he tested me over and over again. It was my very first pregnancy and I was excited, but the
first few months were really high risk. I was relieved that I passed a critical stage. Then the amnio put me at risk, but I seemed to survive
that. My baby kicked me for the first time on mother's day. I will never forget that special day. After all this, my baby's life had to end.
We had a week to decide because after 24 weeks the doctors cannot terminate the pregnancy. I know the decision we made was best for our
baby and for us, as we as parents would not have been able to see our child suffer. Nevertheless, I wish my baby was healthy and that we were
not put in such a situation.
I don't know how I got through the week leading to the termination. My heart sank with each passing moment. I died inside each time I felt
my baby move. I remember wanting God to take this decision out of my hands. But somehow I managed. We chose to induce labor (even though he
was not alive at birth. I still remember the day my precious baby was born and I held him in my arms. I wanted to hold him in my arms forever
and ever. I don't know how I handed him over to the nurse, never to see him again.
I remember being so sad and full of despair and anger (towards God and my doctors.) Thousands of questions ran through my mind many of
which started with Why me God, Why me? I started to look for reasons as to why this happened and started to blame myself and others for what
happened. I felt like I should have done more research and I would have found out about PGD or I should have gone to a 'brand name' facility.
I questioned my decision to terminate and occasionally still do. I wanted answers to the millions of questions I had even though I knew there
weren't any. I wanted to die so that I could be with my child and hold him in my arms forever and never let him go. I couldn't think about
anything but my baby. Nothing else mattered. I was utterly despaired and didn't know if this feeling of despair was ever going to stop.
If it wasn't for my family and friends, I don't know what would have happened. I am grateful for my family and friends for being there
with me. And a special thanks to the L&D staff at LPCH for their kindness and caring through the difficult process. With the help of my
family and friends and my counselor I started to function a little more and I slowly continue to do so as time goes by. Even though I will
never forget this tragedy and will always long for my baby, I hope that with time I will be able to accept things the way they are and look
forward to a better future.
There are still days when I start crying all of a sudden and there are days when I think about my baby and am able to control my emotions.
I remember hating the words "It will take time or that time will heal your pain" But in some ways, it is true. To those who have gone through
losing a much wanted child and those who are going through this now, I offer my condolences and hope that time will help heal the wounds.
It's been three months and my due date is almost coming up. It's been very difficult because I feel like my precious baby should be here.
I wish he was alive and healthy and here with us where we could love and care for him. I know that he will always be in my heart and I find
some comfort knowing that until we reunite, he is being well taken care of by my grandfathers and uncle in heaven.
In the little time he had in this world, even if it was in my womb, our little boy has touched our lives in a way that words can't describe.
This tragedy has forever changed my perspective on life. Cherish the moments you have, especially with your loved ones.
To all you parents, no matter what, the child you lost will always be your child and you will always be his/her parents. Nobody can take
that away from you. Here is a quote my sister sent me... I hope it gives you hope as it does me.
"The pain passes, but the beauty remains." ---Renoir.
To my precious baby I can't wait till we meet again. Mommy and Daddy will always love you.
Heartbroken mother of Shaan