Diagnosis: Fryns syndrome
By Mom & Dad
The Beginning: They say a soul enters the body through the womb of the mother; that is his first home. I knew the moment I had our-little-one in me. Initially a surprise, we considered it to be a ‘welcome accident’ that was followed by several exciting moments. Of all the thoughts, the thought of K becoming a big brother topped the list! Our families were excited too but we waited to share the news with our friends and extended family. We thought it best to wait until closer to the end of first trimester. The first trimester had its own set of challenges thanks to the morning sickness occurring almost all day, every day. I kept hoping that things were okay and each moment would be a prayer that our-little-one was growing well.
It was during our ultrasound at week 13 that the results showed anomalies raising preliminary concerns among the doctors. This led to additional tests to investigate in more detail including a series of consultations from multiple practitioners. Our hope was that once the results were ‘normal’ we could announce our pregnancy to others.
Who knew that ‘normal’ in the medical world, under such circumstances, only worsened the diagnosis! Each time we got the results, the overall opinion, whilst ‘normal’, would also indicate additional irregularities. This was a traumatic process, to say the least; there were times of denial, of helplessness, of going all out to ensure our-little-one was okay, of thinking about what we were going to do. Despite all this, we experienced some precious moments to last us a lifetime – relishing those cravings, feeling initial kicks, stimuli to music and above all, to dream of moments for a future as parents of two children.
The Loss: It was after the results from the tests at week 19 that the anomalies worsened more-so and the overall diagnosis pointed towards Fryns syndrome that occurs in every 0.7 of 10,000 babies. Our options were explained to us. If we were to carry to full term, we were not guaranteed that the baby would survive. Further, at birth our-little-one would have to undergo several surgeries coupled with permanent handicaps.
As much as this devastated us, we made the rational decision to terminate the pregnancy. The little chance we thought our-little-one could have to live through this needed more than a miracle. The decision was thus taken keeping in mind: (a) the grim life our-little-one would have to suffer through continuous life battles at birth; and (b) K’s well-being whose life we are responsible for as well and it couldn’t be turned upside down.
Our-little-one was with us for 20 weeks. Although blurred by much agony, I recall the final moments as making it peaceful and the only piece worth remembering was the highest form of respect and compassion with which the entire medical team at the Washington Hospital Center treated our-little-one. Yes there were tears shed, we poured our hearts out; a part of us that day left to be with our-little-one. We did all we could to honor our-little-one – the farewell, the prayers and the keepsake.
Yet there is tremendous guilt and pain despite knowing that it was the right decision. I know deep down that I was chosen to be the mother to take this harsh step in the best interest of our-little-one. I can’t stop the world from judging me for the decision we made or the way in which they think I should move on or, for that matter, if they expect that we provide any explanation either. There are times when I feel strong enough to face them and feel like I am getting through this and then there are times when I feel extremely awkward to pretend that everything is okay.
Right now, as much as I know it is true in many ways, I dislike when people say “all for the best” or that “time will heal it all”.
The Grief: We may never know why this happened but I have to believe there is a reason behind it. Waves of emotions crashing through our head have left me questioning a lot of things. At the same time, as we begin to look (and feel) more faithfully, I see that this has also taught us many things in the past few months – about science, about life, about love and about togetherness.
This experience has surely changed my perspective on life – that I have come to appreciate the silence in God that keeps conveying how precious life truly is; that I have a different understanding of the term ‘unconditional love’; that our-little-one will always have a place in this family; that while pain may diminish over time, its preciousness always remains.
As the parents grieving this heart-wrenching loss – of life and of a dream – we feel precious enough when we see the kind of support that we have received in this process: (a) The entire medical team tending to us without whom we wouldn’t be as peaceful as we are right now; (b) Our family that is a pillar of strength and love for us – their prayers, thoughts and vibes could be felt at each moment and we are indeed blessed to be surrounded by such care and comfort.
Moving On: As we learn to move from here on, we are truly in gratitude for the endless love and blessings received from near and dear ones. They are the assurance that our-little-one has left us with respect, love and dignity; and this precious soul is indeed blessed for a better life and being.
And to our-little-one:
We truly hope that you felt nothing but
our warmth and safety;
that we took away your pain
and we were the chosen one
to be blessed by your preciousness.
Our-little-one – you are not alone;
a part of us is with you.
December 05, 2012.