A Voice for Shelby
Diagnosis: HLHS - No easy way out!
By Erin Greenough
Shelby Madison Greenough came into this world without a sound on August 24, 2000. She never opened her eyes, or took a breath, but she had a
voice. My voice.
It is a cruel injustice that any parent should be asked to choose between the life and death of their dying child. My husband and I learned all
to well the agony involved with such a barbaric request in August of 2000, when our second daughter, Shelby Madison was diagnosed via ultrasound
with Hypoplastic Left Heart Syndrome, a severe congenital heart defect.
Sitting in that ultrasound room, I felt the despair set in. My daughter was extremely sick, and there wasn't anything I could do to help her. I
believe now that there is no emotion more devastating to a parent than helplessness.
Each option we were given seemed more discouraging than the last. Unfortunately, although surgery was an option we were given, due to the
severity of her particular condition, the odds of her surviving long enough to begin the series of surgeries needed were dismal, at best. And the
reality was that the surgeries would not fix her heart, but prolong her life. We also knew that the chances of receiving an infant heart for
transplant were minuscule.
I realized in those first few minutes following her diagnosis that my daughter was going to die, the only question that remained was when.
We spent the very little time we were given considering our other two options. We could either continue to carry our daughter to term, and let
her pass naturally, or we could interrupt our pregnancy and deliver our daughter early. Carrying her to term would allow us more time with our
little girl, but it would also mean accepting that I could not intervene, that I would have to let her go. I knew in my heart that if she took a
breath, if she opened her eyes, it would be my instinct, as her mother, to save her. And I also knew that I could not subject her to a life of pain
simply because I was not strong enough to let her go. I knew that I was going to have to endure the death of my daughter, but I also knew that in
order to survive I would have to do it on my terms.
My husband and I made the painful decision to interrupt our pregnancy and deliver our beautiful girl to heaven early. Our daughter was born
silently at 3:48 am on August 24, 2000. She was born exactly four months earlier than her due date, which would have been Christmas Eve.
I've learned a lot in the years since we lost Shelby. I have been faced with so many misconceptions regarding the decision we made for our
daughter, and I have learned that I am unable to fight every battle. But I have also learned that I am the only voice that Shelby will ever have,
and I will always stand up for her life, and her undying memory.
So many people believe that the choice to end our pregnancy was an easy one to make, as if that choice meant that we loved her less because we
didn't carry her longer. The truth is that I love my daughter beyond time and measure. I would have given anything to save her, but I had to accept
the reality that she could not be saved.
I have been plagued by the myth that by ending our pregnancy early, I some how got out of grieving her death. The truth is that I grieve for my
daughter everyday. I grieve for the life she lived, and for the life she never got to live. To some, it may seem as though we took the easy way out.
To those I say that there is no easy way to lose a child that you love. My husband and I were blessed to have had a beautiful little girl for too
short of a time. In my heart how she died is irrelevant. The fact of the matter is that she died, and each morning when we wake up, we face another
day without our daughter. That didn't change because we delivered her early.
But for all of the harsh realities faced, there have been amazing lessons learned.
My daughter has taught me about love, about life, and about myself. I have learned that it is OK to stand up for what I believe. I have learned
that I can endure, that I can survive even the most devastating of losses. Shelby's short life has given me strength, has taught me acceptance, and
above all, has shown me the true meaning of unconditional love.
Coming to terms with the decision we have made has been an ongoing process. Each Christmas Eve I am reminded of all that never was, and I wonder
what life would be like if she were here. But, I believe in my heart that we did the best we could for our daughter, and I know that the decisions
we made for her were made purely out of love.