Disclaimer: The opinions expressed in this guest post are solely those of the guest author.
Congratulations! How far along are you? Are you having a boy or a girl? Is that what you were hoping for? It doesn’t matter as long as you have a healthy baby.
A healthy baby. Little did they know, I wasn’t carrying the healthy baby of which they spoke. This well-meaning statement got me thinking: have we reached a point where we glorify health more than we honor life itself? I might not have been carrying a healthy baby in my womb, but I was carrying a life.
At our 20-week anatomy ultrasound, my husband and I learned that our youngest son, Michael Patrick, had a lower urinary tract obstruction, which affected multiple body systems. He had no amniotic fluid, his lungs were underdeveloped, his kidneys were severely damaged, and his abdominal musculature was compromised.
Michael’s case was so severe that he was given little to no chance of surviving.
Michael’s ultrasound (courtesy of Tricia Borg)
We were encouraged to consider aborting Michael at almost every appointment from that moment on. I never imagined being put in a situation where I would be encouraged to abort my child once–let alone countless times.
The most unsettling part was the misguided notion of compassion. Everyone was extremely kind and caring while simultaneously suggesting I kill my unborn child due to his medical complexities or if I thought it was too much for me to handle. Laden with fear, I could see how mothers would consider abortion amidst the half-truths and the deception that all suffering can and should be avoided.
It was surreal to carry my unborn baby knowing that he may not live outside of my womb, but I cherished every minute of my time with him. My job as his mother was, and always will be, to love him through every moment of his life, including the difficult ones.
As we sought to preserve Michael’s life and dignity in utero, we also were dedicated to restoring his body as much as modern medicine would allow. We made sure that whatever interventions we chose, we were doing it for him and not to him. Fetal surgery was his only chance at survival, but the chances of surviving surgery in utero were about 5% at best.
As our hope began to fade, one physician told us something I would never forget: Someone has to be in the 5%, why can’t it be him? I repeated that phrase to myself every day for the rest of my pregnancy. While our doctors were realistic about the challenges that lay ahead, they also offered us hope–and hope is a powerful medicine.
Michael underwent his first successful fetal surgery, but a few days later my water broke, sending me into labor. The attending physician told me that it was not worth it for the NICU team to be present at Michael’s delivery because he was too sick and there was nothing they could do to save him if he was born prematurely.
They recommended I deliver him that night and hold him until he died.
Perinatal hospice can be a beautiful option, but we chose to give Michael one more fighting chance. If he was willing to fight for his life, so were we. I received medications that successfully stopped my contractions, but we were told that I would likely deliver Michael within the next 7-10 days, given the circumstances. The staff insisted that we create a comfort care plan and arrange his funeral while we waited in the hospital for labor to begin again.
As a nurse myself, I had confidence in medicine but also prayed with every fiber of my being that the doctors were wrong. I stopped leaking amniotic fluid a few days later after a miraculous intercession and was sent home on bedrest when doctors confirmed that not only had Michael’s amniotic sac resealed, but his amniotic fluid levels were normal for the first time ever. Michael needed a second fetal surgery a few weeks later, which helped to safely get him through the rest of my pregnancy alive.
Michael as an infant (courtesy of Tricia Borg)
After surviving a difficult pregnancy, Michael went on to defy the odds again, overcoming kidney failure, respiratory failure, two different types of malignant cancers, and countless surgeries–all before his 4th birthday.
Through every obstacle he has encountered, Michael has maintained an unshakable joy and a smile that can light up a room. He is proof that there can be joy amidst suffering.
We were told a lot of things at the beginning: he would not survive, we would never hear the sound of his voice, he would never talk, he would never walk, he would not be able to do much of anything. Michael has done everything they said he never would do, but he has done it in his own way and in his own time.
And even if he never did any of those things, the simple gift of his life would be enough.
Michael on his bike (courtesy of Tricia Borg)
Today, Michael’s body is no longer failing—it’s thriving after finally receiving a kidney transplant from my husband. It was an incredible gift to witness the privilege of a father joining his son in his fight for life in such a tangible way. Now, Michael loves nothing more than to be together with our family and in on the action with his brothers and sister who have been his best motivation and his biggest fans from the start. He has changed our family for the better.
Michael has complex medical needs that are a part of who he is, but they do not define him. He will never receive a bill of perfect health, but he is so much more than the countless diagnoses listed on his medical chart. His body has many scars, but those scars help to tell his story. And to tell Michael’s story is to tell of the greatness of our God and of the precious gift of life.
And life is always worth fighting for.
