Incompatible With Life


As I read former Pennsylvania Senator Rick Santorum discuss his precious daughter Bella’s struggle for life despite a diagnosis of trisomy 18, tears streamed down my cheeks.  I am reminded that my husband and I for a short time faced the same diagnosis with our baby boy.

Almost 8 years ago, I received a call from my ob-gyn who informed me that my unborn son might also be born with three No. 18 chromosomes.  I was referred for an amniocentesis, to a genetic counselor and peri neo-nataologist for further testing.  Feeling pressured on the phone by my ob-gyn to quickly make these next appointments and confused by the potential diagnosis, I questioned the rush for decisions.  I was abruptly informed that if he tested positive, she wanted to make sure I had time to terminate my pregnancy.

There is no way to describe my emotions as I hung up the phone that day.  Or the horrifying range of emotions my husband and I went through over the next few weeks while we surfed the net seeking answers about what is commonly called, Edwards Syndrome.  To my dismay, what we found was extremely bleak.  As the Santorum’s were told, the phrase “incompatible to life” repeatedly was used to describe trisomy 18.

While waiting those weeks for my appointment at the hospital, I remember praying for the strength my husband and I would need facing this possible diagnosis.  We knew, no matter if our son was ultimately diagnosed with Edwards, that I would give birth to our son.  What I didn’t know, and I prayed for daily, was the grace to carry our son, whom we called Indy, another 4 months and giving birth to him all the while being told he was going to die.

I will never forget the words of the geneticist at our appointment – “If your son tests positive for trisomy 18, we will spend the rest of your pregnancy preparing you for his death.”  My husband and I just sat there, unable to speak.  This had been an incredibly emotional couple of weeks and now to hear it spoken out loud was heartbreaking.  But in my heart I didn’t believe it was possible for the beautiful son I saw on the ultrasound to have this condition.

Many hours later, we found out that the initial testing was wrong.  The specialist suspected the markers were misread at our earlier appointment by the radiologist.  4 months later, I gave birth to a healthy baby boy who is now a very funny 7 year old.

Rick and Karen Santorum did receive the devastating diagnosis of trisomy 18 with their daughter, Bella upon her birth.  Rather than accept a death sentence, they have fought every step of the way for her life.  His article talks about the difficulty of finding doctors to treat their precious daughter as a patient rather then referring her to hospice care and waiting for her to die.  I am amazed at their bravery, courage and faith, especially in the face of the odds.  Approximately 90% of children with trisomy 18 die either before or during birth.  Of those who survive birth, 90% die during their first year. Their beautiful daughter Bella has now celebrated her 2nd birthday.

Rick Santorum and his wife are unbelievable witnesses to Life, in spite of immeasurable odds.  Bella’s life is a testament to faith and God and her parent’s unconditional love.

On her second birthday, Mr. Santorum wrote,

“All children are a gift that comes with no guarantees. While Bella’s life may not be long, and though she requires our constant care, she is worth every tear.

Living with Bella has been a course in character and virtue. She makes us better. And it’s not just our family; she enriches every life she touches. In the end, isn’t that what every parent hopes for his or her child?”

God Bless them for publicly sharing their family.  I pray that they are a beacon of hope and comfort to others whose children are given this bleak diagnosis.  In the face of so many doctors and specialists advising abortion and hospice for these children, the Santorums remind all of us that each child is a precious gift from God and deserves a chance at Life.

Copyright 2011 Lisa Jones


About Author

Lisa Henley Jones is a former stay-at-home mom who discovered a new career as an online marketer/social media manager. She blogs at Of Sound Mind and Spirit with her sister, Shelly Kelly, about faith and family life. During the hot summers in Houston, Lisa can be found by the pool eating popsicles with her husband and three school-aged children.

1 Comment

  1. Lisa,

    What a remarkable, loving, and courageous story about your family and the Santorums.

    As a Pennsylvania republican, I can honestly say that many of us were saddened by Rick’s loss of his Senate seat, and for good reason. He and his wife represent dignity and compassion, and we are in need of more men and women of this strength in our government. We are so grateful for their public display of their genuine faith.

    Thank you for sharing their story, and yours, too! They fill our hearts and give us hope! God bless!

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