To Offer or Withhold Medical Care?

The Decision

After the birth of our son, my husband and I were faced with a decision. A decision for our child to have surgery. The thought of my son being sedated and undergoing a procedure requiring a knife made me want to faint.

The doctor assured me he’d always been successful in performing this surgery though he’d never attempted it on someone with my son’s diagnosis. I appreciated his confidence and gulped thinking it would be his first time.

But, we trusted this was needed to bring our son home.

So on a warm August day, I kissed my son’s forehead before the nurses wheeled him into surgery. I waited for forty-five minutes on a bench in the hallway with prayers on my lips. When the doctor appeared with a smile, I breathed a sigh of relief. My prayers were answered.

So began the first day of my son having a trach placed via tracheostomy surgery. Visiting my son after surgery, I first noticed the tube going into his mouth was gone along with the tape holding it in place. I could see my son’s handsome features clearly. His lips were pressed tightly together giving me a scowl. The nurse assured me he was receiving medications to keep him comfortable.

Baby in the NICU
Before First Surgery
Post Surgery
Look Ma, no tape.

My son did eventually come home having a trach, a ventilator and a g-tube with all the accompanying equipment. But, he was home. And happy. We were overjoyed. And still are.

The Dilemma

Looking back, I see the benefits of having surgery. It helped my son to survive and even thrive. Would we do it all over again. I’d say, “Yes.” Was the process of going through surgery without pain or discomfort? No. Did my son need a machine to be kept alive? Yes. Thank God for the sophisticated equipment in the hospital and the home ventilator which allowed my wee boy to come home.

I receive messages from around the world asking how my son, given such a dire diagnosis, survived. Prayer helped in ways I can’t imagine. And, we had an amazing medical staff willing to do anything to send our son home. Did they believe he’d survive? I’m not so sure, but they were willing to pull out their medical playbook and use it.

They were willing to pull out their medical playbook and use it. Click To Tweet

In talking with a handful of families faced with Thanatophoric Dysplasia (TD), I’ve heard the medical community questions how much intervention should be given when a child is born with a “not compatible with life” diagnosis. Should needed surgeries be performed? Should they be put on a ventilator or even be given oxygen upon birth? What would the value benefit be? A life lived longer? For how long? Should a child be placed on a machine for survival? Or should care be withdrawn?

[su_button background=”#2dadef” size=”6″ center=”yes”]The term, Thanatophoric is Greek and means, ‘death bearing.'[/su_button]

Who decides?

Is this a purely parental decision influenced by a doctor offering their advice using with words like “suffering” or “quality of life.” Or, as in some cases, is it a case of insurance approval?

I know there are varied and passionate answers to these questions. I can only offer my experience in a feeble attempt to answer such weighty issues. As a Momma of an eleven-year-old survivor with a not compatible with life diagnosis, I advocate for all measures to be given. In giving my son needed surgeries, he was given a chance at life. He was given a possibility of survival. And survive, he did. Yes, he had to endure six months of intensive care, two surgeries and 24-hour nursing care for several years. And because he endured, I have been blessed with thousands of heart stopping smiles like this one.

Life After Surgery
Smiling Survivor

The battle, though, remains for others facing a TD diagnosis or any diagnoses considered “not compatible with life.” How much care should be offered or withheld? This is the question. What do you say?

Evelyn Mann

Author, WIP, A Miracle In My Living Room

www.facebook.com/amiraclemann

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