The Life and Death of My Infant Daughter
A Trip to Hell and Back
On my birthday, January 1, my wife and I announced that we were expecting our fourth child during a family and friends party that I hosted.
In April, my wife and I went to the hospital for a Level II ultrasound which is basically an echocardiogram for humans residing in the womb. Due to our first child being still born and later diagnosed with Truncus Arteriosus, a rare congenital heart defect, this diagnostic test was “standard for us” for pregnancies two, three, and now four. By the end of the test, we were told that our unborn fourth child had the same congenital heart defect that took the life of our first child when Kyle was 36 weeks gestation.
By August and months of monitoring and testing, the medical team, my wife, and I were prepared to induce labor so that the cardiologist could treat their patient directly. On August 16th, Dakota was born with much fanfare and celebration. She then spent a week in the pediatric ICU.
For seven glorious weeks, we spent time with our angel. Dakota, my wife, me, and our two children, Cade and Sierra lived as a “normal” family. We watched Disney videos and television programming, went for walks in the neighborhood, took all of the kids to the park to swing and play, visited the zoo, and lived routine, everyday, suburban life.
In late September, we went back to the hospital for open heart surgery. The doctors hoped and planned to correct Dakota’s truncus arteriosus allowing her to grow, be a vital part of our family, and live a somewhat “normal life.” After the surgery due to the severity of her illness, she left the OR tethered to a slew of IVs and a machine, called an ECMO, extracorporeal membrane oxygenation.
Several days later a complication of ECMO led the doctors to try to ween Dakota off this therapeutic. One of those horrible medical paradoxes: ECMO is keeping her alive yet also leading to death.
She died hours later due to complications from Truncus Arteriosus.
At three in the morning, my wife and I made the difficult decision to end the medical treatment that would revive our daughter however hours later those interventions were less and less effective and her condition worsened. She was not going to survive. We needed to say goodbye.
After that decision, the medical team led us to a nondescript room. We sat in shock as they removed the machines and IVs and allowed us to say ‘goodbye’ to Dakota after her death in a quiet, dimly lite hospital room without any signs of the trauma she and we just endured.
It was the most still, soundless, surreal, serene, and dream-like encounter I have ever lived through. The sounds of the silence were deafening. The scene was something from a movie or novel. We sat and held our daughter.
We cried.
Kissed her.
And said “goodbye” among our shattered dreams, bewilderment of the events that just unfolded and the reality that we would not interact with our daughter in the same ways ever again.
There would be more goodbyes at the funeral home and grave site.
That hospital goodbye will never leave me. It plays in the drive-in theatre of my mind occasionally. It does not haunt and it does not comfort. The significance of the events is that I and my wife endured this horrible experience and sought healing in our own way.
We drove home at six in the morning. Riding with traffic and people on their way to work with no knowledge of the night my wife and I just endured.
Upon returning home, I had the horrible task of telling our four year old daughter, Sierra, that her sister would not be coming home. The shriek that come from Sierra is forever trapped in my mind.
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