Monday Mournings: The Death of a Child

My name is Elizabeth vonTauffkirchen and I’m often called Liz or Lisa by my friends. Since 2006, I’ve worked at the Lavenia McCoy Public Library in Bayfield, Colorado. I am Head of Children’s Services and IT.

DW:  Who was the person that died?
Elizabeth:  We lost our firstborn child: a daughter named Julia.

DW:  How old were you at the time?
Elizabeth:  I’m really not sure why this is relevant but I was 30ish.

DW:  How old was Julia when she died? 
Elizabeth: Julia was eight and a half months old.

DW:  Was it a sudden death or did you know it was going to happen?
Elizabeth: Well, this is a complicated question. Julia was born with Apert’s Syndrome which is extremely rare (about 1 in every 180,000 live births). Apert’s Syndrome brings with it some physical differences, including mitten-hand syndactyly (the fingers are fused together, the thumbs separate) and craniosynostosis (premature fusing of the cranial plates). Sometimes, but not always, Apert’s is accompanied by more serious issues like kidney problems (which Julia did not have) and heart problems (which she did). Although Apert’s does require multiple surgeries, it is rarely fatal.
Julia’s heart condition was known as Tetralogy of Fallot with pulmonary stenosis. The Tetralogy of Fallot was apparently fixable and the pulmonary stenosis turned out to not be. Julia developed congestive heart failure. We flew her to Denver and had emergency heart surgery 9this was her second heart surgery). The surgery seemed to be successful. At 4am the next morning, Julia went into ventricular fibrillation and cardiac arrest. The CICU nurses kept her alive through CPR and were able to stabilize her. Julia never regained consciousness. After more than a week, the neurologist came to us with the information that she had no brain activity and we made the impossible decision to discontinue life support.     

DW:  Had you experienced any other deaths in your personal life before Julia?
Elizabeth:  Just after high school, one of my best friends died from complications of a bone marrow transplant. This was exceptionally hard for me because until then I had only lost elderly relatives. Ryan (my friend who died) was the first time I had lost someone young and close to me.

DW:  Were people supportive of your grief or did they shy away when you were grieving?
Elizabeth: People were overwhelmingly supportive of me and my husband when we lost our daughter. I was moved and shocked when St. Mark’s Church (our parish in Durango) was completely packed for my daughter’s funeral. I mean a baby funeral? Could there be anything sadder? But our friends turned out in droves. So many people came, I was truly touched.
There were those who avoided us after her death. I don’t blame these people. I understand the fear: the fear of death, the fear of the unknown, the horror of even contemplating the loss of a child.
There were also those who avoided us after she was born, because of her physical differences. I don’t blame these people either. I used to be one of them. I was never comfortable around those with physical differences. I just didn’t understand. Now I do. 

DW:  Is there anything you wish you'd done differently with Julia?
Elizabeth:  Obviously, I wish I would have recognized her congestive heart failure earlier. I did take her to multiple doctors (she had an average of three appointments a week and I took her more often in the end). However, in retrospect I realize if the pediatric cardiologist didn’t recognize the heart failure it is unlikely I could have.

DW:  Was she buried or cremated?
Elizabeth:  Julia was cremated.

DW:  Did you learn anything about the grieving process that you'd like to share?
Elizabeth:  I attended a hospice group through Mercy led by Norm Gottlieb that was fantastic. Although it was difficult to attend at times, and some weeks I couldn’t bring myself to go, it was tremendously helpful with the process. The hospice group also helped me feel less alone.

DW: Last but not least, were any songs played at the memorial that you'd like to share?
Elizabeth:  Julia was too little to have any favorite songs, although she did love music. I sang a few songs to her of my own creation that seemed to be pleasing to her. We sang Amazing Grace at her funeral. You are My Sunshine always reminds me of her and makes me cry to this day.