A lifetime of love for baby Nora

By David Hlavac

My wife and I are now members of that exclusive club that nobody wants to join: Parents who have lost a child. But through our grief, the staff at Children’s neonatal intensive care unit (NICU) made a terrible experience a little bit less unbearable by focusing first on the comfort of our newborn daughter, then on our family’s emotional health and well-being.

At 30 weeks gestation, we realized there might be some issues with our daughter — there were “soft markers” for some sort of genetic anomaly, but without further tests we couldn’t be certain about her prognosis.

At 35 weeks, we had a scheduled c-section delivery and our daughter, Eleanor Theresa, was born. She weighed just over 3 pounds. After I cut the cord, I heard a faint cry, then silence. The doctors whisked our daughter to an adjoining exam room, and when the nurse opened the door to say, “We need the father.” That was when I realized this story wouldn’t have a happy ending. In my mind, I remember thinking,” Please let her live — please let it be Down Syndrome or something…anything that isn’t a death sentence.” But when the neonatologist said he suspected our daughter had Trisomy 18, I knew we would be saying our goodbyes to Baby Nora very soon.

Once I broke the news to my wife, who was still on the operating table, I sat down with a neonatal nurse who explained a few possible scenarios to me. She did not sugar-coat things, but she was warm and understanding — a perfect balance that (in hindsight) probably prevented me from a rollercoaster ride of emotions.  It is hard to reconcile the joy you feel as a new parent with the grief of knowing your child is not going to survive, but our nurse emphasized how lucky we were that our daughter was born alive, and how we should make the most of our time with her. So while my wife recovered from her surgery, I camped out in the NICU and crammed a lifetime of love into my daughter’s brief life.

The NICU nurses didn’t look upon me with pity, and they didn’t question me when I asked to hold my daughter. They simply told me they were there to help however they could. Despite being on a ventilator, they gently moved Nora out of her isolette and placed her in my arms. I rocked her and sang to her, holding her tiny body skin-to-skin the way I had done with my surviving children when they were first born. It gave me the fleeting feeling that everything was normal and just for a moment, I simply felt like a proud dad again.

Before it came time to take her off the ventilator, the nurses prepared an array of keepsakes for u– plaster-cast footprints, a lock of hair and a photo session with Now I Lay Me Down To Sleep. They connected us with a social worker who helped prepare us for the overwhelming grief that was welling up inside our hearts. They encouraged us to bring our families — including our surviving children — to the NICU so they could all meet Nora. Each of these activities are now etched in our memories as milestones in our daughter’s short life, and we are so grateful for the entire NICU staff at Children’s for making those remembrances possible and giving us an honest, non-judgmental and compassionate experience. Despite our grief, we will always remember the care the nurses, doctors and social workers at Children’s Hospitals and Clinics of Minnesota showed for our family. Just as we will never forget Nora, we will never forget their love and respect.

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2 thoughts on “A lifetime of love for baby Nora

  1. Barb

    I am so sorry for your loss!! I also belong to that club, that no one wants to be a part of!! It will be 15 years Oct 26th that our angel got his wings. Also for us with out the great support and knowledge of the staff, our loss would of been even worse. Children’s helped us a lot! I am sending prayers for all of you, we never get over our loss, we learn to live with it, and with many years my heart doesn’t feel like it is in as big of a knot. Please believe, with every negative there is a positive, some times we don’t see it right away, but someday I hope you will. God Bless all of you. Barb

  2. Ginger

    I read your story and thought of my baby girl Chloe that had also been born with Trisomy 18 , we had no idea that anything was wrong with her before her birth, I also had a c section, she was brought to Childrens Hospital and I got to join her 2 days later, that is when we were told she had ” no life span” ,I had brought my children to meet her and her god parents ,grand parents, aunts and uncles, we had her baptized there in the hospital. In her 4 days of life she brought us love that I will never be able to explain . She would of been 10 years old this year and there is not a day that goes by that I do not think about her, her sisters have very much kept her memory alive. My thoughts and prayers are with you and your family , it is the hardest thing for a person to go through, but with love and understanding you will survive. I believe I will see my Chloe again someday and that helps me.

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