By: Marissa Steinhoff
“If we tell you to turn off the machines, will you think we are the dumbest, worst parents alive?”
I remember sitting in a hospital conference room around a huge table. It was my husband and I and dozens of doctors and specialists. Tears were running down my swollen face and through the glare of the tear drops I looked one doctor directly in his eyes and while gasping for air with a trembling voice I asked him that question.
We were facing ultimately the hardest decision we have ever had to make. Nothing can prepare you for that decision.
Three days prior our first child, our daughter, Paige Jordan, made her debut. It was a scary one and not like anything we had imagined. It was January 1, 2011. New Year’s Day. I was 36 weeks and my water broke at home. The hospital was a blur, but Paige’s heart rate and activity significantly decreased and she was born via an emergency C-section. Being new parents we had no idea what to expect or what was normal. We did know something was not right from the very moment she was born. Paige, our baby only seconds in this world, was rushed out of the OR.
Nobody was saying anything, but we could sense something was wrong.
Back in the recovery room a transport team came in and asked permission to take our brand new baby by ambulance to Children’s hospital. This was the first of many decisions we had to face head on for the well-being of our child. This one was easy. YES! Take her where she can get the best medical attention and help her get well. My husband went with Paige and I had to stay as I had just come out of pretty major surgery.
My family of three separated and I lay in a quiet hospital room hoping and praying that my baby would be ok. The silence was broken by a late night phone call. It was a nurse from Children’s. Her voice was soft and shaky.
“I’m afraid I don’t have great news. The doctors have been running many tests on your sweet Paige and they believe your little girl has Leukemia.”
The air was sucked out of me. I felt like somebody had punched me right in my gut. My body laid limp on that bed. I handed the phone to my mom who was staying with me. I watched her eyes widen in disbelief as the nurse told her the news. Leukemia! This wasn’t happening! My head was racing and my heart was breaking. I needed to get to my baby.
The next morning I was released against doctor’s orders, but getting to my little girl was the only thing that mattered to me. I knew she needed her mommy and I needed her. I was prepared to love my little girl.
I was not prepared for the life changing decisions my husband and I would have to face over the next few days.
As I entered that NICU room and saw the machines and tubes coming from my tiny four pound daughter I was quickly reminded how precious life truly is. Here my daughter, not even 24 hours old, was fighting for her life. It was at that moment I knew this wasn’t about me or my feelings or even my happiness. Everything had to be focused on Paige. Decisions had to be made quickly. You could see the urgency in the eyes of the doctors when they came to get signatures for procedures and such. Never in my wildest dreams did I think I’d have a doctor ask me if he could drain blood off my baby’s brain in hopes of stopping brain damage.
I remember thinking, I’m not qualified to make these decisions. What do I know? The requests kept coming and decisions had to be made. We did the best that we could, with the knowledge that we had, and the love we had for our daughter.
Her well-being was all that mattered and honestly, we just put all our trust in the doctors and nurses. We knew they had our daughter’s best interest at heart and they were on our team. Team Paige.
Decisions were being made often and although it wasn’t easy, after each one we felt like we were doing the right thing. We felt like we were doing what was best for Paige.
All those decisions, no matter how big or small, could never have prepared us for the final decision we would have to make in the NICU.
On January 3, 2011, my husband and I sat with dozens of doctors and specialists in a conference room at Children’s Hospital. One by one those doctors gave us a report and revealed how very sick Paige really was. Not only did she have Leukemia, all of her organs were enlarged, she had bleeding on her brain causing severe brain damage, the right side of her body was paralyzed, she would never walk, she would never talk, and her condition was not conducive with life outside of the hospital.
Although these doctors were sincere and sympathetic and handled the horrific situation with care, it felt like we had been through a public beating. There we sat with all of this information and a decision to be made. How do we make this decision? We cried, we tried processing, and we remembered this was not about us. This was not about our happiness. This was about our little girl. I think deep down we both knew what was best for Paige, but neither of us could bring ourselves to say the words.
Tears were running down my swollen face and through the glare of the tear drops I looked one doctor directly in his eyes and, while gasping for air, with a trembling voice I asked him, “If we tell you to turn off the machines, will you think we are the dumbest, worst parents alive?”
That doctor stood up, walked around the table, put his arms around me, holding back his tears he whispered to my husband and me, “I will think you are the most loving and selfless parents I have ever met.”
There it was. Decision made. Did it hurt? The pain was a pain that I had never felt before. Every inch of my body ached. I live with that pain, so that my daughter did not have to know pain. These decisions were not about my husband and me. They were not about our happiness. These decisions were made with love for our precious Paige.
About Marissa Steinhoff
Marissa is a teacher, wife, daughter, sister, and friend, but her most valued title is mom! She has a wonderful husband, Patrick, and three children: Paige, Landon, and Mya. Paige is their angel that the Steinhoffs lost on January 4, 2011. Paige was born with a rare form of Leukemia that was not conducive with life and she lost her battle at just 4 days old. Landon and Mya are their rainbow babies that are a constant reminder of their big sister in Heaven!
These are controversial topics and many that people don’t realize other families face.
Share’s mission is to support those whose lives are touched by the tragic death of a baby through pregnancy loss, stillbirth, or in the first few months of life. Share does not take a political stand on these issues. Share is not responsible for guiding or counseling families in their decision-making process. We all grieve and mourn for our babies. Some of our parents have had to choose the day that they were going to lose their baby. But the truth is still: each family wanted and love their babies. We all search for support, healing and hope. All grieving parents deserve that.
As a support organization it is always our goal to provide a safe and compassionate place for every family who has suffered the great loss of their baby.
We hope this conversation allows for continued healing and an understanding from others of the great need for long-term support for every family making difficult decisions. If you are in need of support after making the decision to terminate for medical reasons, please reach out to our Bereavement Care Manager at firstname.lastname@example.org or call 800-821-6819.