Letting go in peace
Fortunately, not everyone knows the pain of child loss. Unfortunately, I know that pain. My fiancé Marcus and I held our daughter, Maesyn Conley Cahoon, for her last breaths, on her 115th day of life, but only about 10 days after her due date.
From her birth at 25 weeks gestational age, Maesyn’s life was a miracle, with one exception: she had Fetal Inflammatory Response Syndrome. It was a parting gift from my unexpected and severe pregnancy complications, which became life-threatening two weeks before her passing.
We used to talk about which sport she would be able to play, now we were talking about if she could ever breathe on her own, if she lived. We call some infants miracles because they live through circumstances when so many others don’t. Maesyn was both the miracle and the unlucky in her short lifetime.
Two days before Maesyn passed, she made the most intentional act of her life. Hours into me holding her, she extubated herself in a split second. I will never shake the sights, sounds, and feelings of multiple attempts on an emergency reintubation mere inches from myself. Her spirit was too big for her failing body, and the best we could do, as her parents, was to honor that.
I take comfort in knowing that I provided for Maesyn as much as I could, yet her greatest gift came from the nurses and doctors on her last day. Marcus and I were given the choice to take Maesyn outside for her final moments. We had no hesitation in taking that opportunity. May 14th 2021 was the perfect day: mid-70’s, mostly sunny, with beautiful, fluffy clouds dotting the sky, the wind chimes singing in the breeze, and the happiest birds filling their bellies at the feeders. We were surrounded by love from countless staff members as Maesyn breathed fresh air on her own, for the first and last time. It was three hours of the most beautiful yet devastating heartbreak, in peace, not trauma. The same doctor who took Maesyn’s first vitals took her last, barely able to verbalize readings through the tears. Maesyn loved, and was loved, fiercely.
Had LR-131 had been law at the time, it would have made every doctor involved in Maesyn’s end of life care a criminal for providing the care that we needed. Legally mandated chest compressions and epi shots would have done nothing but overdosed, bruised, and broken Maesyn’s already dying body. The PTSD inflicted upon those present would have been unbearable for the remainder of their lives, and, most likely, costing mine too. I can’t imagine living with myself if she had died in excessive trauma and pain. LR-131 would have forced the short-sighted, non-medical, unrealistic, and religious opinions of lobbyists and the uninformed general public on Maesyn. Both the doctors and I would have been hopeless to protect her from it, barred from using ethics and medicine, labeled as murderers if we did.
LR-131 passing would be a cruel government overreach. It has zero regard for the patient’s medical status and needs. It would infringe deeply on patient privacy, setting a dangerous legal precedent to be applied to all Montanans. It would eliminate comfort care and the human right to a dignified death for neonatal and pediatric patients. It would turn compassionate, ethical, and highly skilled doctors into felons for following the wishes of parents. It would immediately drive providers out of the state of Montana, dramatically reducing services available that save unborn babies and infants daily. It would shut down entire units and facilities due to lack of staff willing to let politicians, not ethics, dictate their practice. It would cost far more lives than it could ever save.
As a Montanan, and an American, I don’t feel like I have the right to listen in on the conversations that you and your loved ones have with your doctors and vote on what you can and can’t do. I don’t ever want that right, because I know that medical decisions are private, not public. I am not you. I am not your child. I am not more educated than your doctor.
As a parent, you live to make your child’s life as good as it can be. I spent all of my time with Maesyn bringing her as much positivity and love as possible, and I know without any doubt that the staff did the same. That was true before her birth, on the first day of her life, in her final moments, and after she passed.
Vote NO on LR-131 so that all Montana parents facing tragic circumstances can say the same.
Lea Lorraine Bossler lives in Missoula. She is a Health Unit Coordinator in NICU, pediatrics, and medical-surgical at Community Medical Center.