For Beatrix – By Megan Lawrence
A note: This is intimately personal and acutely painful. It describes our family’s experience with infant loss and how it relates to the coronavirus pandemic.
Like many families, ours is living in fear of the spread of coronavirus because our daughter, Alexis, is immunocompromised and would undoubtedly require oxygen support or a ventilator to survive if she were to get it or any other respiratory virus in the foreseeable future. My husband Noah wrote about this on his blog and in a letter to his track team, in the effort to explain why social distancing and the suspension of their season was such an important sacrifice. In it, he also mentions our daughter, Beatrix, Alexis’s identical twin sister who tragically passed away just after their first birthday. Beatrix was sick in the hospital for a month before she died, having developed pneumonia then ARDS (Acute Respiratory Distress Syndrome). It is utterly terrifying to know that we are facing a respiratory virus turned pandemic having just lost a child to a similar cause of death.
As a grieving mother, I cannot adequately explain how traumatic and agonizing the experience of her death was and has been, or how it has fundamentally changed us and the fabric of our family. While Noah has written much about it, I have shared little about our experiences with the twins’ 3-month NICU stay, subsequent hospital stays or even Beatrix’s illness or death. The loss of a child is excruciating and sharing intimate reflections on it is not something I ever anticipated doing for anyone, let alone the wider world. However, the more I have read about coronavirus, the drastic measures being taken in hospitals due to ventilator supply shortages and the failure of our government to adequately prepare for and prevent it from spreading, I wanted to share our experience with the hope it would be one more motivator for people to stay home and stay healthy.
Think about the people you know and love and think about how they will die. How do you want to remember it? How will it change you? Will you have any regrets? It is heartwarming to imagine everyone dies peacefully, in old age, surrounded by family. In the grips of a pandemic, we no longer have that luxury. Imagining someone’s death sounds extreme or even taboo, but bear in mind that Beatrix died despite our having the best possible scenario for the worst possible situation and I will carry that pain forever. We had every advantage and medical intervention available and we couldn’t save her. In the panic of the last few days and weeks, recommendations have been made for stockpiling food, avoiding crowds, etc., but more needs to be shared about what it is like to have a loved one who is sick with coronavirus because I believe that would convince more people to take this seriously, stay home and implore those on the fence to do so too.
When Beatrix was sick, we were fortunate to have every advantage: excellent health insurance, time off work, admission to a large teaching hospital that was a 25 minute drive away, an amazing PICU staff, 24/7 access to Beatrix’s room, the ability to participate in the medical team’s daily rounds, a loving network of family and friends to help us with childcare and meals, access to the local Ronald McDonald House, and more. All of these privileges lightened the immense emotional trauma associated with Beatrix’s hospitalization, but the most meaningful and cherished aspect of our experience was that we were with our baby as she died. We held her, sang to her, told her we loved her and kissed her as much as we could. Her sisters were there to see her one last time. We were surrounded by family. It is a moment etched into my soul. We celebrated her life with a meaningful visitation and a beautiful funeral service attended by family and friends from near and far. Our hearts will forever be torn open but these events provided us a semblance of closure I am so grateful to have had, because they have helped to fortify us as we seek to move forward.
To know that little or none of what we were blessed to have would be available for those who are sick with or ultimately die from coronavirus is heartbreaking. Keep in mind that you can’t cure a virus, just provide medical interventions and health support while it runs its course. This can take WEEKS. Think about it. No bedside visits. No holding your scared child as they get diapered, bathed, have endless blood draws, get x-rays or receive respiratory therapy by strange people in hazmat suits. No ability to comfort them in the middle of the night when they wake up confused and afraid. No regular communication with doctors and nurses because they are working day and night to care for everyone else. Likewise, no hugs, kisses, last conversations or declarations of love shared with parents or grandparents who die because of the virus. Funerals and burials will likely be delayed to prevent new outbreaks. It is a beast who has shown little mercy and we shouldn’t expect it.
I have many painful memories of Beatrix’s illness but the hardest to think about is the afternoon and evening she was admitted to the hospital. That morning I knew she was sick and took her to the pediatrician who told me almost immediately we needed to go to the ER. They were expecting us and she was immediately seen by a team of doctors and nurses who started treating her with oxygen and fluids and performing diagnostic tests before moving her up to the PICU. Beatrix had a nasal cannula to deliver oxygen for several hours but her oxygen saturation kept going below 90 percent, which meant she needed to be intubated. When patients are intubated for mechanical ventilation, they are sedated because it is a painful intervention and they remain sedated as long as they need a ventilator. There was no way I could have known while it was happening, but this was the last time Beatrix and I looked into each other’s eyes. The last time I was sure my baby knew her mother was at her side. She would remain sedated and on a ventilator for the longest month of our lives before passing away in Noah and my arms.
As news and warnings were released about coronavirus and it continued to spread, I thought about and prayed for Alexis, my dad and so many others who are immunocompromised. I thought about Beatrix and how closely her illness paralleled what is now a pandemic. I grew more anxious and more furious that not enough was being done to prevent the spread of the disease. I thought that if people knew an iota of what I know about how hellishly painful it is to love someone who gets sick and dies, especially from a respiratory virus, they would think and act differently. Based on the projected growth models of the pandemic, I believe there will be a second epidemic, that of PTSD, for anyone remotely touched by it. Even with our access to the hospital and everything we were privileged to have helping us shoulder the burden, experiencing death and bereavement is heartbreaking and life altering. We are not prepared for death. Not as individuals, families, communities or as a nation. We are not adequately prepared mentally for the experience or fallout when family members and friends die in normal circumstances, and we are in no way ready for the preventable loss of life in numbers akin to those seen in war. Now it is a matter of waiting to see who is sick, who might be and who survives. Love your family. Love your friends. Do what is best for your health and theirs.
Post Script: After I finished writing this yesterday, I went for a run. I came home to learn that one of the first confirmed cases of coronavirus in our county is at a nursing home less than a mile from our house, Noah’s school, our older daughter Clio’s daycare and the library where I work. (by 3/20 there were 44) I am filled with dread for the next few days and weeks but I am also fiercely determined that Noah and I can be present with each other and Alexis and Clio. My girls have been the reason I’ve gotten up every morning for the last year and a half and making sure their physical and emotional needs have been met has been paramount. Yesterday afternoon was no different, following the news update we promptly went outside and played. Maybe this is because I know that life must go on and the girls needed fresh air. Maybe it was because I needed to be as far from the news as possible. Regardless, I want to look back at this time knowing we were together as a family. Beatrix died about a month after her first birthday, one that was celebrated with ice cream and champagne in our backyard with family and friends, and a pizza party at the hospital for our beloved NICU staff. One of my most cherished possessions is a picture of the five of us at the twins’ first cross country meet to watch Noah’s team. That day I took Alexis and Beatrix to the optometrist to get Alexis’s first pair of glasses, then we hustled to Clio’s daycare to get her and make it to the meet in time. In the parking lot I changed the three girls into their matching ‘Daddy Shirts’ which proudly displayed the HCXC logo and were a birthday gift from the wife of another coach. After the races were over, Noah found our picnic blanket and stopped for hugs. A rival team’s coach walked by and we impulsively asked him for a picture. The result was a miraculous alignment of smiles and focus from my three under three. The fates were in our favor and that one photo was all we needed.
My point is this: you may be focused on the news, stressed about trying to work from home with kids underfoot, worried about bills after getting unexpectedly laid off. We don’t know what is coming or how things will be on the other side, but don’t forget to be present for yourself and one another and make the best of the situation while safely at home. Our halcyon days are the memories with Beatrix at the hectic start of a new school year and cross country season for Noah. Now I’m looking to create more happy memories, as challenging as that might be.
Finally, another part of our experience I think people should know about is that we genuinely didn’t realize how serious Bea’s condition had gotten until two weeks into her hospitalization. Even now there are days that I still can’t believe something like this happened. Our society believes that medicine will always work, will always get us better, but we tragically learned its limits. Beatrix developed an additional infection (easy to do when you need to have two PICC lines and are intubated) and our conversations about when she would be coming home gradually slowed. I remember the day the doctors told us that IF she survived she would need a tracheostomy and potentially breathing assistance for the rest of her life, because her lungs had been scarred so badly and she wouldn’t be able to breathe on her own. I was crushed. I thought about how hard that would have been to adjust to as a family and how vastly different her life would have been from what we imagined for her. But then, clarity. I didn’t care because she’d be alive. She would be home with us. With her sisters. We were lucky when Alexis and Beatrix left the NICU. Having been born at 26 weeks, they required so much medical intervention to survive and thrive. When they graduated the NICU having minimal complications, I naively thought we were out of the woods and the hard days were largely behind us. I knew there were things we needed to be aware of, like Flu and RSV season, but preemies are preemies forever, and protecting their health demands constant vigilance. For this reason, I will always feel guilty that Beatrix got sick. That in hindsight we didn’t do more to protect her. I fear there are a lot of people in our country and around the world who are either in denial or still trusting misinformation or haven’t been able to wrap their brains around what is happening. I don’t think we were in denial about how fragile Beatrix’s health was, but knowing she would die was such a hard realization to come to and act on that I can still feel the whiplash ricocheting around. Again, there is still a lot of doubt and disbelief about how bad coronavirus can be on individuals and will be for our country and the world. I fear the rapidly traveling tsunami of lost innocence. It is an understatement to say that in many ways our family is still reeling from Beatrix’s death. I would give almost anything to know that things will be different for families after the coronavirus pandemic.