Honouring the Incredible Work of Dr. Bullock and Miles’ Mission
At CuddleCot, we are continually inspired by the remarkable individuals and organisations who dedicate their time, energy, and hearts to supporting families through loss. Today, we want to shine a light on the incredible work of Dr. Bullock and Miles’ Mission. Their compassion, commitment, and vision are making a lasting difference for families during the most difficult of times. We are deeply grateful for their partnership and the positive impact they bring to so many lives.
Purpose and Personal Connection
On October 11, 2022, one year after losing Miles, we held a birthday party for him. It was then that his mother, Jennifer, said she didn’t want us to forget him, and she wanted his few moments on earth as a stillborn to count for something. That evening, I mentioned us starting an organization in his honor, and called it, Miles’ Mission. In my own way, I wanted to do something to both acknowledge my grandson and try to help in the healing process for my daughter. Watching Jennifer and our family grieve was both traumatic and life changing. As the father, grandfather, husband, and patriarch, I felt the need to do something. My wife was there nurturing the family, so I had to do something to navigate our family through our grief. I needed to focus on something that I, as a man, could DO other than stand by in a support mode.
When we formed Miles’ Mission, I learned of the Cuddle Cot cooling device. Jennifer did NOT receive one when she was in the hospital. Once we found out about them, it was my goal to find out why and if other hospitals had them. It was then that we discovered another organization placed Cuddle Cots into hospitals. Refocusing our effort, we found out about many other elements of the bereavement process that weren’t given to Jennifer. Not receiving a Cuddle Cot and not receiving additional care was the turning point for me. I made it my goal to find out why not all hospitals were doing the same thing for bereaved patients and what else did we miss out on in the process. If it wasn’t for us leaning about the Cuddle Cot, we may not have gone any further into looking for ways to improve patient care.
Because of our story, we learned of the many other stories. Thousands of women and families affected by loss. We also changed our focus from stillbirth to pregnancy and infant loss. Our oldest daughter, Pamela, has endured two miscarriages. I started meeting more women and men who had suffered a loss and the pain they were in. This fueled my efforts to try and do more for them, us, and even those of whom we may never meet. Knowing how much pain we have been in, and seeing the pain of other families, continues to propel me towards making a difference for all of us in the community of pregnancy and infant loss.
The Journey to Policy Change
In 2023, I met team members of the Columbus Public Health Department. They oversee much of what happens with families of loss, including the FIMR report (Fetal and Infant Mortality Review). Through our partnership, one of the team members introduced me to the President of the Central Ohio Hospital Council. He and I had several meetings, and as he realized I wasn’t going away, we brainstormed on how to start the process of policy change in hospitals. He then spoke with the presidents of the four major hospitals in the Columbus, Ohio, area and they agreed to allow him to form a committee on change. The committee was made up of nurses, chaplains, OB/GYN physicians, and directors of women’s services.
There were a few challenges in the process of forming the committee. First, the ability to make sure everyone was on board to make changes is never easy. And the changes would be for the betterment of all involved and not just a few. Second, keeping the list of standards to a workable level meant having to prioritize what could be feasibly done with minimum resource output and what could be done immediately prior to additional training. Of course, prioritizing was a challenge because of the varying opinions of the committee as to what is necessary and what could be done later. The other challenge was more personal. While Miles’ Mission had introduced the concept, we were not as actively as involved as I had wanted to be. Even after we were told the document was finished, when the president of the COHC heard our testimony before the Ohio Senate Health Committee, he realized there was another piece missing from the document. There are still pieces we would like to see added, but because they have turned the policy document over to us, we are looking to find ways to add what we believe still needs to be done to further help grieving families.
The whole of Miles’ Mission is very emotional. Everyday in meetings, conversations, Zoom calls, and emails, I am continually presented with my grandson’s name or image, reminding me he is not here. Everything we do has an emotional attachment to it both painfully and in a way, rewarding. It is an honor to know that Miles’ Mission was credited with introducing these changes, so yes, there is a little bit of pride and fulfillment of knowing Jennifer’s request of Miles not being forgotten lives on. Also, the fact that because of Miles, other families of loss will be helped in ways we may never know but will be thankful for regardless.
About the Community Standards on Perinatal Loss Care
We are fortunate to have within our circle of friends a Vice President of Patient Care/Director of Nursing who oversees Labor and Delivery. Her hospital is very innovative when it comes to caring for families of loss. Because of her, we learned so much about what can be provided for these women, men, and families. Their hospital is about 20 minutes from the hospital where Jennifer delivered Miles. To find out that two hospitals, twenty minutes apart, are doing two different things for families of loss didn’t make sense to me. Further, the hospital where Jennifer was is supposed to be a leading and reputable institution. For them to not have provided her with a Cuddle Cot, bereavement package, a bear or some other animal, counseling services, or follow up, bothered me greatly. So, we set out to change the narrative in making all hospitals be as similar as possible.
There are three aspects that I deem essential: One, that all patients receive optimal bereavement care. The key word here being optimal. In many other categories of healthcare, we see the prioritizing of care for patients, even to the extent of calling in a specialist. In the area of bereavement and child loss, there are no specialists, but there can be well-trained staff that can provide the very best of care for every patient in all the hospitals. Two, the recognition of all family members affected by the loss. The focus is and should be the mother, but the father is suffering immensely as well. Then there are the siblings of the child who may not fully understand or are not old enough to comprehend what has happened but are emotionally affected just the same. The grandparents are suffering the loss of a grandchild and for the grief their child is in. And then there are the aunts and uncles of the child. It is a total family loss and should be recognized as such. Then last, upon discharge, the mother and father should be properly informed as to their options. Jennifer has an uncle who is a funeral director, but she didn’t know there was an option to request him, so the hospital made the choice for her. All information from funerals arrangements, burials, counseling, and follow-up should be a part of the total bereavement package both in the hospital and at discharge.
When Jennifer lost Miles, my wife and I were able to visit. It was during the COVID months, so none of the other family members were able to come to the hospital. To this day, there are still tears from Miles’ brother for not being able to see him or hold him. For my wife and I, those were precious moments to be able to bond with Miles through kisses, soft touches of his hands and cheeks, and holding him. It wasn’t about the response he was unable to provide; it was about our being able to let him know how much he is loved. Making memories, even for a short period of time, has a lifelong impact in acknowledging our little angel boy in heaven.
I appreciate the fact the standards try to help healthcare professionals know how impacting they can be in the early stages of healing for a mother. Their ability to speak properly, know when not to speak, or how to handle the anger and grief of either parent is vital in the family knowing they are not alone. Being empathetic is a key element to caring for those who’ve lost and letting them know there is hope ahead.
Looking Ahead
It is unfortunate that we had to have something in place to establish that change needed to be made, but my hope is for hospitals to remember their place in society and be driven to give the very best care to ALL their patients, regardless of situation or circumstances. The purpose of this document is not to make hospitals feel as if they don’t care, but for them to see how they can better themselves in the long run. It is a document like this, coming from the outside, letting them know how we as patients would like to be treated, be informed, be cared for, and to be recognized as human beings. Especially families of pregnancy and infant loss, dealing with the most horrible time in their lives, needing comfort and care from those in whom they put their trust.
Yes, we are looking at a variety of options to be able to do more with this. It is my hope to expand upon these current elements of the COHC, make a few alterations, and then present them in a manner for other hospitals in the state of Ohio to be able to implement them. And it would be even better if this was something we could take nationally for all L&D services to use for good.
The next phase includes looking at ways to make the document and information more expansive. Working with Flexmort and its policies will help immensely. While we may not be able to do all that is being done in Europe because of our insurance and legislative guidelines, there are still elements of Flexmort’s standards that can enhance what we’ve begun. With your help and insight, we hopefully will continue to make inroads, by improving bereavement care for all families of loss.
First, remember why you became a healthcare professional. An oath was recited to do the best you could to help in the healing process of all who enter your corridors. Second, find those individuals/organizations who will advocate for you and support your work. There are good quality people who can help in moving forward. Whether it is moving the needle with administration or legislation, help those advocating for you to know the inner workings of what needs to be done. And last, don’t get discouraged because of being understaffed. You are being asked to do so much, but to the families of loss, they don’t know you are overwhelmed. They are in shock, and all they know at that moment is you are there to ease their pain and sorrow. Please, stay encouraged that you are on the front line of helping those who have lost their whole world.
Final Reflections
There are two aspects to this question: first, my hope is that Miles’ name will not only be remembered but also will be synonymous with bereavement care for all families of pregnancy and infant loss. To have my grandson’s name remembered for a selfless act is instrumental to what our family believes and what we set out to do. It was never about us but about the millions of other families around the world and in the past who have suffered immeasurably after losing a child. Second, my hope is that Miles’ and Miles’ Mission will be remembered as foundational. While there have been many other organizations who have done a number of amazing things in this area, we also know that Miles’ Mission helped to established a few things that are foundational to bereavement care: the implementation of the Stillbirth Prevention Day Law in Ohio, the standardization work within Ohio hospitals, and our 2.3 acre Miles’ Mission Memorial Park in Zanesville, Ohio. This, hopefully, will be a part of our legacy for Miles. Whatever else is said or done to recognize the work is left up to others. But for now, we are blessed and thankful to have been a part of what we are doing today.
One of the things that I have tried to share is that the work of Miles’ Mission was never about me. In all honesty, I have no real idea of what impact or difference I have made. I am a grandfather who lost a grandson, and a father trying to help his family, especially his daughter, as we navigated our grief. I do realize I have done some things, but to the depth or level of impact, that is left up to others to determine. My heart just wants to help other families and hopefully diminish the numbers of children being lost so other families will never have to endure such pain.
The work of Dr. Bullock and Miles’ Mission reminds us of the power of compassion and the change that is possible when people come together with a shared purpose. Their unwavering dedication ensures that families are met with dignity, choice, and comfort when they need it most. From all of us at CuddleCot, thank you for the profound impact you are making and for inspiring us every day.
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