Seven years ago, Matt and his wife Emily began a heart-wrenching journey of loss, healing, and hope after their newborn son Carter was diagnosed with a life-altering brain injury.
This episode is incredibly intimate as Matt shares the experience of deciding whether to keep his son on life support or not, and the impact his son had on those around him.
Listen in to Matt to learn:
- How to turn tragedy into a gift
- What it takes to overcome the loss of a loved one
- Why conventional medicine doesn’t always have all the answers
Can you share a bit of Carter’s story with us?
The book begins with my wife and I taking our newborn son Carter to the doctor for a normal, routine checkup since he wasn’t feeling well.
We went from doctor to doctor with each doctor thinking that it’s no big deal, yet none of them could pinpoint what is wrong.
Each doctor refers us to another doctor until we ended up at Children’s Mercy Hospital. At that point, the doctor looks at our son Carter and believes that he’ll be treating Carter for the worst case scenario, although he doesn’t really think that worst case scenario is applicable.
That’s all we’re told.
I end up going home thinking everything is just fine while Emily, my wife, and Carter stayed the night at the hospital.
Worst case scenario is meningitis, mind you prior to that, I didn’t even know what meningitis was, but the worst case scenario is that Carter would be at the hospital for a week being treated for meningitis.
But then I got a phone call the next morning from Emily. She’s screaming into the phone saying, “He wasn’t breathing, he’s not breathing!”
The doctors rush in and take him away. The next thing I know Carter’s had a seizure and is now on life support.
As I raced back to the hospital I’m thinking the worst. One minute my son is feeling a little unwell, and now I don’t even know if he’ll be alive by the time I get back to the hospital. When I got there the doctors told me that Carter had flatlined for long enough that the lack of oxygen to his brain had caused severe brain damage.
I was told that he was on life support and that the doctors didn’t know if he would make it. It almost sounded like the doctors thought he was brain dead.
Right then and there my wife and I were given a choice: leave Carter on life support or take him off of life support. Well, that’s a really, really, really, unimaginably difficult place to be with a newborn baby.
So, Emily and I we went outside alone we prayed. We digested what the doctors told us and we tried to understand it. We tried to figure out what the right thing to do was.
Was he brain dead?
Should we take him off of life support?
Or, should we keep him on life support?
How did you make such a difficult decision under so much pressure?
We decided that it wasn’t our decision, and if Carter was meant to live he would live. We believed if Carter was meant to pass away then that was God’s decision, but we still needed to understand one more thing and that was, was he really brain dead?
So we went back to the doctors and we asked them, “Are you saying that our son is brain dead and what does that mean for his wellbeing? Is he going to be a vegetable?”
The doctor said, “No he’s not brain dead. He has had severe brain damage. I can’t tell you exactly how much damage at this time, but we can tell you that we believe he’s going to be on life support for a very long time.”
“He may not make it, and if he does survive, and if he is able to get off life support, he will have many limitations and he will never be able to function like a normal person can function.”
With that information, Emily and I made the decision to keep him on life support.
“If our son, Carter, was meant to live God would have him live.”
What happened to Carter after you decided to keep him on life support?
Unbelievably, the very next day the doctors came to us and said, “You won’t believe this, but Carter is now able to survive off of life support.”
It was truly, unbelievable. We knew that God wanted Carter to live when we heard this news the next day.
I can’t tell you what it felt like to get that news. We had just been given a miracle, and our prayers had been answered.
But almost immediately after getting that news the doctors came to speak with us and said, “Well, we’ve done a CAT scan of your son’s brain, and he has severe global brain damage to 40 percent of his brain.”
“In one moment we had been witness to a miracle, and the next moment the doctors had quite literally come and crushed us. It was an emotional rollercoaster like you could not imagine. Looking back on it, I think God was testing our faith.”
We would witness miracles happen to our son. We would see him doing things that the doctors had said he may not be able to do. And every day that we witnessed a miracle, the doctors would come in and tell us something that would literally take us back into a world of fear.
It was crushing to a point that my wife, Emily, couldn’t even talk to the doctors anymore because it just filled her with fear and limitations.
She asked her sister Jennifer to be the go-to person for the doctors because it was too emotional for her.
“I knew that as long as we stayed and listened to what these doctors were saying, we would only see limitations for our son. I knew that as long as we stayed there, they were only going to tell us what he would never be able to do.”
What did you do to begin to rise above the limitations that were facing you and your family?
The reality was that our son had severe brain injuries, but we still had a choice. We could stay trapped within the limitations that the doctors were telling us, or we could go out and look for people that have been in a similar situation and have overcome this type of brain damage.
So that’s what we did.
We started searching the Internet looking for stories of hope; we were looking for possibilities.
Within a couple of days, we came across a video about a girl by the name of Elizabeth. Her family was in a very similar situation whereby Elizabeth was born with part of her brain missing and the doctors had told her parents very similar things to what they had told Emily and me.
We knew that Carter would probably never be able to see and that he may be deaf, yet Emily was told some of the same things, including that she would never be able to walk, yet here she was in the video dancing at her wedding.
“Here was a girl who had been told she would face severe limitations her whole life, but she had gone on to graduate from college and dance at her wedding.”
It was through Elizabeth that we discovered the Anat Baniel Center and other children like Carter.
How did the Anat Baniel Center change Carter’s prognosis?
When we first arrived at the Anat Baniel Center we weren’t sure that the doctors there would be any different from the ones we had dealt with before, but after meeting with Anat we could immediately see that she believed in what she did. She had created this center as a place for possibilities for children with severe brain injuries, not as a place of limitations
After that first meeting, we decided to move the whole family to Marin County, California to be closer to Anat and her team. We actually rented an apartment the same day that we first met with Anat. We were looking for possibilities instead of limitations.
Carter started having sessions three times a week, sometimes up four or five times a week, with either Anat or someone on Anat’s team. We also continued to meet other families with children with brain injuries and we discovered many different alternatives to pursue that our previous doctors hadn’t even mentioned.
We heard over and over again of how these children were presented with limitations, not possibilities, and how these children and their parents had broken through these limitations.
What we ultimately found at the Anat Baniel Center wasn’t just medical treatment, it was a community.
Can you tell us more about the community you found at the Anat Baniel Center, and how it contributed to Carter’s prognosis?
It was a community of parents that were like-minded and that were willing to pursue alternatives outside of the normal channels of modern medicine.
And while pursuing those alternative channels ourselves we continued to have breakthroughs with our son.
That’s not to say that Carter didn’t face challenges, but we were making progress along with the other children in our community.
It got to the point that when someone met Carter they had no idea that there was anything wrong with him. You would meet Carter and you would see his big blue eyes and you would see the smile on his face and you would hear his laugh; you’d literally fall in love.
He was the happiest baby; the happiest little boy you’ve ever met. To us, he was perfect.
In the end, we really did pursue any and every option we found that had any possibility of helping Carter.
How did Carter’s death impact you and your family?
Carter’s death came unexpectedly one day when Carter was 20 months old. Carter had a brain bleed and passed away. Essentially, his brain haemorrhaged.
It was completely unrelated to his original illness and came so unexpectedly that Emily and I were at a loss.
It came as a total shock.
For the past 20 months, my wife Emily had dedicated her life to spending 20 hours a day with Carter. She sought out alternative treatments day in and day out.
So Carter’s loss came completely unexpectedly. As a family, we were lost as to what the next step would be.
Emily became severely depressed, and I was struggling in my own way while also struggling with how to deal with Emily’s depression. But after a little while, I decided to look at Carter’s life in a different way.
“Six weeks or eight weeks after Carter passed away, I made the decision that Carter’s life was a gift. Carter had taught me so many things that I would never have discovered without his help.”
I saw all of his miracles.
Although his life was short, it was perfect.
What did you learn from Carter’s life?
Before Carter was born I was very successful, but I was also a very self-centered person. I prioritized myself over others. When Carter was born, my entire life became about giving our son a possible future instead of getting caught up in what was only important to me.
And I think that’s true of anyone who knew Carter. They became something bigger. They found the love of contributing to someone else’s wellbeing that was so much bigger than themselves. It was something incredibly powerful.
What issues did you face while trying to overcome the death of your son?
Emily was severely depressed and I wasn’t depressed anymore because I now looked at our son’s life as a gift. That created a lot of tension between us. Obviously, I was frustrated because she was still depressed over Carter’s death and she was angry with me because I wasn’t depressed.
It was a real challenge for our relationship.
This continued on for a year until I was finally ready to give up on our relationship. I was just so frustrated. I had pretty well turned away from Emily emotionally because she was upset at me for not being depressed. I didn’t want to be depressed but she couldn’t understand why I wasn’t depressed because she was depressed.
We were seeing psychologists but it wasn’t really doing much.
Then one day I decided to call upon a class I had taken years ago, and I took responsibility for my lack of being there for my family emotionally.
“I took responsibility for my being frustrated with Emily’s depression, and I created a new future for our relationship.”
As soon as I did that, something happened to Emily; she saw something in me that she hadn’t seen in a long time. She started to see a future that she hadn’t been able to see since our son had passed away.
Our relationship literally changed overnight. We cleaned up all of our frustrations with each other, and most importantly, Emily came to the realization that Carter was a gift. She chose to look at Carter’s life the same way I looked at Carter’s life and we were able to move forward from there.
At that time, we made a commitment and a promise to ourselves together that we wanted to share Carter’s life and what we learned from our time with Carter with others.
What legacy did Carter leave behind?
We wanted to create something bigger than Carter and bigger than ourselves that would be a gift to all of the other families that dealt with similar circumstances as us.
Emily came up with the idea to create a global web platform called ResourceND.com that would act as a resource devoted to alternative medicine and the possibilities outside of modern medicine.
But we weren’t quite ready to take that on at that time, so we decided that we wanted to try having another child. Shortly thereafter we were blessed with twin girls, our daughters Scarlet and Austin.
As time went on, we remembered this promise that we had made to ourselves and to Carter.
So, this year we launched our foundation, the Who Is Carter Foundation. The foundation is all about helping families get outside of the fear and limitations of modern medicine to create possibilities for brain injured children.
Can you tell us what you hope to achieve with your new book, Who Is Carter?
We published the book the same day we launched the foundation, 30 July 2017.
First and foremost, it’s not a sad book. Yes, it is a very emotional book, but it’s actually a book of love and hope. It’s a book of possibility and of discovery.
The reason I wrote this book is that I wanted to share our journey with other families, or anyone dealing with tragedy, whether that tragedy is a brain injured child or something else entirely.
“Emily and I want people to see that despite all the challenges that we faced, despite all of the limitation and fear that impacted our lives, we were able to set aside those limitations to create a life full of love and possibility.”
I want this book to be empowering.
In the end, Carter gave us so much more than we could have ever imagined. He was truly a miracle and you’ll see that in the book.