This has been the most difficult post I have published. Before you read it I want you to know that there is sensitive and controversial information about medical support. This is my personal opinion based on my experience with my son, I am in no way commenting on anyone else's decisions regarding medical support. I respect and admire anyone having to make "end of life" decisions for their child or loved one because I know the weight of it is more than anyone should have to bear.
There were multiple times during Will’s life that we were asked whether we wanted to continue supporting him or not. As I have said before, Will was dependent on medicine and technology to live and the question was when is it too much? Where is the line? How can you decided if there even is a line when it comes to your child? Anything and everything - that’s all I wanted them to do to save my baby. I’ve never had to make decisions like this before, so I don’t really know and maybe I’m totally wrong, but seems like the line might be more clear with someone older or someone who can make these decisions for themselves. Someone who has lived a long, amazing, meaningful, productive life and makes a decision to not continue taking medications or to stop ventilator support. I’m not saying it’s at all easy for that person or their loved ones, all I’m saying is that a child just seems different. My own child is different. He hasn’t had a chance at a long, meaningful life. We wanted to give Will the best chance possible and taking away his support felt like taking away his chance, especially when he kept living after so many people told us he wouldn’t.
The first time we had this conversation was after Will came off ECMO, December 13. The attending doctor told us that Will was in a “vegetative state” and suggested that we remove the support and just hold him until he passed. I didn’t have much to give, but something came from deep inside that told me to fight for my son. We talked to a lot of specialist that day and there were so many conflicting opinions. We hung onto two, the two we trusted the most, the two who were fighting for Will with us and willing to give him a chance - they were honest, but optimistic. The cardiologist said that while Will’s heart was weak, he still had hope that it could recover. The neurologist said that his brain stem was completely in tact and he was by no means in a “vegetative state” which opposed what we had heard earlier that morning (don’t get me started on the irresponsible comments from doctors). How could we not keep going?
On December 24, another doctor came in to talk to me about Will. She explained the condition of his heart and the effect that kidney dysfunction was having on his entire body. She also mentioned his brain bleed and how we don’t know what his neurological status would be in the future. It was the second time that someone asked us if we wanted to take away Will’s medical support and let him die. She said, “Will will not recover” definitively and expressed that while it was reasonable to give him more time, she did not think he was going to get better.
Sometimes it felt like it was less about whether Will could live or not but more about what his neurological status would be if he did. Like his life was worth less because he might not be a "normally developing" child. He might be severely disabled, he might never walk or talk or he might have severe epilepsy. Depending on who you talked to, the not so subtle undertone of conversations like this was asking if we would still want him if he had a disability or severe special needs. Of course we would. We wanted him no matter what. No one could say with any certainty what he would be like in the future and taking care of a child with special needs didn't scare me. All of January and February he was responsive, looking around and acting like a typical 1-2 month old. That’s not to say he wasn’t going to have any issues down the road, but it’s not to say he was either. We learned that baby’s brains are different than adults because they aren't fully developed and there was a chance he could have a full or almost full neurological recovery. Nurses told us that if they didn't know about his brain bleed they would assume he didn't have any neurological issues because he was acting so appropriately. There was a chance he could have some type of learning disability or ADD or a developmental delay. There was a chance for autism or cerebral palsy or a number of things that would classify him as “special needs.” No one knew, no one could ever predict what would happen, but there was that chance that he would be severely damaged, so would we still want him if that was the case or do we want out now before it’s too late?
We had this conversation with multiple different doctors and nurses throughout his time in the hospital. Before Will got a trach and every time his blood pressure was low we had this conversation again and again. Everyone we had this conversation with is human, which means every one of them has their own opinion, experience and viewpoint. Some were more callused and harsh than others, but ultimately we had to take in everything we were hearing and make our own decisions. The most helpful advice we received was from one of Will’s nurses and one of the wisest people I have ever met. She had a lot of experience, nursing and personal, and during one conversation with my mom she said, “there are things worse than death.” She said it as a passing comment, not meaning to be particularly profound, but my mom told me about it later because it had made an impact on her and she thought it might be helpful to me. I listened and agreed, but really didn’t think much more about it after our conversation.
In early March, some of Will’s last days, her words came back to me and rang so true. We live in a culture that is scared of death and often tries to prevent it or prolong it with medicine and technology. Death is scary if you don’t know what happens after you die. If your salvation in Christ isn’t secure, then death is uncertain and finite and scary. But if you have hope in Christ, if you believe that the wages of sin is death but the gift of God is eternal life, then death is not scary or finite and it’s definitely not the worst thing that could happen to you. I know that is offensive to some people, I know it’s not “politically correct” to talk about faith in that way but I believe the Bible is true and that’s what the Bible says. So yes, there are things worse than death, but life is still valuable and fragile and wanted. Will’s life was desperately wanted. There is nothing more I wanted then or now than to give him life here on Earth. I would have done anything. Removing medical support wasn’t a decision that could be made flippantly or out of fear and that’s why those conversations always ended with continuing what we were doing, prayerfully expecting that he would get better in time. After these conversations I would just pray that if God wanted Will He would just take him, I pleaded to not have to make a decision about his support. Every time we were confronted with this conversation, there was still the question of where is the line. When is enough enough? How do we know that if we didn’t try just one more thing that he would be saved? How did we know that if we didn’t just give him more time he could recover? How could we make a decision to take away his support and regret it for the rest of our lives, always wondering “what if…?” Each time we had this conversation it always ended with the decision to keep giving Will a chance. How could we let him go? It didn’t seem right. We had to fight to get him and we were going to fight to keep him.
On Christmas Day, Taylor texted this to me, “God has every day of their lives already recorded and He is not surprised by any of this.” That was another truth we had to hold onto, that despite all of the equipment, machines and medicine, God was and always will be in the One in control. It doesn’t mean that we can’t make decisions or think for ourselves, but God always knows what is going to happen before it happens. Psalm 139 says that every one of our days are already written. God knew Will’s first day and his last and every one in between. In the midst of such deep sorrow and inner conflict, this was comforting when we were being asked if we wanted to keep supporting him. We knew that if we had decided to withdraw support at any point, God could have intervened and kept Will alive. As we choose to continue support, Will still could have passed away even with all that help.
I’ve mentioned before a conversation I had with one of Will’s doctors who told me that we would know if Will’s time on Earth was coming to an end. I believed her, but I didn’t know how we would know and I hoped I would never find out. I prayed over and over that if God wanted Will that He would just take him. I prayed that we wouldn’t have to decide to remove his support or not try another procedure or not give him another chance. I didn’t think I could live with the uncertainty, constantly wondering what would have happened if we continued instead of stopping. I’m sure it was her experience that led her to say that to me because on March 6, I knew. Will had been having constant seizures for almost four days. They were coming from all over his brain and could not be stopped even with multiple, potent anti-seizure medications. His heart was getting weaker and he was having support added instead of taken away. As all this was happening I started to feel in my gut that this was it, this was his time. Of course I ignored it, he had survived so many times before and I wanted to believe this was just another bump in the road, another miraculous recovery. I wanted to believe that he would pull through. It might sound weird because even when I think about it today I have a hard time understanding it, but on March 6, I walked into Will’s room and I had an undeniable, overwhelming sense that Will was already gone. Yes, he was still breathing (with the help of a trach/ ventilator), his heart was still beating (because of an epinephrin drip and multiple other heart medications), but I looked at his sweet little face and I knew that he wasn’t there. God was gracious and it wasn’t really a decision because it was already happening. His body was shutting down even with all the rescue medications and machines and support being added. And the words that were spoken to me in December, the words that I didn’t understand, the words that were confusing and intimidating, they all the sudden were perfectly clear. You will know. And I knew.
This is one of the last videos I have of Will, taken on February 27. I love how he is peacefully dreaming and I loved when he did that nursing motion with his lips. The sound he makes when he is breathing is normal because of the trach, his breathing is not labored, it's just how he sounded based on his position or if there was a small leak around the trach. We liked to use his stuffed animals to position his arms and legs and snuggle up next to him so he felt comfortable and secure and the lullabies playing are from his nurse, Misty. He is swollen because his kidneys were still not functioning and the dialysis was not working as well as it had been to remove excess fluid. This was one of the last times I remember him sleeping peacefully before he began to decline. When I watch videos of him sleeping I just can't help but remember how incredibly sweet he was and wish so badly that I could peak in at him sleeping in his crib tonight.
Our mission is to glorify God by supporting children undergoing life-saving heart treatment and creating a caring community for their families in honor of our son, Will.
My name is Courtney Hughes and I am Will's mommy. I am happy that you are here to read Will's story and make a difference with us!