Noah’s Story
Amy Trojer is Noah, Hudson and Leo’s Mother. She is a nurse and she shares her story of loving Noah who lived for just 12 days. Amy and her husband made the empowering decision to transition Noah’s care to end of life after his care team advised there was nothing more they could do to save him.
The Birth
Our second baby boy was perfectly planned after months of back and forth deciding whether or not we should have more children. See we already had one little boy who we adored more than anything. I always had this fear of not being able to love another child as much as I loved Hudson, our first. Spoiler – I was so very wrong.
It sounds very ‘woo woo’ I know, but I just had this feeling he wasn’t okay and another even stronger feeling that we wouldn’t get to keep him.
I was induced at 41 weeks after a very standard pregnancy. No complications arose, but from 40 weeks onwards I noticed his movements had slowed down and we chose to induce labour to be safe. I heard people say that mother’s intuition is strong, and I never knew truly what that meant until my pregnancy with Noah. Despite having no issues, there was always this gut feeling within that told me otherwise.
It sounds very ‘woo woo’ I know, but I just had this feeling he wasn’t okay and another even stronger feeling that we wouldn’t get to keep him. That feeling kept me from having a baby shower, from getting too excited, from preparing his nursery too soon. It kept me from becoming too attached. I would tell my husband all the time that it just felt wrong.
Well after a fairly quick induction which included a very helpful epidural, Noah James was born into our arms. Immediately I fell in love. So different to my first birth, where that love feeling took a bit longer. I adored this baby from the moment I saw him. He had his daddy’s eyes, his brother’s nose and a head full of gorgeous dark hair.
After a few minutes of holding him in my arms, he was struggling to breathe. He was quickly taken off me and the doctors and nurses gave him some oxygen. He was then taken to special care nursery where he stayed until ultimately being transferred to the main children’s hospital in Perth.
Things like this don’t happen to people like us
The Diagnosis
When we transferred to the children’s hospital I was in an absolute state of shock. Four days prior we were having a baby, we were excited, we weren’t broken. It’s as though all those feelings I had during pregnancy were validated. I was right, my intuition was right. But I never wanted to be so wrong in my life.
I was right, my intuition was right. But I never wanted to be so wrong in my life.
“Things like this don’t happen to people like us” is all that was rushing through my head. I understand now how privileged and entitled this sounds, but at the time, nothing like this had happened to us. Life was smooth, life was easy. Until it wasn’t.
At four days old after spending sleepless nights at the hospital I got a call from a Neurologist who casually told me on the phone that she believed Noah had OTC (Ornithine Transcarbamylase) Deficiency. This is a genetic X-Linked metabolic condition that is usually inherited by the mother. Of course, at the time I knew nothing about OTC deficiency, even being a nurse I had never heard of it.
I franticly googled (highly don’t recommend) while we drove to the hospital. I was flooded with optimism. I thought if we had a diagnosis, we could have a cure, or at least a management plan. The days prior to his diagnosis, Noah had been having regular seizures, respiratory distress and he was intubated in the NICU.
OTC Deficiency is quite rare, it’s estimated that 1:80,000 people will have it. In your liver, there is an enzyme called OTC which helps breakdown and remove nitrogen during metabolism. When nitrogen can’t be removed from your body, it builds up into the form of ammonia, which is highly toxic especially to the Central Nervous System. This can cause symptoms which vary depending on the severity of the deficiency, but includes nausea, vomiting, respiratory distress, seizures, lethargy and coma. The longer the ammonia is left untreated, the greater the effects are on the nervous system.
We were reassured that although brain damage was likely, it would be minimal. They were so wrong.
Noah’s ammonia level at day 4 was 400 (the normal level should be below 50). He was on the right medication, he was under the best team we could find, he should have been okay they said. We were reassured that although brain damage was likely, it would be minimal. They were so wrong.
We went home to get some clothes and spend a bit of time with Hudson, who at this point was really struggling. His whole world was turned upside down. He was three years old, and it breaks my heart thinking about what he was feeling during this time. 30 minutes after being home we had a call from the hospital, Noah’s ammonia level had increase to 2,800.The nurse was panicked, I could hear it in her voice.
Why are we treating a dying baby?
He started dialysis to try and clear the ammonia, but ultimately, nothing worked. His MRI when he was 8 days old showed “catastrophic widespread brain damage”. The neurologist spoke in this monotonous tone, like she was reading us menu options and like we really understood or had capacity at that time to process what she was saying.
At the end of the day, it meant that every bit of Noah’s brain was severely impacted, except his brain stem which is responsible for breathing and regulating your heart beat. This was obviously heart-breaking beyond belief. Our souls were destroyed.
End of life care
We were told our baby was terminal. Even if they managed to lower his ammonia, every time he would eat, the same thing would happen again, he couldn’t metabolise even the smallest amount of protein. His only hope of survival would be a liver transplant and due to the level of brain damage he had received, we were told he wouldn’t even be considered for one. I remember vividly asking the medical consultant – Why are we treating a dying baby?
At this point, to me it seemed unethical to keep treating our poor little baby.
I was and still am a nurse, specifically a cancer nurse. I have worked closely with dying patients and their families, I’ve helped facilitate palliative care. At this point, to me it seemed unethical to keep treating our poor little baby. He was full of tubes, lines and catheters.
We had only held him twice in his short life. He deserved more. He deserved kisses, cuddles, to feel the sunshine on his skin. We deserved to hold him closely, feel every little crevice in his perfect face and listen to each and every breath.
So when we made the decision to withdraw treatment and provide end of life care, to me it felt right straight away.
We were told that likely after withdrawing treatment Noah would pass away within a few days. It was a strange feeling to know your child will die, it’s not one I would wish upon any parent. Every moment was heartbreaking, tragic, beautiful and something I hope I never forget.
Noah was mostly asleep, in a state of coma most of his time, he was able to breathe on his own though and we spent the days cuddled up in a hospital bed, together with Hudson. Reading books, telling stories, singing him songs, whispering in his ear. Just enjoying him, while we still could. On the 4th of December at 8:10am Noah peacefully passed away in our arms at 12 days old. For the very first time in my life, my heart was completely broken.
Life after Noah
I walked through a shopping centre just days after Noah died in utter disbelief that the world was still functioning. People were in their own worlds, yet ours had just completely crashed just days prior. Didn’t these people see us? Couldn’t they tell? Why do they look happy? I was filled with utter resentment for everyone. How dare they be happy.
The resentment stayed for longer than I like to admit. I was angry at everyone.
People sent flowers which at the time I loved, but in utter rage one day, I threw them all out.
What were flowers suppose to do? Bring back my baby? Make me happy? The resentment turned into pain and sadness which also hung around for a long time, in fact all these emotions still make a comeback from time to time, even almost three years on.
What I’ve learnt since, is that these feelings are all a part of grief. It wasn’t until my husband actually said to me “We’ve experienced a huge trauma” that it finally hit. That was just the right word for it. Trauma. We were pregnant, we had a baby, we lost a baby. All in under two weeks. I was hugely, and still am hugely traumatised by it. Babies aren’t supposed to die. You are supposed to get them forever, your children are supposed to out live you.
My advice
If I could tell any parent out there who is searching online for help or reassurance I would say that your feelings are valid. All of them. The anger, the hate, the shame, the resentment, the pain, the sadness, the relief, the hope. All of them are real, and all of them are important in living with and recovering from trauma.
Feel it
Life keeps moving, you still need to show up each day. So feel whatever it is you’re feeling at that time, don’t supress it. I promise it will pass. I promise that it won’t always be this hard. I promise you won’t always feel this sad, that soon you’ll laugh (a real laugh) again. I promise time does help, that although nothing can take away the pain, the pain is felt less often.
Say their name
Your babies and children will never be forgotten, they are with you and everyone that loved them forever. Say their name often, even when it’s hard. Their stories deserve to be heard and you are the best person to do that.
I also told people that it was okay to talk about Noah, I wanted to. I wanted his name spoken, I wanted to tell his story – I still do, which is why I’m here today.
I also told people that it was okay to talk about Noah, I wanted to. I wanted his name spoken, I wanted to tell his story – I still do, which is why I’m here today. Although it’s incredibly difficult at first, speaking about your child helps.
Find what works
If you feel alone in your journey of grief, I beg you to find someone trusted whether that be a friend / family member or professional you can turn to when you need to talk. Writing down my feelings also helped, pen to paper. Especially on those harder days when I didn’t want to face anyone. Exercise kept my mind busy – something I despised prior to Noah. It eased my anxiety and early on gave me a healthy distraction.
Meditation is something I swear by, not at first, I wasn’t in the right head space. But on the days where you feel able, focus on your breathing, connect with your baby, remind yourself of all you are grateful for. At times that may feel impossible.
Celebrate and acknowledge them
Find small everyday ways to remember your child, it has helped me to keep him feeling apart of our continuously moving life. We burnt a candle at Noah’s funeral that we light when we can especially on special occasions, the smell reminds me of him.
We send off a balloon every birthday with a note to heaven from his big brother, along with a birthday cake - accompanied by a very out of tune Happy birthday song sung with love.
We have his pictures everywhere, I play his music when I especially miss him.
Trust your intuition , be disagreeable
Our children are reliant upon us to make the best decisions for them and their wellbeing. Trust your intuition,
For parents who are battling the difficulties in having a life limiting diagnosis for your child – be their advocate. Get a second opinion if you don’t feel right about it. Our children are reliant upon us to make the best decisions for them and their wellbeing. Trust your intuition, I really didn’t listen to mine throughout my pregnancy and it’s my biggest regret. Demand that extra scan or test, be assertive. In a world where women especially are largely brought up to be agreeable, I’m asking you to not be. Don’t agree to anything that doesn’t feel right. You know best, truly.
Amy lives in Western Australia with her husband and two sons. You can follow her or make contact on her Instagram @twelvedaysofnoah