When we arrived in Edmonton, we met with dozens of doctors, surgeons and social workers; it was all a blur. Drew’s dad drove up with us and after we tucked her in, he watched over Kate so we would be able to go straight to the hospital. We were greeted by the Neonatologists, the Transplant specialists, the surgeons and the social workers. This type of thing doesn’t happen typically so everyone was in a degree of disbelief.
Although I had experience in the NICU, we had briefly reviewed fetal circulation and congenital heart defects. But our scope at the Peter Lougheed Centre wasn’t surgical, it was delivery and support. I had worked casually at the Children’s when I first graduated so it wasn’t fresh in my memory.
My husband did well in his crash course in Cardiology but looked to me for guidance about what was happening to our baby. What could I tell him? That everything I saw was awful? That when I saw the doctors and nurses faces, I could see the worry in their eyes? I could easily interpret what they were saying and knew it wasn’t good.
We were able to get into the Ronald McDonald House Northern Alberta after a few days of hotel life and that became the safe haven for our family. Kate had all she could ever need and we had a place for us to be a family. Meals, play spaces, quiet rooms, kindred spirits. No one expected you to be super friendly or make small talk if you didn’t want to. We were all tired and worn for the same reasons, our sick kids.
And then it was time. Sam was 13 days old and finally stable enough for his first open heart surgery. Kate came and kissed her brother that morning. This was her first time seeing him since he was at home with us. As much as I worried for Sam, I also worried for Kate. None of this was normal, none of this was okay and none of this was her fault but she would bear as much of the burden as we would as Sam’s parents. Kate, at times, could be a challenging little person before Sam was born and I worried about how she would cope. How we all would cope.
We were told to wait by the giant fish tank which is between the OR and the ICU. I grew to hate staring at those fish. So I learned to cope by spending hours researching everything I could about HLHS and congenital heart disease. I learned about the mortality rates, the risk of complications, the outcomes. I learned HLHS babies born before 1980 were typically offered compassionate care as there weren’t any viable options for them. I learned that there was still so much unknown about HLHS hearts and how to help these kids. I silently prayed that the surgeon would be able to save Sam in some way.
He came out of the surgery 6 hours later and was stable.
This was when we discovered just how tenuous Sam’s condition was.
They needed to leave his chest open for the first few days post op to ease the pressures from swelling in his chest and in case they needed to go back in quickly. Cardiac arrest was common after such an extensive surgery. There were coolers at the end of the bed with bags of platelets and other blood products in case he hemorrhaged or need an ECMO setup. He still had wires connected from his heart to a grey box on his bed in case his heart went into an arrhythmia and needed pacing.
Babies with Sam’s condition were most vulnerable during this Interstage period. They needed constant monitoring at all times a large majority, anywhere from 45-75% die from complications. So we were educated in doing daily weights, NG feeds, frequent oxygen saturation checks. Because if things went wrong, and they often did, it would be quick.
Sam had multiple complications; a chylothorax, a clot in his internal jugular, a wound infection and terrible withdrawal from all the opioids and narcotics he was on. It was weeks before he was extubated and able to cry out loud again. I stayed for rounds every day, made my notes in my own chart as I knew that I wasn’t processing any of this and would never remember the details that would become so important to know.
Drew and Kate headed back home to Airdrie as Drew needed to go back to work and Kate was starting preschool. I drove home each Tuesday and Thursday to take her to preschool and then would drive back so I would in time for rounds. It was overwhelming for me but so important for both of my kids, I needed to be there for both of them.
Sam finally transferred back to Calgary and I could now spend nights sharing my time between my whole family. I could see Drew when he came to meetings there; I could drive home to see Katie while Sam slept. The hours spent driving across Alberta had to replace all the sleep I was losing.
We spent months afterwards in hospital. Sam had even more complications and because Airdrie was far and without any adequate pediatric healthcare or support, it became the safest place for him.
So ACH became our home in more ways than one. I remember walking downstairs a few mornings in my pyjamas to get coffee and breakfast and thinking, “Nope, you don’t get to judge me, my sweats or my messy hair. I live here, I sleep on those crappy beds, I only eat cruddy cafeteria food so I am more than entitled to walk these hallways in my slippers.”
Kate would come and spend days here with Sam and I while Drew worked.
She learned to know that the people in the red vests were safe and would take her to play all over the hospital.
She learned that she could make wonderful crafts out of the medical supplies in our room. She learned that if she was quiet and behaved during rounds, she could choose a treat from the box of goodies I kept in the drawer.
She learned that there was a clown named Sparkle who came to visit and would make her feel like the most important person in the room.
She also learned to put on her headphones when lab came around so she wouldn’t have to hear Sam scream.
She learned never to touch any of the tubes or lines that were attached to Sam.
She learned how important it was to make sure her hands were clean at all times.
This is when I saw how much this way of life would affect our simplest interactions. There would no longer be any “normal” elements to our lives. We would all be affected/afflicted in some way.
I realized that both kids needed to learn how to cope with what would be our day to day lives. Sam would most likely grow up within these halls and that meant so would Kate. I had already seen behavioural changes in her and was afraid it couldn’t be helped or avoided. But I could support her, listen to her and try and normalize it all with her.
So I became a big advocate for early intervention for their mental health. I had read so many articles and studies on how adverse childhood experiences can affect these kids. Medical trauma was not a much-studied subject, especially in children.
Before Sam came home, I remember crying to our team of doctors after a two day pass that it was like taking home a brand new baby and having nothing ready. It wasn’t the crib or diapers; it was the medical supplies, the monitors, the meds. It takes some mental preparation to bring home a little person for the first time. You slowly get to know each other and finally discover that you are capable of doing this parenting thing. But we couldn’t. It wasn’t easy in any way, shape or form.
But I didn’t even have time to figure out his home medication and feeding schedule.Sam was first discharged in November but caught a cold and we returned to ACH in two days. At that time, he needed 24 hour oxygen and we found out he needed the next operation sooner than later.
So we packed up for Edmonton, this time knowing a bit more of what lay in store. We made arrangements for the RMHNA, for Drew’s mom to take care of Katie while we were there.
It was terrifying to go back to the place where so much had happened. We all were suffering from PTSD and we were constantly being re-traumatized. There was no end in sight, no definitive future and so there wasn’t much help to be given.
But we made do with what we had. We got Katie excited about staying at RMHNA again, talking about the Magic Room and all the fun people there. We let her pack her bag. It was stuffed full with toys, bursting at the seams. I still laugh when I think of it.
Despite her having to celebrate her 4th birthday away from all our family and friends, we would have a huge party with the people at the house and have everyone send her Happy Birthday videos. I still have all the videos tucked away. The best one was the staff on my old unit, singing for her amongst all the babies.
We made sure Katie could be a part of Sam’s experience because I knew the relationship between the two of them could help carry them through all the adversity they would face. We told her that no matter where we were, even if we couldn’t see each other, we would always be a family. And that has stayed our adage throughout our journey.
Sam went for the second stage surgery, the Glenn, when he as 3.5 months old. He was just developing the most wonderful personality, laughing and grinning. This time it was so much more difficult, as this time, I loved him truly. I barely knew him before and this time, I wasn’t just handing my newborn off to have open heart surgery, I was sending off my son.
The surgery was more complicated. He did well initially with the prep for his surgery taking longer than it did to get all his lines in. Then within 24 hours, he developed a serious clot and they needed to go back in to remove it. He had recovered quickly and this time we actually made it out of ICU and up to the unit. But once we thought we were in the clear, a diagnostic test called a heart catheterization showed his Aorta had almost fully occluded, and he needed another emergency surgery. This recovery took a lot longer than before as there had been so much damage from all the quick re-entries.
But eventually, we were stable enough to be sent home. We were elated but the only problem was, the wanted us to transfer home on Christmas Eve. My biggest worry? How to tell Katie that Santa would find her no matter where she was. But with only a few hours notice, Sam was flown, we packed up the room and drove home in a snowstorm.
That night, while Katie was finally sleeping and I was at the hospital with Sam, Drew put up our Christmas tree and decorated the house. It still took weeks for us to be discharged but we finally got there.
Jan 18 2014, we arrived home for good. Well, sort of.
Ever since that initial discharge, Sam has been admitted at least once a month for the past 3 years, not to mention at least 15-20 appointments per month. We’ve had to take too many ambulance rides into Calgary to count. We’ve discovered how much we depend on the kindness of our neighbours and strangers. We’ve come to realize that the state of health care, both physical and mental health, in our small town is under great duress and needs drastic changes.
We acknowledge that our children have suffered a massive amount of trauma; physical, psychological, emotional, and we are very limited in the resources we can access to help them cope.
The thing is, we are getting so good at saving lives, the technology is unbelievable and is still advancing. But as a health system, we have not caught up with providing the emotional and psychological treatment necessary to cope with these extraordinary lives.
Our daughter was diagnosed with depression, anxiety, and PTSD at the age of 5. Sam had shown multiple fears and aversions related to anything medical or hospital. But we have worked hard on addressing the problems and helping him see beyond the pain and discomfort. He now loves going to the “hosable” to see his people because we use the tools given us by the mental health professionals we’ve worked with. He even asks for a sleepover every once in a while. I reply with an adamant “NO!”
Child Life and the support staff at ACH are truly amazing when it comes to helping the patients and families deal with this life. They provide lots of distraction and fun but there is a significant gap between what is needed for these families and what we have resources for.
I am a resourceful mom; I know that somewhere, someone must have had this problem before and has found a resolution, good or bad. But there are a lot of families out there that don’t know to ask the questions, to ask for help, or how to begin. And once you are in the community, it’s even more difficult.
Mental health resonates with every one of us. But there is a significant population of people who have been overlooked because we assume they have the help already. They don’t. I hope with the heightened awareness of Patient and Family Centred care that helping the whole family deal with not just the physical outcomes but the emotional and mental outcomes can be a focus of professionals.
I will never return to nursing. Some people have said that because of my experience, I would make an even better nurse now, more compassionate. But I can’t.
But I can’t. I suffer from a form of PSTD that is continually renewed and reinjured on a regular basis.
I’ll never be able to hold a stethoscope to another heart again without hearing my son’s incredible heart murmur. Measuring pain and suffering takes on a whole new dimension when it’s compared to that of a tiny, wordless infant. My frame of reference about what is truly important in life will forever be guided by what my family lived on for months, which was horrible cafeteria food and the support and love of one another.
But I can use our story to help others. To encourage parents who are at the start of in their journey, to guide those that are frustrated by the systems in place to help us, to enlighten those who are unaware of the complexities of this medical lifestyle and hopefully, to help incite change in where status quo is no longer enough.
We are lucky. Every extra day with Sam seems as if it has been stolen back.It’s been borrowed time from the minute we first brought him through the doors at ACH. We are constantly amazed by what our little people can accomplish, what they endure and how they still embrace every bit of this crazy life. We can get so busy with therapies and appointments but when I see how far we’ve all come, I am in awe by how resilient these little people are. I only hope we can do right by them. They deserve all the love and resect that we can give them.