The birth of our warrior

This Christmas will be a special one. It's the first Christmas with our family of five. We are complete, and as Theodore said “Mummy and daddy are not having another sister or brother Audrey! If you want one you will have to have your own baby!” my response is always laughter and sheer terror of the thought.

Our son Emmett was born on June 14th 2021 with Transposition of Great Arteries (TGA), which was diagnosed hours after delivery. Let me preface this story by saying that Emmett is doing very well and thriving at home right now. He is a perfect little six month old drooly baby that loves to eat and can almost make a whole avocado disappear in a few minutes, to which it will reappear in his diaper in the most heinous way.

TGA is a congenital heart defect which is not survivable past the first year of life without intervention. In TGA the two main large blood vessels that come from the heart and lungs are “switched”, which means instead of the left side of his heart pumping red oxygenated blood out to his body, it pumps it back to his lungs, and instead of his right side of his heart pumping blue blood to his lungs to be oxygenated, the blue blood is being pumped to his body. Which means his body/brains/organs do not receive red oxygenated blood. Clear as mud as they say.

He was critically transferred to SickKids in Toronto and had his Arterial Switch at four days of age. Emmett also had an intramural coronary artery, which means the main blood vessel that supplies blood to the muscle in his heart was extremely complex in its anatomy. As a result, Emmett’s procedure took over 18 hours, with 3 consecutive open heart surgeries back to back to back. As opposed to a routine TGA switch operation that may take up to 5 hours. Needless to say it was one of the longest and worst days of our lives. Emmett had to be placed on ECMO after his operation, which is a life saving machine that does the work of his heart and lungs. His little body was fully plugged into machines 10 x bigger than him and he did not look like our sweet little boy that we got to nurse, cuddle and kiss before his operation. His chest wound was also open and we could literally see his heart through a thin dressing used as a covering. It also made it clear to me that his heart was not beating. ECMO was essentially keeping him alive until his heart could regain the strength to beat on its own. On the 3rd day of ECMO after his operation Emmett suffered a devastating complication. He had a brain hemorrhage. During my time working in cardiac transplant centers and in Intensive care units I knew that few patients survived brain hemorrhages on ECMO. It is a catch 22 situation. In order to use life saving ECMO machines patients need to have their blood thinned by medication, which can lead to bleeding as a complication. If the bleeding occurs in the brain then usually the ECMO must be stopped and the patients are then left to fight on their own without the ECMO to support their weak heart. If their hearts are too weak, then they will not survive, but if they continue on ECMO, the bleeding in the brain will get worse and they will not survive. It is a horrible, inescapable situation to be in. Emmett was rushed to get a CT scan of his brain to determine the size and severity of the brain bleed, and I remember thinking that this may be one of the last days I would see my son alive. I was paralysed with uncertainty and must admit I was losing hope quickly. This is when I witnessed the power and resilience of Thu. As we sat silent on the bench waiting for the results, Thu quietly said, I’m going to pump breastmilk for Emmett now, he needs me. I did not say a word. I followed this force of a mother as she went about her routine of pumping, labeling, and storing her breastmilk for her son. I look back at this moment and I’m in awe of her strength. It was exactly what we needed to keep our hopes and minds from falling apart. As a side note, Thu has been truly a mother on a mission since Emmett was born. She checked herself out of Markham Stouffville Hospital 30 hours after her emergency C-section to come to SickKids to be by Emmett’s side. She couldn’t walk properly from the pain but still managed to stay with him everyday before his surgery. Thu definitely proved to me that mom strength exists and have no doubt in my mind that in the future she could lift a bus over her head if the situation required it.

CT scan results showed that the brain bleed was currently contained and was not life threatening. The plan was to try and remove Emmett off ECMO immediately, because we did not want the bleeding in the brain to become worse. I remember it was a big deal. The room slowly got more and more crowded and we were offered the privilege to stay by Emmett’s side whilst they performed a clamp test to see if Emmett was ready to be taken off ECMO. Again, Thu’s strength took over and she held Emmett’s hand and started to tell him he was a brave boy. In a room filled with about 20 people including doctors, nurses, and ECMO specialists, Thu was talking to our baby boy like we were the only ones there. I could hardly say a word but I kept hearing “You are so brave Emmett, you are coming home with me now. I need you Emmett, you are coming home with me.”. I saw the staff with tears in their eyes. It can not be easy working and witnessing triumph and tragedy of such extreme nature. What a different breed of person you must be to work at SickKids, and we are so so grateful for them.

Although Emmett was not able to get off ECMO that day, the amazing staff in SickKids CCU came up with a plan to continue ECMO but at the lowest possible dose of medication to thin the blood. It was now a waiting game. Emmett’s heart had to heal so that we could remove him from ECMO, and the longer he stayed on ECMO the ever present risk of his brain getting worse was there. To say this was a stressful time is an understatement. We were literally taking things hour by hour and scan by scan. It was at this point in time that I realised that I had not written an update to friends and family welcoming Emmett into the world. After Emmett was born I held off giving updates and writing the obligatory Facebook post because I think I wanted to wait and share all the good news at once, like “Emmett was born with TGA, surgery was uncomplicated and he is home now yada yada yada..” Emmett’s condition was now critical and I thought to myself if I don’t write an update soon my first letter or email will be a eulogy. That night I wrote a welcome letter, explaining Emmett’s TGA, his surgery and that he was currently in intensive care. It was full of hope, and happiness. I must admit it wasn’t how I was feeling, which was thinking that Emmett could die at any time, but I knew I wanted to celebrate him. I wanted to celebrate our son’s birth, I felt he deserved that.

It took 6 days on ECMO for his heart to start again. I remember it vividly because we could literally see his little heart forcefully contract and pound out of his open chest cavity. Emmett also opened his eyes to us whilst he was on ECMO and to this day I still remember him with the most intense look of determination and bravery I have ever seen. It was like he was about to rip out all his tubes, get up and walk out of the Intensive care unit to come home with us.

He looked like a warrior.

To be continued…