My baby boy, Hugh was born via C-section. But when he was handed to me I jumped.
“What’s wrong with him?” I asked.
Everyone laughed at the silly woman all drugged up, but I just knew something was wrong. Everyone assured me that he was fine, his purple feet and hands were apparently normal and his bird-like chest was nothing to worry about. I’m a worrier at the best of times, but my gut was telling me to watch this one.
In the days that followed Hugh’s birth, I soaked up every moment. I was enjoying some time out from my two and four-year-old children, and knew the peace and quiet wouldn’t last.
On the fourth day in hospital, our paediatrician told me that he could hear a heart murmur in Hugh. He wasn’t sure how bad it was, but he’d need some follow up testing in the coming months to rule out anything major. My gut was still telling me that something was wrong, but my doctor didn’t look too worried so I tried to follow his lead. His breathing seemed off to me, but when monitored, he was fine. Still…
In the two weeks after bringing Hugh home, I took him back to hospital twice. I just couldn’t shake the feeling that something was wrong with him. Each time I was sent away. I was told the blocked nose and congestion he had developed was just a cold, I was assured he was fine but I felt physically sick. I was told to “calm down,” but my gut instinct was to persevere.
At around three weeks Hugh had started sleeping through the night. He was sleeping a lot and I found it hard to rouse him to feed him. My GP agreed with me (finally!) that something wasn’t right. We were seeing the cardiologist that afternoon and he suggested we mention any concerns to him. My heart broke. I was satisfied that someone could see what I could see, but I was terrified.
By time we saw the Cardiologist that afternoon, Hugh was very sleepy and very pale – in fact he was grey in colour. The Cardiologist told us that his heart rate was 277 BPM, he was in SVT (very fast heart rate) and in heart failure. The cold diagnosed in hospital days before was in fact heart failure.
We were met at the Emergency Room by our paediatrician who swiftly moved Hugh into Resus to try and save him. It was almost impossible to get a line into his collapsed veins, and a bag of ice was smothered over his tiny face to shock his heart back to a normal rhythm. My husband counted twelve people in the room. Twelve people working on my tiny boy. Again, my heart broke.
Hugh had six more SVT episodes that night, his heart rate reaching as high as 322BPM, and he was transferred to Sydney via helicopter in the early hours of the next morning. I’d never been in a helicopter and I hadn’t planned on ever going in one. It was tiny in there - packed in with all of the equipment needed to transport critically ill children.
Hugh was diagnosed with Tetralogy of Fallot (TOF) and required major open heart surgery. Those days after his diagnosis are a blur -so surreal.
Paediatric ICU is horrendous, heartbreaking and soul wrenching. It’s not only having to deal with the life changing diagnosis and prognosis of your own child, but the sitting in silence surrounded by other parents facing their own devastating situations that breaks your heart again and again.
We prayed Hugh got stronger each day. I remember there were times when he’d have some type of complication and overwhelming dread would consume us. Most of this time I was on my own, Brett visited when he could and my other boys were cared for by friends and family. My shit was held together by some kind of higher power. I was on auto pilot. A strange calmness took over me and I was able to exist because my brain didn’t totally accept what was happening.
I’ve never known vulnerability, sadness or loneliness like that time.
We were bombarded with medical information, the risks and complications explained over and over, each repeat chipped away at what strength I had. The risks seemed endless. Not one of the people who had gone through this with us mentioned his chances of survival - apparently there’s no room for hope in those meetings. I fell apart in one and asked the surgeon if Hugh had any chance of surviving.
“Was there any point to doing the surgery?”
The surgeon looked at me quite confused and said very calmly, “Yes of course! I do these all the time”.
Hugh’s scans showed the severity of his condition. TOF is a condition that has four main problems one of those being a significant hole in the heart. The 1cm hole in his heart was so large in the scale of his heart size which is about the size of a newborn’s fist (so tiny), we found it hard to actually see the four chambers, it just looked like a big black blob. He looked really healthy, he was big and chubby and not blue in colour which is typical of TOF babies.
I was able to finally stop trying to convince people that something was wrong with Hugh, my instincts got a well earned break.
We took our baby home on a series of very expensive medications. He had a couple more episodes of SVT, alerted to us by the bark of our Labrador. When we checked, we could see Hugh’s little heart bouncing at quite a pace. We’d call an ambulance and head into the hospital.
I was stuck at home with the three boys for those weeks leading up to the surgery. They were going crazy, I cried a lot and once again I felt loneliness that I’ve never experienced in my life. Poor Hugh would smile and I’d just bawl my eyes out!
One nurse said to me, “One day this will just be a story you tell.”
That was the first time I felt like this would be over one day, and it gave me hope.
At 11 weeks old, Hugh endured a seven hour open heart surgery. The morning of the surgery was surreal, but I was so relieved it had arrived. It had been postponed once and I just wanted to hand him over as healthy as I could so that he had the best chance of survival possible. I’d done my job and now it was all in God’s hands.
Afterwards he was puffy but looked pretty amazing considering. We’d been warned about everything we’d see so nothing really came as a shock. Each day meant removing a tube, reducing his sedation and Hugh becoming more alert. Because he was intubated, he couldn’t make noise when he cried. I’d sing to him, and despite the horrendous quality of my singing voice; a verse of Beautiful Boy would settle him quickly.
After about a week in ICU and a few days on the ward we were allowed to bring Hugh home in time for Christmas. I’ve never felt so blessed in my life. We walked out of there with our three boys all well and my heart just about exploded.
Life went on and Hugh is now four years old and full of life. It took its toll on us and I was an emotional mess for quite a while. I had trouble remembering Hugh’s birth and the weeks after for a really long time, I guess I was in some kind of shock. I know some people can bounce back from things like this (some people have even felt the need to tell me that) but it took me a long time to work through what we had gone through and I knew I needed that time and make no apologies for letting this consume me for as long as it needed to. I can tell this story now without having to live the pain again, but that’s taken some effort to get to that point.
We’ve been told just to treat him like a normal little boy, but we spoil him rotten and we’re not sorry. Everyone who meets Hugh says there’s something special about him. All of my boys are special, but Hugh has an indescribable way about him. He has a lot of love to give.
He may need more surgery in the future, but there’s no way of knowing that now. We’ll cross that bridge if we have to when that time comes. For now we just enjoy our little blessing, and I thank God every single day that I got to keep him, I really can’t believe that we were so lucky.
Now it’s just a story we tell.
This post originally appeared on The Balanced Vessel. You can find the original post here.