Intuition (noun)– a thing that one knows or considers likely from instinctive feeling rather than conscious reasoning. Synonyms- hunch, feeling, feeling in one’s bones (shut up!), gut feeling, inkling, suspicion.
At my final ultrasound before Hugh was born, my husband was late for our appointment. I wasn’t too worried as I had always spent plenty of time in that waiting room with a full bladder while the staff appeared to be working at a snail’s pace so I figured he’d get there in time.
Of course on this one occasion they were running on time and they weren’t shy in letting me know it. My sonographer wasn’t the kindest person I’d met, she informed me that she wouldn’t wait and had to get on with the scans. I didn’t mind, but she rushed the scans as if I had somehow inconvenienced her by not having a partner there.
The whole experience was horrible, there was no explaining body parts or sharing how exciting the moment was like I’d had with all my other scans. I asked if this was the scan where they checked the baby’s heart, “I’ve done all that”, she barked. Brett finally turned up just as I was being ushered out of the cranky sonographer’s room. I was worried, and I didn’t trust that everything was okay but I never like to make a big deal of things in these situations so I just left it and blamed Brett for being late.
When Hugh was born via C-section and handed to me I remember nearly jumping away from him while I was still on the operating table, “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 with my baby boy. 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 paed didn’t look too worried so I tried to follow his lead. I felt like Hugh was breathing in an unusual way when I was feeding him, and one midwife thought he was too so she put some monitors on him. He was fine.
In the two weeks that followed our return from hospital, I took Hugh to the hospital twice. I just couldn’t shake the feeling that something was wrong with him. His breathing was unusual and I often had a sick feeling when I was near him. I was sent away from the hospital and told that the blocked nose and congestion he had developed was from a cold and that I needed to “calm down”. My anxiety levels were off the chart. Everyone assured me he was fine but I felt physically sick, my gut instincts were telling me to persevere.
At around three weeks old 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, but we were seeing the Cardiologist that afternoon and he suggested we just mention my concerns to him. I felt my heart break. I was satisfied that someone could see what I could see, but I was terrified.
By the 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 fluid the doctor had identified as a cold 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 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. I didn’t realise how small they were inside with all of the equipment needed to transport critically ill children. At one point as they were getting everything prepared to leave, the pilot asked how much I weighed. I paused soap star style while I internally debated lying and possibly crashing due to the 15kg I didn’t declare, or being honest and shaming myself with my post baby weight. I fessed up, but not after a lengthy pause and a room full of people glared at me waiting for the magic number.
Our New Reality
Hugh was diagnosed with Tetralogy of Fallot (TOF) and required major open heart surgery.Those days after his diagnosis are a blur. It was so surreal, the very definition of it. 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.
I found some long term patients parents to be quite rude at first. I’d try to make small talk but they didn’t want to know. I was alone in Sydney with Hugh, about an hour away from my nearest relative and I was craving a friendly face and a distracting conversation.
After a few days I understood, it was too hard to take on everyone else’s stories, worry and sadness. It’s difficult enough to deal with the challenges your own child faces. And in ICU, things can change so quickly. I met one woman who had been there for nine months and I realised she would have watched so many people come and go, so many survivors as well as so much devastating sadness. She was protecting herself and I didn’t blame her one bit.
We hoped and prayed and 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, or Brett was driving up to see us some afternoons. My other boys were cared for by friends and family. I held my shit 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.
Because Hugh was in ICU he had one to one care. I was able to come and go as often as I liked to catch my breath. I walked up to the local mall and wandered aimlessly, usually in very uncoordinated clothing as Brett had been forced to pack my bags for me and he’s no stylist. I usually had red eyes and looked disheveled to say the least. One shop assistant followed me around suspiciously, and it wasn’t until I saw myself that I realised I looked like I was on drugs and possibly homeless.
We met with Cardiologists and surgeons and we were bombarded with medical information. I instantly regretted the lack of attention paid during science lessons in high school. His condition was explained to me and I took in what I could. The risks and complications were explained over and over, each time chipping away at what strength I had. When we met with Hugh’s surgeon, he again went through all of the risks of such a complex surgery. The list 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 that meeting and asked the surgeon if he had any chance of surviving, was there any point to doing the surgery? He 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.
Home to a Circus
We took our baby home on a series of very expensive medications. He had a couple more episodes of SVT, we were only aware because our beautiful labrador would bark and bark to alert us. When we checked Hugh we could see his little heart bouncing at quite a pace. We’d call an ambulance and head into the hospital. He nearly missed his own Christening because of a hospital stay, our beautiful paediatrician made it possible for us to get out in time for him to be baptised. I cried the whole ceremony and we all looked terrible, again, with no sleep and incredible worry hanging over us, it was a very challenging time. Our paediatrician put us into home isolation to limit the risks to Hugh. He couldn’t get sick as he wasn’t strong enough.
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 used to smile up at me 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.
We had tremendous support from so many people, it was at this time that we saw how amazing people can be. Knowing that people were praying for Hugh and for us meant so much. People sent daily messages of support, they bought things for my housebound boys to do and left it on the door step. We had flowers, fruit baskets and gift boxes. They called to give me a boost, and gracefully accepted when I couldn’t speak through my tears. I had experienced more love in that time than I thought was possible and it completely changed me forever. I’ve often said that so many people held me up at that time, if that experience taught me anything it’s to always reach out to those in need. Don’t assume that others will do it, just be there. Ask what you can do and throw so much love at people that they don’t have any choice but to accept it. They might need space, but just let them know you are there. That’s all the human stuff that life is about.
At eleven weeks old Hugh endured 7 hour long open heart surgery. It was right before Christmas so we were encouraged by the hospital staff to go and do our Christmas shopping rather than wait around at the hospital for it to be over. 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.
We walked up to theatre, and the doctors met us at the door. They reached out to take him. Time stood still. I had pictured us watching him go to sleep, but they just took him from us and promised that they would do the best they could. We kissed our boy and left him smiling and talking away to the doctors. I walked as fast as I could out of there.
I had always sung two songs to Hugh, Beautiful Boy and an Owl and Pussycat song I had learnt when I was teaching in London. As we walked away from our boy, not knowing if that was the last time we’d see him alive, there was a beautiful mural of The Owl and the Pussycat. I felt instant relief, but I turned to see Brett sobbing into the wrap we’d had Hugh in that morning. I just walked. We left and hit the shops in a trance. It really was very bizarre, walking around doing our Christmas shopping and pricing up coffee machines while doctors were trying to fix our son’s broken heart.
We headed back to the hospital and eventually we saw our boy. 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.
Hugh started having seizures on about day 3, it was awful to watch. He didn’t sleep for about 48 hours and it was discovered that he had been given the wrong amount of morphine so he was in a lot of pain and in withdrawals. Other than that there weren’t too many complications. Each time a tube or line was removed we’d be warned of the risks that he’d bleed or have trouble breathing or whatever else could go wrong. Because it was so close to Christmas we had celebrities visiting the hospital. I was bawling outside of ICU terrified that he’d bleed to death when they took his central line out, and I looked up to see some of the cast of Home and Away. It was awkward.
Hugh grew stronger each day and after about a week in ICU and a few days on the ward we were allowed to bring him 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 it’s 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. Each time we see his Cardiologist he hears something new, a new murmur or sound that he dismisses a little easier than we do. 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.