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.
Top Comments
Thank you for sharing this experience. I could relate to so much of this and found great comfort in reading the words of someone who completely understands. My son was diagnosed with his heart condition when I was 20 weeks pregnant so we were fortunate to not have to go through the awful experience you did but I could relate to everything you said about the hospital experience. It was reading your account of how you coped that now, five years on, makes me realise that I did the same thing. I think I did the same kind of auto pilot. Sometimes I feel like I still do just to avoid really thinking about what we went through. I still think about the families we shared the same space with in ICU but never really spoke to. You have nothing left over for anyone else but everyone feels the same and you just exist together.
The experience has had a huge impact on me in so many ways. My son is a happy, well adjusted little boy but I live with a type of nervous buzz inside me all the time that I can never quite explain. It was hard to let him start school, to hand him over to people who don't know how much he fought to be here and how much we cherish him.
I know I am blessed because he is here with us; I saw first hand, families who lost their precious children.
Thank you for your articulate, account of your experience and another reminder of the miracle I have asleep in his bed right now. Wishing you and all families of heart babies, all the very best.
Thank you for sharing this Claire. My son was born with TOF as well just over four years ago. He was diagnosed in utero which medically was great as it allowed for us to have a plan for delivery and care post-birth before his major repair at 12 weeks. In terms of the impact on my physical and mental health it was incredibly difficult. We found out at 20 weeks and the following 20 weeks were full of tests, scans, medical appointments, extreme anxiety and distress and upheaval as I had to leave my home to be closer to our capital city due to pregnancy complications and the rush of delivering a very sick baby early. We are incredibly lucky - our boy is healthy and well and we're coming up to four years since his surgery. His future looks healthy and full of potential but we also don't know if he will need more surgery in the future and there is always a sick sense of dread every time he sleeps a little more than usual, has a cold or his nose bleeds for no reason. It is hard learning to live with the anxiety of 'what if?'
Like you I have had times where I have found it really difficult to process what we went through as a family and articulate it clearly to those friends and family who are close to us. I still have moments - your story left me in floods of tears and took me back to those moments of sheer terror pre and post surgery. It is bloody difficult at times because whilst I know we are so, so lucky to have a healthy and happy little boy (and two other healthy children) the experience itself has reshaped who we are and our attitudes to life and different events.
Well done to little Hugh and to you as well - any child who has to go through so much and comes out the other side of open heart surgery is a tough little cookie!