Finally, Honey was going to have the surgery she so desperately needed. As we packed our suitcases for the week, we said our goodbyes to Honey’s two big sisters, neither of whom realised that this could be the last time they see their baby sister. But I knew, and so did the rest of the family. Honey had already been christened – in part to give us comfort, but also to give Honey every bit of help we could.
The evening before Honey’s surgery, an anaesthetist visited our room. As with all the medical professionals we would meet that day, I will never forget his face. A very tall, kindly man with a soft, gentle voice – “I just want you to know that I will look after her as if she was my own.” Although comforting, it did bring home the enormity of Honey’s surgery. This was a massive, massive operation, and nobody could promise me that it would be alright in the end.
The next to arrive was the heart surgeon herself. A petite lady who was very respectful in the way she talked to us, and had the most delicate hands and long fingers (I’m sure I wasn’t the only parent to have taken the time to look at her in that level of detail!). She explained the procedures, and then took us through the consent form. It stated the reason for doing the operation – ‘Survival’. Seeing it in writing made all the risks pale into insignificance. What choice did we have?
During the night, Honey was very unsettled, her breathing worse than ever. The doctor who assessed her during those long hours said that she was now in an emergency situation, and it was very fortunate that her surgery was scheduled for a few hours’ time. At 8.30am, we went down to theatre.
As I remember this, my mouth is dry and my eyes are filling. I carried my baby girl into the anaesthetic room. Immediately she became upset. By this point Honey had been through so much discomfort, people prodding her and making her uncomfortable. I really believe that she was aware enough to know more was to come. They asked me to lay her on the theatre table and she screamed. They placed the mask over her face and she fought against it with every ounce of strength she had. I placed my face close to her and comforted her as best I could, until she slowly went to sleep.
As soon as she was under, I ran from the room and gasped for air. My husband and the nurse tried to comfort me, but I needed to have those moments alone – to draw on my inner strength and brace myself for the long hours ahead of us.
We chose to leave the hospital, and at the respectable hour of 10.45am, went to a local pub for a drink. After this we busied ourselves as we waited for the call, walking around Bristol, shopping for a suitable cuddly toy for Honey.
After 8 long hours, the Sister in charge of the Paediatric Intensive Care Unit (PICU) ward told us to go to the parent room where the surgeon would update us on the surgery. Honey would be brought there from recovery. It was then that we knew that she was alive. The feeling was, I imagine, akin to winning the lottery.
When the heart surgeon arrived and reported that the surgery had been a success, I had the overwhelming urge to fling myself at the doctor, which I did! The surgery itself had been more problematic than they had hoped – Honey had been in gross heart failure before the surgery, she suffered a massive bleed and went into bypass failure for 6 minutes (the maximum allowed is 8 minutes). Thankfully, after this hairy start, the medical team were able to continue with repairing Honey’s heart. Although she was still reliant on external pacing wires that are placed on the hearts of all children after open heart surgery as a precaution, the doctors were hopeful that Honey’s heart would regain its full rhythm over the coming days.
It was now time to see her.
I had asked some mums from the support group, Heart Families SouthWest, to send me pictures of their babies in recovery so I could be prepared. I’m very glad I did. As I approached her bed, the reality of what my precious baby had been through became apparent. She was in her nappy and had a big white dressing along the length of her chest. There was a thick plastic tube coming out of her left side, draining away any extra blood from the surgery site, and numerous pacing wires. Her face was half hidden with plasters holding in place a wide ribbed ventilation tube in her throat, and there was also a thin tube coming out the side of her neck, where the anaesthetic was pumped through.
I stood there, taking in her swollen eyes and sore little body, while the nurses buzzed around us, making her comfortable on air filled pillows. As I lightly kissed Honeys little head, she started moving, and throwing her arms up in the air. Her eyes started opening and I was relieved to see life in her little body. My relief was short-lived. The consultant came rushing over, asking what was happening. Waking this soon was not safe after such a massive surgery. Honey was literally moving herself down towards the end of the bed and it took four nurses to carefully hold her down. The consultant said that Honey had some amazing strength, as by rights she had had enough sedative to keep her asleep for hours yet. But for her own safety, he ordered that Honey be temporarily paralysed for the night.
During a child’s stay in the PICU ward, parents are not permitted to sleep by a child’s bed so, for the second time that day, I had to walk away from my baby when she needed me most.