I remember a doctor once saying that mothers who have concerns about their child’s health should always be taken seriously. Nobody knows a child as well as their mother. If something changes, mum will be the first to notice.

jenny0100Emma had noticed some issues with Jenny. Jenny had been sweating right through the night, breathing shallow, had a loss of appetite. Emma had been concerned. At each stage, though, nurses & doctors had told Emma not to worry. I was guilty of this too – not out of any sense of disrespecting Emma’s opinion, but because I was trying to reassure her. One doctor had said that they had heard something in the background in Jenny’s heartbeat and had requested a referral but she hadn’t seen anybody yet.

Two months before Jenny’s second birthday, in May 2013, she had a particularly bad cold. Really chesty and she was very lethargic. It was clear that Jenny had more than a cold. I phoned NHS24.

They went through the questions and got to the point when they asked me to look at her chest and stomach. When she breathed in, they asked, was there a hollow under her ribs? There was. This answer seemed to trigger something in the nurses’ knowledge and she arranged for me to take Jenny to the local hospital to see an out of hours doctor. This was about 6pm on a Saturday evening.

I got to the hospital and Jenny was almost unconscious. The doctor saw us and sent Jenny to the kid’s ward. They arranged for an x-ray and checked her over. They clearly weren’t happy with what they were hearing in Jenny’s chest.

The x-ray unit was a walk down the hall. I carried Jenny in my arms. She had the x-ray and we returned. I held her the whole way.

jenny0101She was in a nursery style bed while we were waiting the results. I would come to hate these beds. The sides came up like a cage. I can understand the reasons for needing them, but seeing Jenny imprisoned inside, ill, was a wretched sight.

I had to carry Jenny back around to the doctor. They showed the x-ray but it was meaningless to me. What they explained slayed me.

Jenny had a severe chest infection. It wasn’t getting better because her heart wasn’t working properly. She had heart failure. This, in turn, had resulted in an enlarged liver. She was utterly exhausted because her heart just wasn’t working properly. They didn’t know why.

I phoned Emma and tried my best to relay what I’d been told. There was nothing I could say in the way of reassuring Emma. It was all bad news. All I could think of was, “she’s in the right place”.

jenny0102She was admitted and an appointment was made with the Cardiac Unit at Yorkhill Children’s Hospital, but not until the following Tuesday.

Jenny was deflated. They found her a room. We stayed on a small foldaway bed at night and tried to entertain her during the day. By this point, she’d been diagnosed with double pneumonia. Time works differently in a hospital. You surrender to not knowing what’s going to happen. You can’t control things. There’s a point at which you have to just trust strangers to get things right. It’s horrendous. You’re a parent, and when your child is at their most desperate, there’s nothing you can do to make them better.

After a couple of days, the Jenny we knew started to come back. More chatty, wanting to play and even being cheeky. And laughing. That’s her strength, her laugh. She can’t stay mad or cry for too long. If you get down to her eye level and just look at her and pull a face, she’ll laugh every time. She can’t help it. She’s always two seconds away from a laugh.

We went to the Yorkhill appointment, again in ‘Hospital Time’. Anxious minutes in waiting rooms, tension when waiting on doctors to tell you anything. She was hooked up to machines, ultrasounds, monitors, cannulas, and she took it all in her stride. Didn’t complain at all.

jenny0103The diagnosis. A malformed valve at the top of the heart and a hole in the chamber in the middle. AVSD (atrioventricular septal defect). It explained the tiredness. Her heart was taking all of her energy because it was working so inefficiently. It explained her height. Her body couldn’t spare the energy to grow. It explained the night sweats, the lack of appetite, the lethargy, the inability to beat a cold. Emma had been right.

The problem had been present since birth and it was nobody’s fault. Just one of those things. She would need open heart surgery to correct it. Without the surgery, it would kill her.

Jenny’s pneumonia cleared up. The staff at the Royal Alexandra Hospital were just brilliant but we couldn’t wait to get her home. The dark cloud of the unknown never really went away.

The operation was going to be within the next few months, but it may be bumped if more urgent cases came along. It was bizarrely reassuring to know that it was not the worst it could be.

(Part 2 here)