‘I cried, and my head ached with shock’
It was only when a young paediatrician turned up at my bedside that I had the first inkling there was anything wrong. My second child had been born according to my carefully worded birth plan. She was perfect, healthy and very pink. I’d had a normal pregnancy and a natural delivery. Now, 24 hours later, it was time to go home. But instead of discharging us, the doctor started pushing the crib as fast as she could down the corridor to the special care baby unit.
I trailed alongside, rolling my eyes and thinking she was being hysterical. True, the baby hadn’t woken for her feed during the night. I’d been too grateful for a proper night’s sleep to complain. Feeling guilty, I’d consulted the post-natal sister. She shrugged, saying, “New babies are often very sleepy.” So that was OK, then. But she wasn’t sleepy, she was dying.
A specialist ambulance ferried my baby to Great Ormond Street hospital, leaving me holding a Polaroid picture. It shows her with a huge splint taped to her arm, keeping a drip in place. I kept wondering why they had given me the photograph. Didn’t they expect her to survive the half-hour journey to central London? Was this all I’d have left?
Everything seemed to get jumbled. My husband arrived looking shocked. He helped me struggle into some clothes. I couldn’t stop crying in the taxi, or when the cardiologist explained the diagnosis. The heart condition was confirmed. Pulmonary atresia. The vessel taking blood to the lungs didn’t work. One of the heart’s four chambers was abnormal. For now, she was stabilised by drugs. Without treatment she would die within days, but she wasn’t big or strong enough to survive surgery. I cried until my face was swollen and my head ached with shock and fear.
By now our baby was in an incubator, attached to a lattice of tubes and wires. She looked tiny, as though she had shrunk. Back at home, I couldn’t speak to my mother, or to my four-year-old daughter. Instead of celebrating the new arrival, a stunned silence shuddered through the house. When my boss phoned to offer his sympathy, the words “heart defect” got stuck in my throat.
The following day, the nurses agreed to let me hold the baby we had hastily named Sarah. Gingerly, she was extracted from her cocoon and I put her to my breast. Even though she was being fed by tube, she pulled strongly at my milk.
In the following days, as Sarah got stronger and bigger, I began to ponder her future, our future together. If she did survive, what would life be like with a sick child? The hospital had already given me a glimpse of what other families were going through. You only had to look at the stacks of cards, toys and balloons around some beds to realise that the children had been in hospital for months. Their parents virtually lived there.
What kind of family life could we expect if that was our fate? For all the time devoted to buying a buggy and painting the cot, we hadn’t given a thought to what it would mean if we had a sick or disabled child. Would I have to give up my job? Would our circle of friends gradually drift away as we became more and more absorbed with keeping our ailing child alive?
In the next three years we did face a medical obstacle course of surgery and procedures, echocardiograms, x‑rays and ultrasounds. We were in and out of intensive-care and high-dependency wards, hoping and praying for recovery each time. The success rate of the first operation was said to be 75%. It’s difficult to describe how you feel when you deliver your child to the operating theatre, believing there’s a 25% chance she will die in there.
When Sarah was in hospital, we slept next to her. If it was my turn, I’d feed her breakfast and then catch the tube to work. I’d kiss her goodbye and leave her in the cot, and as I sat on the train I’d find myself visualising her death, as though my mind was preparing itself for the worst. I’d arrive at my desk, wiping streaks of mascara from my face.
With each operation there were new setbacks. At first, the doctors were worried that the blood vessels in the lungs were too small. Then fluid collected round her heart, making her breathless. She got pneumonia and was rushed to hospital in the middle of the night. She lacked energy, her legs looked disproportionately small and skinny. In the winter, a trail of brown liquid dribbling down the side of her face would signal the arrival of yet another ear infection. She suffered from constipation so severe that she screamed in agony. Small exertions made her breathless.
Despite all this, Sarah was a contented child. Because she couldn’t get around easily, she spent hours playing with her favourite toy, a box of squeaky eggs. She didn’t have the strength to walk until she was two, instead shuffling around on her bottom, blue lips always ready to break into a broad grin.
I worried about the effect on her older sister, who was precociously independent, as though compensating for Sarah’s weakness. And as I mediated between my two very different girls, I harboured a guilty secret: it’s easier to feel like a good mother to a sick, needy child than it is to a healthy one who is bright and constantly challenging. Yet, the net effect on the family was strengthening enough to make us feel ready for a third child (we had a boy three years after Sarah’s birth).
More than 2,000 children are born each year with serious heart conditions, a small fraction with pulmonary atresia. The long-term solution for Sarah was to completely reroute her circulation. I couldn’t believe it would work. Surely, I said to the doctors, she would be ill for the rest of her life?
As the years passed, we realised how miraculous that final surgery had been. The blueness receded. Sarah gradually caught up with her peers. The only reminder of her condition was the welt of a scar up the middle of her chest, and that was beginning to fade. On routine appointments the cardiologist greeted her with “Here comes my favourite patient. And do you know why? Because you’re so healthy.”
It took Sarah’s birth for me to understand something fundamental about being a parent. It’s a vulnerability, an emotional exposure that is with one for ever, like having a permanently open wound. But for the moment, my biggest problem was trying to explain to Sarah why she couldn’t have her ears pierced. It was making sure she took her daily aspirin, and stopping her from doing handstands in the swimming pool, as she is not supposed to hold her breath under water.
I was always aware of living on the edge. At any moment our luck could turn. Eventually it did, in an unexpected way. “My ballet teacher says my back isn’t straight. Do you want to have a look?” How could I have missed it? The S-shaped curve of her spine, pushing her right shoulder up and cruelly twisting her torso. “Why me?” she wailed to her friends on Facebook, as we trailed back to Great Ormond Street.
The doctors have no answer to that. After a year in a hard, plastic corset, she faced another major operation. Skin and muscle would be peeled back from the spine, metal rods screwed into position to keep it straight. For anybody this would be serious stuff, but the whole procedure was rendered infinitely more risky by Sarah’s rare type of circulation.
All we could do was trust the doctors, just as we had before. And Sarah herself. In her 15 years she has shown enormous resilience and has an infectious personality that touches everyone she meets. And maybe that is part of her condition too.
For more information about heart conditions see: www.bhf.org.uk