Heart Broken

I sit on a vinyl covered chair, my gaze resting on the tiny form in the clear, Perspex cot. It’s not really a cot – more a box on top of a trolley. Wires dangle from a bleeping machine that measures my baby’s heart rate and tracks the oxygen saturation levels in his blood. He looks heartbreakingly fragile, his clothes dangling off a body too tiny to fill them out; his sparrow-thin legs like little twigs. A cannula attached to his skull delivers life-sustaining ‘maintenance’: a sugar and water solution that is helping to keep him alive. I watch him, aware of my breasts swelling tightly against my top; but instead of picking him up to feed him, I will be going downstairs to the breast-pump room and expressing whatever drops I can into a sterile plastic bottle. None of this ever entered my mind when I was pregnant: I thought my first few days with my baby would be filled with feeding and cuddling and nappy changing – but all that changed the day he was born.

I’d tried for years to get pregnant. Each month, even if I was only a day or two late, I’d get my hopes up, start thinking of baby names – and then cry my eyes out when I felt the crippling pain that heralded my period. When it finally happened, I wouldn’t let myself believe it was true to begin with, waiting five months before I told anyone apart from my husband, not wanting to jinx anything by celebrating too quickly.

Because I had waited so long, I enjoyed every minute of my pregnancy. I felt slightly nauseous in the first few months but I never threw up. I was continuously hungry too – almost as if the baby was telling me to pile on some extra calories so I’d have reserves for breastfeeding. The twelve weeks’ scan was fine and so was the one at twenty weeks. The midwife asked if we wanted to know the sex, but we both declined - I’d heard cases of people being told the wrong thing and buying up stacks of pink clothes for a little boy or blue for a girl. We chose neutral colours: whites and creams, thinking that we would soon be inundated with clothes in the appropriate colour once the little bean made his or her appearance.

I quite liked the idea of a water birth, but the midwife thought there was a trace of meconium in my waters and so instead I was presented with a birthing ball – as if that was going to be any use! Foolishly, I mentioned that I wanted to try doing this without pain relief and Jenny the Midwife’s face glowed at the prospect of me “tackling this mountain we call pain” with only breathing and encouraging words to take me to the summit. An hour or so in, I was desperate to change my mind, but her enthusiasm stopped her ears, making her deaf to my pleas.

After a while, she told me I was ready to push. I strained as hard as I could, feeling bruised as I did so, but nothing happened. Feeling around again, her expression fell. “I’m so sorry,” she said. “You’re only 8 centimetres. I was feeling the wrong thing.”

It was on the tip of my tongue to ask her what else could I possibly be keeping up there – a sideboard? a garden shed? – but she sent me off for a bath instead, saying the water would relax me and might help the swelling go down.

Finally, ten hours after my waters had broken, my beautiful baby began to find its way out, helped along by the most strenuous pushing I could manage. “It must be a girl!” Jenny said excitedly. “That’s a really pretty mouth!”

My husband looked at the other end of the baby. “That’s not a girl!” he said emphatically.

Minutes later, I was cradling my new-born baby in my arms, letting him nuzzle against my breast, delirious with happiness.

“He’s a bit blue,” my husband said critically.

“New born babies have poor circulation,” I told him – already the expert despite being five minutes a mother.

“His hands and feet are cold too.”

“He’s fine,” the midwife said, “but if you’re worried, we can get the paediatrician to look him over.”

I felt embarrassed when she said this: we were coming across as pushy parents; but to keep my husband happy, I agreed to let someone make a few quick checks before we took our baby home. It was only as I heard the sounds of other infants crying a while later that I realised my baby was still missing.

I lean over and gently stroke the softness of his cheek. Every maternal instinct I possess wants to pick him up and hold him in my arms, but he’s wired up to the portable ventilator and machines are measuring all his vital signs. This isn’t what it’s supposed to be like! my heart cries. And then I gaze at him once more, fighting for his life, and wonder if I will ever know what it is to cuddle him close to me or to feel him tugging at my breast.

The doctor who arrives at my bedside looks grave. Sitting down on the edge of my bed, he looks at me. “I’m afraid your baby is seriously ill.”

In that moment, the world stands still. Is he telling me that I’ve gone through nine months of pregnancy and ten hours of labour to be left with nothing at the end?

“His oxygen saturation levels are very low,” the doctor continues. “Most people have SATs levels somewhere between 90 and 100%; your baby’s are in the 20s. With something like this, it’s usually caused by a problem with either the heart or the lungs. We’ve done a chest x-ray and his lungs look okay, so that means he probably has some kind of heart defect – transposed greater arteries would seem the most likely diagnosis.”

He starts sketching some kind of diagram on a piece of paper, but I can’t take any of it in. The science washes over my head as the tears drip down my face.

“He’s going to need several operations, but we don’t have a specialist cardiac unit here. I’ve arranged a transfer to Thomas and Guy’s. I suggest that you stay here overnight and then travel to London tomorrow – we could do with keeping you in for observation.”

“I can’t stay here if my baby’s in London!” I burst out, but he’s already leaving.

The midwife pats my hand. “How about we get you transferred to the maternity ward at St Thomas’s? At least you’d be a bit closer then. There’s a free shuttle service between the two hospitals – you can go and see him at Guy’s and then go back to St Thomas’s for the night.”

I look round desperately for my husband. He went home to fetch the baby car-seat that we’d forgotten in our rush to the hospital earlier on. It seems incredible now to think that we actually thought we’d be taking our baby home with us today.

“Can I see him?” I ask.

I’m bruised from pushing and sore from stitches, but I manage to shuffle along the corridor in my dressing gown, letting the midwife lead me to Intensive Care.

“You need to be prepared for this,” she warns before she opens the door. “He’ll have wires everywhere and there’ll be lots of beeping.”

But I know what to expect: I’ve seen episodes of ‘Casualty’ and ‘One Born Every Minute’; and besides, he looks so beautiful, despite all the wires, and I just want to hold him, even though I know I can’t.

I’m still standing there when the ambulance men arrive with a special baby pod so they can take him away. I should be going with him, but there’s a strict rule of only one patient per ambulance, and since I’ve just given birth, I count as a patient too. I cry when they pick him up and carry him into the ambulance. A part of me wonders if I will ever see him again.

*

By the time all the paperwork is signed and we’ve gone home to pack a hospital bag for me and find some clothes for the-baby-who-still-has-no-name, it’s past 7pm and we still have to drive into London. In my panic, I forget the map we’ve been given; and although we have sat nav, it takes ages to find somewhere to park that’s close enough to Guy’s for me to be able to shuffle the distance between car and hospital.

He’s already had his first operation – an atrial balloon septostomy – and I feel guilty that I wasn’t there to watch over him while the tube was inserted through his groin and pushed up to the heart. This is just a temporary measure though: they’ve widened the hole between the two chambers of the heart – the one we’re all born with that closes up some time after birth – but he’ll need open heart surgery within the next two weeks to correct the defect. They’ve put him in a tiny white gown with the name of the hospital printed in red block lettering – almost as if he’s their property, not mine.

I cry, looking at him. Post-natal hormones and shock and grief mingle in a cocktail of emotion. “He’s so small,” I sob, “and it’s not how life should be.”

“But he doesn’t know any different,” my husband remarks practically. “Besides, if you think he’s small, look at the baby in the cot next to his. She was only two pounds when she was born – it says so on her notes. At least he’s a fighting weight.”

I want to stay here all night, standing by his cot, but I’m already booked into the maternity ward a few miles away and so, reluctantly, I make my way back down to reception and wait for the cab that will carry me away from my baby.

*

Although I should be worn out by now, exhausted from giving birth, I find it hard to sleep in the narrow hospital bed. There are only three other women on my ward, but they each have their babies next to them and the thin crying sound wakes me over and over again, my body tuned to respond to a mewling infant. At one point, I wake up and panic because I can’t feel my baby moving. My hand flies to my abdomen and then I remember – he doesn’t live there anymore.

The next morning, I’m in agony with my stitches, I ask for pain relief and a severe looking nurse unlocks a cabinet and hands me two paracetamol. Surely I deserve something stronger than this, I think. She gives me a sniffy look and tells me to order lunch.

I’m not planning on hanging around – I have a baby who needs me – but apparently, they won’t sign me out until I’ve been given a clean bill of health. I watch the clock, my frustration ticking ten times faster than its hands. I don’t want to be a long distance parent: I need to be in the same room as my child.

*

That was only a day ago, but already, it seems like I’ve sat by his bedside forever, watching the tiny chest rise and fall as the ventilator helps him to breathe. His eyes are unnaturally large within his tiny face; when he is awake, he lies there silently, not making a fuss. I wonder what is going on his mind – whether he realises that lying so still and so quiet is not what babies are expected to do.

My breasts tighten again and I hurry to the downstairs room, anxiously squeezing out as much milk as I can; feeling like crying when it doesn’t even meet the 20ml mark. A Muslim girl is there for the same purpose. She tells me about her own baby – born two months early and now suffering from an infection they think she’s picked up from the hospital. Her faith is humbling as she talks about the will of Allah and how, if her baby dies, it will be because God knew this little girl wouldn’t have a very good life.

I return to my own baby, my mind dwelling on what my new friend, Fazi, has said. I’ve already talked to one of the doctors, asking how long it will be before my little boy can have his life-saving operation. He thinks me impatient, and maybe I am; but a new mother should be able to hold her baby, not just stare at him in a Perspex box.

*

It’s another three days before I’m told that the date is set for November 5^th. My 8 days old baby will be put to sleep and then his ribs will be broken and his chest carved open so the consultant can perform an arterial switch. The doctor draws a diagram, and this time, I’m paying attention. The arteries should form a figure of eight, but instead, my little one has two independent circles so that the oxygenated blood doesn’t pump around his body at all.

My husband’s presence has been intermittent. He’s allowed two weeks’ paternity leave and his office has offered him compassionate leave too, but he declines to take it, needing to keep busy. I’m left to continue a solitary vigil, a mother’s love binding me to my baby’s bedside as I try to store up as much time as I can with him, just in case...

*

The night before the operation, we are shown photo albums of other children who have had the same procedure. I gaze at the red, bloody line travelling from the top of the sternum to the midriff, thinking that it could look worse. He will always have the scar, but it won’t grow with him. The mark that effectively splits his torso in half now will be barely noticeable by the time he reaches his teens.

My husband has reappeared – they need us both to sign the consent forms. I read the words “I understand that one in five patients may not survive this procedure” and my heart stills. Nevertheless, I sign the part that promises not to sue the hospital if my baby dies.

“We need a name for him,” my husband says. Until now, we’ve been scared to name him in case it’s tempting fate, but so many people have asked after him or said they will pray for him that we can’t put it off for any longer.

I mention the name that popped into my head a few days ago – Nathaniel. My husband likes it but refuses to commit until he has researched what it means. When the google search brings up “Gift from God”, tears come to my eyes. “We can’t call him anything else now, can we?” I say.

*

November 5^th feels like the longest day in my life. I follow the nurses as they wheel my baby in his Perspex cot down to theatre and watch while the anaesthetist sticks the needle into him.

“Goodbye, Mum,” the doctor says, sounding almost cheerful.

I can’t bear to walk away from him, knowing that this might be the last time I see him alive, but they turn me out ruthlessly, leaving me to wait for the hours it will take before I know the final outcome.

My husband’s all for watching a film, but I refuse to sit in a cinema while my baby is under the knife. Instead, we walk the streets around the hospital, not straying too far in case...

When my husband’s phone rings and he tells me the operation was a success, I burst into tears. We hurry to intensive care and peep at Nathaniel, knocked out with morphine, his skin stained orange with iodine. The ragged stitches down his chest give him the appearance of a miniature Frankenstein’s monster, but he’s still beautiful.

*

The following day, he is back on the children’s cardiac ward, and a few days after that, I’m able to feed him for the first time. I sit quietly with him on my lap, marvelling at the fact that I can now pick him up any time I like, and when he finds the nipple, he sucks away contentedly despite being only tube-fed up until now. There’s still a long road ahead of us with regular check-ups and medicine twice a day through a sterile syringe, but for now, I luxuriate in the wonder of motherhood, my baby finally back where he should be, in my arms, and I know that both of our broken hearts have been mended.