Congenital heart defect – Inside Noor’s broken heart

Sweden, Stockholm – I remember the voice in my head when the doctor told us, explaining in precise medical terminology, that our newborn daughter suffered from not one but four congenital heart defects. “But will she survive?” it asked over and over again – sometimes in a whisper, sometimes in a shout.

Our worlds had started to crumble 24 hours after she was born, when doctors noticed that something was amiss with her heart rate. Several tests later and, at 1.40am on May 7, 2013, the news was broken to us.

Since it was the middle of the night, there were no translators available to convey the doctor’s message to my non-Swedish-speaking husband, Mohammed. So they insisted that I translate – words and details I could not even process. 

I remember his gaze: the way he watched me crumble, understanding more from my body language and expressions than he ever might from words anyway. I remember the way his eyes pleaded with me to make some kind of sense of what was unfolding before him. 

So the doctor spoke and I immediately turned his Swedish words into Arabic ones for Mohammed.

Surgery was scheduled. Surgery in which she would have the blood drained from her tiny body and her legs frozen as a machine kept her alive. I imagined it, visualised it – our baby lying on an operating table, her bloodless body surrounded by strangers, helpless and alone. It is a mental image I still struggle to shake off. 

But she would have to endure 10 difficult days in intensive care before that could happen, with tubes and needles invading almost every part of her, from her navel to her nose.

We waited for the day of the surgery with a growing sense of dread and hope – the kind that weighs you down, physically, mentally and emotionally; that settles across your shoulders and forms in the pit of your stomach.

Becoming Noor

For the first eight days of her life, our little girl had been nameless – referred to by the hospital staff simply as baby Mohammed Naib, after my father. But as the day loomed, we knew that should anything go wrong, we did not want her leaving this world without a name of her own. We settled on Noor. It means “light” in Arabic, and how desperate we were to see her lead us out of the darkness.

When the time came to hand her over to the medical team, I asked her to fight, but whispered that I would understand if she could not, if she needed to let go. I knew it could well be the last time that I would see her alive.

And then my world seemed to stop. Time moved so slowly that I felt each second as it passed. I lay in bed, I listened to recitals of the Quran, I watched Hell’s Kitchen on television. And I felt, actually felt, the combined force of people’s prayers – the friends and family around the globe who I knew were praying, in which ever way felt right to them, for Noor.

My body pulsated with the time bomb that seemed to be ticking away inside it. And then, four hours in, the call came: everything was going well. It felt as though I had been holding my breath and could finally exhale.

It was another four hours before the surgery was over. And another 40 minutes until we could see Noor. When we did, she did not resemble the baby I had handed over. Swollen and pale, she was being kept asleep so that her body could recover. Blood was being drained from her via a tube in her stomach. A life support machine breathed for her.

I decided then to take a picture of Noor showing all the tubes that pierced her tiny, swollen body. I wanted a constant reminder of that moment, and something to show her when the day comes to explain her scar; the scar that will for ever symbolise her membership of an exclusive club of broken-hearted heroes. It is a club I would never have wanted her to join, but she did and she survived it.

The next day, they took her off the life-support machine, but she still had not fully come round. As they began to reduce her morphine levels, she went through the symptoms of withdrawal, much like those a drug addict would experience – she would shake, even her lips and eyes would tremble. It was difficult to watch. But I had to.

For a long time, I was afraid of touching her. Doctors had warned me not to lift her from beneath her arms for at least three months. Her chest bones were still healing and something as normal to a parent as lifting their child – to hug or wind her – could risk opening her chest.

Around a million children suffer from some kind of heart defect globally. Almost 1,000 children are diagnosed with a congenital heart defect annually in Sweden alone. Noor was one of the lucky ones. Lunds University Hospital , where she was operated on, is one of the best in the world in this field.

We met many families during our time there – complete strangers we somehow felt closer to than anybody else in that moment; parents in whose eyes we saw the same fears and hopes, in whose silence we found acknowledgment of our own pain. I always wonder what happened to babies Maiky and Niazy, Noor’s room-mates in intensive care at different times during her stay. I hope that they, too, pulled through.

Before this I did not know much about congenital heart defects, but since Noor’s surgery I have educated myself about it. I know family members and friends have, too. I joined an online support group for parents – those who have lost children, those whose children have been through surgery and those whose children are still waiting for theirs. 

It was my youngest sister, Dalia, who first found and joined the group – relaying the information she had learned from it back to us as we sat by Noor’s side in the hospital. It became like a virtual extended family.

There was one family in the group whose child had the same diagnosis as Noor. 

The father of that family, Kenneth Bjorkman, was in touch with my sister and, via his blog, I knew what to expect in the weeks and months to come. That knowledge was crucial; it kept me going over one hurdle after another.

As the third anniversary of Noor’s surgery approaches, I feel the same emotions resurfacing and find myself looking again at that picture. To me, it represents sadness, strength and, more than anything else, survival.

Noor has to have annual check-ups. She still has two small holes in her heart, but they are closing. These yearly appointments will remain a reality for us until we hear those magic words: all clear. But, for now, she is fine. She is a survivor, a fighter, a hero. And that is something to celebrate.

You can follow Fatma Naib on Twitter @FatmaNaib