“I’m so sorry this has happened to you,” the doctor says.

By KIRSTY BADCOCK

“I’m so sorry this has happened to you,” the doctor says. She has come into the cold hospital room to provide a second opinion. I nod. I already know it’s bad news.

I’m 30 weeks pregnant and I’ve just been told that my baby will probably not survive. Thank goodness my mother is with me. After we receive the news, it’s suggested that we have some lunch and call my husband. Like obedient children, we do as we’re told. We’re so shocked we don’t know what else to do and, somehow, it is easier to follow instructions than to think for ourselves.

My precious, much longed for baby has a right-sided congential diagphramatic hernia – a large hole in the muscle that sits below the lungs. It has no known cause and is extremely rare. His liver and bowel have pushed up through the hole into his chest leaving little room for his lungs to grow. His right lung is almost non-existent and his left lung is small. We are told to expect the worst. His tiny lungs will probably not be able to sustain him.

Nestled within my body, my baby is fine – he doesn’t need his lungs until he is born. I can protect him now and want to keep him safe inside my womb forever. But, like any mother, I also want to meet my baby, to see his face and to hold him. It feels like wanting him to be born is somehow wishing for his death.

We are counselled by the doctors about how his death will be managed. That they will not let him suffer. That, if they need to, they will let him go. We need to pack some clothes in which to dress him in case he dies. The irony that I’ll only need clothes for my baby if he dies strikes me like a whip. It’s sharp and cruel and it stings.

We are told that he probably won’t live for long so we organise for a priest to baptise our baby as soon as he is born. To be preparing for my baby’s death before he’s even born feels like an act of betrayal. I stroke my belly and whisper to my baby, “I’m sorry”.

Buying clothes for a baby should be fun and joyous, but I wander around the shop in a fog of sorrow. I make small talk with shop assistants and smile politely at other pregnant women. I buy two beautiful outfits. Images of burying my baby in these clothes invade my mind and tears stream down my face as I walk out of the shop.

“When are you due?” asks the cashier at the supermarket with a grin. “Do you know what you’re having?” smiles the drycleaner. “How are you doing?” asks a concerned friend. Every well-meaning question leaves me smarting. Each one seems to chip away at my very being. I fear there will soon be nothing left. I am shutting down, hollowing out. I have less and less to give. I don’t want to go anywhere or see anyone.

After 10 weeks of hospital visits, tests, monitoring and appointments, the day finally comes to have my baby. I am keen to meet him and, in a way, am relieved that the waiting will be over. I’m surprised by the calm that descends over me. What will be will be.

Amazingly, as our baby is born, he gives a little squawk. It’s like he’s announcing his arrival saying, “I’m here! I’m here!” It is an unexpected joy. I see him for a few seconds and then he’s whisked away by the neonatal intensive care team.

It is important that our baby is with one of us, so my husband accompanies him to the intensive care unit. Our son is baptised without me.

As soon as possible I am wheeled up to intensive care to meet my baby. A team of doctors and nurses surround him and he is covered in wires and tubes.

My first thought is how beautiful he is. I notice a dimple in his chin. I touch his hand – five sweet little fingers. He looks perfect. At last, I have met my darling baby. He is fragile and struggling, but he is alive.

We named him Robert, but we call him Bobby.  He is beautiful, he is loved and he is also desperately sick. We are told to expect the worst. His life is in the balance.

I cannot hold him. I am told even stroking him will cause him stress. So instead I just cup my hand around the top of my baby’s downy head and sit by him.

Bobby’s tiny body is dwarfed by the vast quantity of equipment that surrounds him and invades his tiny body. He looks like he is in a laboratory from a science fiction horror movie. Ted, my almost three year-old looks at all the wires and tubes attached to him and says, “Bobby’s all tied up with string so he can’t get away.” He’s kind of right.

I worry about Ted too. How is Bobby’s illness affecting him? How much of our stress and anguish can I shield him from? How can I make his life as normal as possible? It’s a juggling act and I’m a clown in training – I keep dropping the balls.

As Bobby clings onto life, death hovers over him. I feel its presence. Another baby dies in the ward and I’m haunted by the scenes I witness as I am ushered out of the room. When I return, I cannot bear to look at the empty cot in the corner. I am sharply aware that Bobby too may soon pass away; that I must savour every moment I have with my beloved boy. The cracks in my heart grow wider.

It doesn’t feel right that there is so much grief and sorrow surrounding Bobby’s birth. I don’t want to hear people say “I’m sorry” anymore. I have had a beautiful baby and, like any new mother, I want to celebrate him and be congratulated on his birth. We hastily throw together a catch up with close friends and family at a local pub to mark Bobby’s presence and celebrate his birth. I proudly show off pictures of our darling baby and feel my heart swell as I hear people “ooh” and “ahh”over the photos. There are tears that day, but also laughter and smiles. Finally there is some joy around our beautiful baby’s birth.

We are cradled by an amazing network of people who provide food, childcare, texts and emails of support and much more. Our families are amazing. I am incredibly grateful and am sustained by it but, despite this, we live in a bubble; unable to be reached or to reach out. I am disconnected and alone. The hospital becomes home. The neonatal staff become another sort of family, a couple with a baby who has the same condition as Bobby become fast friends.

Some of my friends come to meet Bobby. I am touched by the effort and bravery of those who come- intensive care is a confronting place. I’m glad that, if Bobby doesn’t make it, they will have met him.

In this dark and difficult time there are still moments of joy. After five weeks of just sitting by Bobby, I finally get to hold him. It takes about 15minutes and two nurses to carefully transfer him along with all his wires, tubes and equipment into my arms. The curtains are drawn, the lights dimmed and I am allowed to hold my darling boy. The tears flow and I spend a beautiful few hours cradling my baby before handing him back to the nurses.

Bobby’s stay in hospital is a roller coaster ride – good days, bad days, hopeful days and days of despair. But after two months in intensive care and a month in the neonatal ward, Bobby is finally well enough to come home. There is no doubt Bobby’s life was saved by the outstanding doctors, nurses, and allied health professionals at the Royal Children’s Hospital.

Leaving is an exciting day, but also a scary one. There are no oxygen monitors at home, no nurses to replace Bobby’s feeding tube when he pulls it out, no doctors to call on. We are on our own. I’m incredibly grateful to the hospital but I’m also immensely proud of all that my little fighter has achieved and overcome.

It’s the beginning of spring and the day we bring Bobby home is warm and the air gently scented. We pop him in the pram and meander down to our local shops. We’ve waited a long time to do such an every day thing. I look to the future and smile. There will be many more walks with my darling Bobby… home at last.

In her previous life, Kirsty worked in marketing & communications. She is currently taking some time out from the “working” world to care for her two young sons. She is also writing a book.

Kirsty has asked that we credit Heartfelt, who took photos that gave the family great comfort when it looked like Bobby would not survive. Heartfelt is a volunteer organisation of professional photographers from all over Australia dedicated to giving the gift of photographic memories to families that have experienced stillbirths, premature and ill infants and children in the Neonatal Intensive Care Units of their local hospitals, as well as children with serious and terminal illnesses. If you need or know someone who may need the services of Heartfelt, please call them on 1800 583 768. Their web address is www.heartfelt.org.au.