My story

Letter to myself, a new mother of a baby with a heart condition

Frances' daughter Beatrice was diagnosed with a rare congenital heart defect at just four days old. In a letter to herself  just after she gave birth, Frances reflects on the challenges of the first few months of motherhood - as well as the importance of keeping going for her daughter.

 Frances sitting on a bench with her family

Frances (right) with her partner (left), and daughters Beatrice (middle right) and Violet (middle left).

To my younger self, a new mother, dealing with a four-day-old baby diagnosed with a rare congenital heart defect.

I can see you crouched in that darkened store cupboard, your back to the door: nauseous and alone.

Silence, except for the repeated growl of the hospital-grade breast pump you have clutched to your chest. This is the only place you could find to release the pressure building in your chest: the pressure to feed a baby you can’t touch.

The first shards of morning light are creeping under the door but they bring no relief from the nightmare you are living. Your baby daughter Beatrice is four days old.

Down the dingy, echo-filled corridor she lies in a glass capsule, covered in wires, surrounded by blaring machines and a crowd of calm strangers. The strangers who hours previously told you that your beautiful girl has something wrong with her heart: an interrupted aortic arch and a large ventricular septal defect (hole in the heart).

She is critically ill.

The lack of oxygenated blood has affected her liver and kidneys and the doctors are working to help these organs recover. The condition is rare, they tell you. About three in a million. Their words fill you with a seething and relentless sense of injustice. Of guilt.

You have spent the night on the floor of the paediatric intensive care unit (PICU) waiting room with your husband in silence. The abyss of sleep is welcome. Necessary. Neither of you can find any words. The room is suspended in time. As the day progresses, you hear the plan outlined: a journey from Oxford to Southampton, a bed in PICU.

Open heart surgery: another when she is six months old.

Beatrice at 6 months, recovering from her second heart surgery

Beatrice at 6 months, recovering from her second heart surgery

As you travel home to collect a bag and move through the house, you avoid making eye contact with your baby’s belongings strewn across the lounge. The debris of a life shattered, a pathway altered.

Your body is aching for the baby it has just released. She was safe with you. You have failed her. Your mind cannot fathom or think or be. The doctors tell you she will survive but you can’t believe it.

She will not just survive, she will thrive.

And this is what I want to tell you: she will not just survive, she will thrive.

In saving her, they save you. What you will lose in those early months will always upset you. A catalogue of lost opportunities and faded chances. You won’t go to baby groups, or visit wider family and friends. You’ll avoid large crowds and long journeys, instead staying cocooned in your routine.

You will always long for the experiences you lost. But gradually, almost imperceptibly, the fear and the anger and that tightly wound anxiety will begin to ebb away.

Violent with her little sister Beatrice

Beatrice with her little sister Violet

Not completely. It never will. It is like a scar that fades and recedes but exists all the same. A stubborn silver mark on the skin, mimicking the gentle white river that meanders down the middle of your little girl’s chest.

I promise that she will amaze you. The first six months will be tough. She will struggle to gain weight at the start and you will have to make your peace with stopping breastfeeding.

You will commit your entire day to ensuring she gets enough calories and her medicines. You will weigh her daily, top up her feeds via a naso-gastric tube for a while and hold her upright for hours to help her reflux.

A happy Beatrice sits on the grass outside

Today, Beatrice is going from strength to strength

You will worry about returning to work. You will worry about your older daughter. You will convince yourself that you will never feel relaxation, enjoyment or personal fulfilment again. But you will. And you will discover the true meaning of gratitude, for the legion of exceptional NHS staff who saved her and supported you. For your family, whose love and unfaltering support cannot be reduced to words on a page.

The same trauma that has taken you to the edge of yourself will also strengthen you. And one day, you will find yourself watching your beautiful, impish, vivacious daughter playing with her doting sister and you will feel a tranquillity that you thought you would never feel again. All shall be well.

Frances Ashton signature

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