The fears of a preemie parent - Heather's story

Heather's Story Hero
For parents of premature or sick babies the challenge is not the parenting, it is the uncertainties, the haunting memories and the untold fears.

All any parent wants for their child is good health. One of the first things people ask is, “Have they got five fingers and five toes”? Of course there are bigger issues than a missing toe, but they’re really asking: “Are they healthy”?

Health is something every parent worries about - from the moment of conception, to the birth and beyond, we always ask: “Is my baby healthy”? That’s why we attend the check-ups, antenatal appointments and anomaly scans, as it assures us that our baby is safe and developing normally.

But for parents of a premature baby it’s a whole different ball game. Instead of the usual joyous birthing and parenting rituals, such as listening to your baby’s first cry, holding your little one in your arms and responding to their every need, you are instead left with uncertainty and fear. From the moment your baby is born you are surrounded by a horrifying silence as you listen eagerly for your baby’s first cry.

There’s no happy tears, no emotional birthing cuddles. Instead, you are left with empty arms as the doctors work tirelessly to try and resuscitate your baby. You catch a brief glimpse before your baby is rushed away to the neonatal unit to be stabilised, and hours pass before you know whether or not they have survived.

Hours seem like days and months pass by like years, as you wait and long for the good news that your baby is ok. Everything is so surreal and somehow you convince yourself that none of it is real, that you are living an endless nightmare and you’ll soon wake up to find that all is well and you are still pregnant.

The usual exciting milestones that all parents look forward to are replaced with a sudden need to learn the purpose of every wire and tube, and familiarise yourself with a whole new world of risk and medical jargon that you never dreamed existed. You have to watch painfully as some babies simply disappear from the ward, and day by day you battle with your emotions, thankful that your baby is still here, but fearful that they will be taken from you at any moment.

You long to hold your baby in your arms, to comfort them, feed them, and tell them it will all be ok. You want to do all the things you dreamed of: walk them in the pram, sing lullabies to them, read them bedtime stories in their new nursery. Instead you have to neurotically scrub and wash your hands before you can touch your baby, you have to watch them through a plastic incubator, and cuddles become a military operation, in which you find yourself covered in wires and staring at the machines more than the baby, terrified that something will go wrong.

You become resentful of the nurses who get the pleasure of looking after your baby, and you watch them painstakingly as you try to learn how to hold your delicate baby, how to feed them through a tube, how to wash around their wires and how to care for them without causing any pain or discomfort.

As a mother you develop an unhealthy attachment to the breast pump, because you realise that giving your baby breast milk is the one thing that you as a parent can actually do for your baby. So you work tirelessly day and night to try and stimulate a breast milk supply. The whole process is painful and relentless but every millilitre of milk you squeeze out is precious. You revel in the excitement of being able to tube feed your milk to your baby, but saddened that you can’t feed them in the way you had envisaged. Each day is filled with mixed emotions, gratitude that your baby is here but grief over the lost moments.

Pregnancy, birth, and parenting - they are all supposed to be the happiest moments of a parent’s life, yet somehow they get replaced with sadness and fear. The most painful part is the distance; the plastic incubator seems like a brick wall between you and your baby. You become bothered that the incubator doesn’t even come close to replacing the safety of your womb. You just have to watch, and respond not to your baby’s cry but to each beep on the machine.

You become obsessed with the monitors, staring at the screens and closely scrutinising each and every chart. Instead of the usual parenting books, you have to read endless amounts of information leaflets, research papers and consent forms. You have to make painful decisions about whether or not to consent to operations and procedures, procedures that you are told could ultimately save your baby’s life, but because of your baby’s fragile disposition the procedures carry many problematic risks, such as death.

You try to avoid it but eventually you have to go to register your baby’s birth. It should be a cheerful occasion, but silently you are tortured by your own troubled thoughts, hoping you will not have to return to register the death. You learn to live hour by hour, day by day, not knowing whether your child will survive, and if by some miracle they do, you worry about what the long term implications will be on their health.

For the parents who get to eventually take their baby home, the journey doesn’t end there. You’re faced with new emotional battles, new challenges, new obstacles that present themselves. Nurses, consultants, health visitors, GPs, dieticians, constant medical appointments, countless hospital visits, endless do’s and don’ts. You now have to face the world, explaining why your child is so little for their age, why they require oxygen, why they can’t attend parties, why you are unable to return to work and of course the endless questions: “What’s wrong with your baby?” “Why did it happen?”

Having a premature baby, however, is not devoid of all happy moments - in fact, it can be quite the opposite. You treasure each little thing, because now the milestones are more meaningful than you could ever have imagined. Your baby’s first cry is such an emotional moment, because for weeks you have watched your baby, unable to make a sound due to the restriction of the ventilator in their throat.

When they first open their eyes, you are thankful that they are able to see, and you suddenly feel an overwhelming sense of connectedness, because after weeks of talking to your baby you now feel they are listening as they try to look at you to say hello. You are grateful when they have their first poo, because it means that all of those relentless hours of expressing breast milk have finally paid off, as their digestive system is working. And when you finally get to take your precious bundle of joy home - well, that is a surge of emotion that no-one could ever describe.

Bringing a child into the world is a challenge for all parents: having to learn new skills, cope with sleepless nights, adapt to a new world with their baby. But for parents of premature or sick babies the challenge is not the parenting, it is the uncertainties, the haunting memories and the untold fears of what the future holds for your tiny little miracle. You see, for parents of premature babies the milestones are no longer simply first time experiences; they are instead significant events. Events signifying health and well-being, they allow you to experience not just happiness but also a much anticipated wave of relief and thankfulness.

Some people describe the parents of a premature or sick baby as unlucky. I prefer to think of us as lucky, lucky enough to have had a baby who has managed to survive against all odds.