19 Feb Too soon: the challenges of a premmie baby

Parents of premature babies often face one of life’s greatest challenges. There is no right or wrong way to feel after having a premmie baby. Lana Al Habl and Natalie Ritchie speak to two families, a generation apart, about their unique experiences.

35 Years Ago…

When Maggie Morkos, 68, went into labour 35 years ago at 28 weeks, she put it down to flu. To this day, she still doesn’t know what prompted such an early delivery of her two boys, Chris and Andrew. “One minute I was vacuuming, the next I was in a taxi getting myself to the hospital. I was scared because I hadn’t been warned that premature birth was a possibility with twins,” she says. With her husband overseas at the time, the experience was lonely and fearful.

Born naturally, Chris weighed in at 1.665kg, and Andrew at 1.37kg and 38cm long. “Chris suffered the most. He had a kidney infection (and at two years old had one kidney removed) and fluid on his brain which needed constant draining. When they intubated him, his little throat couldn’t handle it and his vocal chords were slightly damaged, so he still speaks with an acutely husky voice.” Andrew contracted viral meningitis due to an outbreak in the hospital and almost didn’t make it. To make it harder, the boys were treated at different hospitals. Chris needed specialised care that could only be given at Prince of Wales hospital. “We’ll never forget the world-class medical attention over the three months the boys were in NICU. But it was a struggle shuffling between hospitals. Even now, it’s an emotional ride having to recall those memories. The boys are healthy, happy 35-year-olds now but it was an ordeal to get there.”

Now…

When Jacquie Schutz’s son, Mark, was born at 28 weeks, she was at a greater risk than the baby. “I haemorrhaged an estimated three litres of blood at home, despite being on total bed rest,” she says. “After the birth at Shoalhaven Hospital, they prepared Mark’s father to lose me,” she says. “They intubated me in intensive care, and surgery showed my placenta had torn a hole in my uterus. They swept the blood off the operating theatre floor with a broom. They had to remove my uterus.”

Although Mark was born a healthy 1.4kg, 46cm long and crying, his Agpar score was nine both at birth and five minutes afterwards, he was transferred to a Sydney hospital for care. Two paediatricians, Mark’s father and her own father delivered expressed breastmilk. Four days later, Jacquie joined him but was then diagnosed with a collapsed lung, possibly the result of surgery or intubation. “ I had oxygen in my room, daily x-rays, and I needed a wheelchair to visit Mark. I was so exhausted I couldn’t even change his nappy.”

Jacquie and Mark spent seven weeks in the hospital, but made a full recovery. “I have no health problems. The hardest thing about losing my uterus was having that choice taken away from me. Mark had slow weight gain until six months, but at his 12-month check-up, they were so happy with him they don’t want to see him again until he’s three. I still tear up about it occasionally, but more because of how far we’ve come than what we’ve been through.”

Family Matters

In a Neonatal Intensive Care Unit (NICU), the physical separation of premature babies from their parents often has an impact on the physical and psychological health of both parents and infants.

A 2015 study of seven hospitals across Australia, New Zealand and Canada, found that premmie babies whose families were actively involved in their care grew faster, were less stressed, spent less time in hospital, and were less likely to be readmitted to hospital after discharge, compared to babies cared for primarily by hospital staff. These babies were also more likely to be breastfed and for a longer time, with many long-term health benefits.

Titled Family Integrated Care (FiCare), the study prompted a change in the way premature babies are cared for in hospitals. Rather than leaving the majority of care for the baby to NICU professionals, under the FiCare model parents are involved in all possible aspects of their baby’s care, such as feeding, holding, nappy changes, bathing and providing oral medications, tracking growth and progress, decision-making, and taking part in medical rounds.

Parents in the FiCare study showed increased confidence in participating in care decisions and had stronger relationships with the medical team. They were also more prepared for the transition home, managed better once home, and had less anxiety.

The Psychology of Prem

Adelaide psychologist and mother of three boys, nine, six and one, Hanna Beaven, says there is no right or wrong way to feel after having a premature baby – experiencing a range of different (usually conflicting) emotions is typical. Hanna specialises in families’ emotional wellbeing in the stages of trying to conceive,  pregnancy and parenting babies and young children, hannabeavenpsychology.com.au

“While every parent’s experience of having a premature baby is unique, there are some potential commonalities. You may feel proud to see what a fighter your baby is, thankful to have an amazing medical team providing the best care for your baby, supported to have family and friends around you, relieved to have a break from the hospital, and joyful to finally take your baby home.”

“At the same time you may feel frightened for the current and future health of your baby; wonder why your baby was born early, not feel like your baby is your own, feel helpless at not being able to hold your baby, feel guilty at not wanting to hold your baby, feel frightened by all the technology, chords and noises, feel isolated from friends and family who don’t know how to help or feel sad at having to leave your baby in the hospital when you go home. Mothers may have physical health issues after a potentially traumatic birth, and you may be juggling regular visits to the hospital and other areas of life like the care of the baby’s siblings and work. All these things can leave parents feeling desperate, hopeless or angry.”

Hanna recommends:

• Look for the positive feelings and acknowledge the negative ones.
• Be aware that your partner may be having a different experience to you. Try to keep lines of communication open.
• Let your support networks know how they can help you. The Raising Children Network has an ‘emotional wish list to share with friends and family’ and compiled by premmie parents. It contains suggestions like “My baby lives and is important to me. I need to celebrate her birth with you, no matter how sick she is,” and “Please don’t reassure me with empty words like, ‘The worst is over now’. Our baby might have problems in the future.”
• Make it clear to health professionals that you want to become as involved as possible.
• If your baby is able, you can nurture them by watching them, talking, singing, and reading to them, providing gentle touch, providing space for your baby if they become overstimulated, placing something soft safely in the incubator that smells of you, changing nappies, or feeding your baby with breastmilk or formula.

What to do:

Acting fast can prevent premature birth, but signs can be subtle. Miracle Babies Foundation advises you to seek medical help immediately if your gut feeling tells you something isn’t right, or you experience any of these symptoms:

• Contractions every 10 minutes or more often
• Watery fluid leaking in a gush or trickle
• Change in vaginal discharge, or bleeding
• Low, dull backache that persists or comes and goes
• Vaginal or rectal pressure
• Menstrual-like cramps, with or without diarrhoea
• A decrease in baby’s movements

Risk factors can be medical (such as rupture of membranes), behavioural (including stress in some instances) or related age (pre-18 years or over 35 years), or racial (women of African descent are as much as five times more at risk).  Pregnancies spaced within 6 months of the last child may also raise the risk.

Support is available:

Miracle Babies Foundation provides support to the 25,000 families with babies born prematurely each year. This includes in-hospital support visits by volunteer parents who have had a premature baby themselves, fortnightly playgroups for parents of premmies with toys designed to aid premature babies’ development, free emergency care packs to cover those first 24-48 hours in hospital, a gift program to help parents feel remembered on occasions like Mother’s Day and Christmas, and a practical 128-page Nurture Guide put together by health care professionals and parents, available free in NICU’s and for order online. 

For 24-hour support, call 1300 622 243, miraclebabies.org.au