Some premature babies leave the hospital with a disability or other issue that will require long-term care. The change will require significant adjustments and acceptance, on top of all the other adjustments that come with recovering from premature birth, an extended hospital stay, and coping with a newborn. Your journey will be complex, and in this article, we’re going to look at some common long-term issues and the professionals who may help you and your child along the way.

Long-term issues

One of the most common questions asked by parents of premature babies is whether their child will be normal. Normal is, of course, a relative term. Extremely premature babies are more vulnerable to a number of physical and behavioural issues, either because of interventions made at the hospital or because of the reduced time they spend in the womb. Behavioural issues can include ADHD, autism spectrum disorders, speech delays, and difficulties processing information. There are degrees of all of these things, and no guarantee your child will have any of them simply because they were born extremely premature. You may just want to be more alert to symptoms because of their increased risk.

Potential physical problems include asymmetrical head shapes and restricted necks, which they may outgrow and, if not, can be improved with help from a physiotherapist or osteopath.

Cerebral palsy is a term used to describe a number of coordination, movement, and postural disorders caused by damage to your baby's brain. It’s incurable, but, again, there are degrees of this condition; symptoms can range from severe to very mild, and a doctor will monitor any CP baby very closely. Physiotherapy may begin before you leave the unit. There are a range of therapies and medications available; it’s just a matter of working out what will work best for your child’s health.

Many premature babies have long-term respiratory trouble, particularly if they are born before 30 weeks, and this can sometimes be managed with prescription inhalers.

Just as they were on the unit, your baby is more vulnerable to infections for at least the first few months when they get home. This can develop into a long-term problem if they get meningitis or pneumonia, which can be devastating when a baby is premature, especially if they have other problems.

Living with a disability

Knowing your child will live with a disability can be both stressful and frustrating, especially if doctors are unable to give you definite answers to questions like whether they walk, talk, or hit other major milestones. Parents often feel most empowered when they can be proactive and make clear plans for their children, and it isn’t easy when your child’s future is uncertain. The more a child falls behind in meeting their expected milestones, the more likely it is that they have some form of long-term disability. The following therapists can help by showing you exercises to do with your baby and will be able to tailor programs specifically for their needs.

Speech and language therapists: We have to shout out Unii’s amazing speech and language therapist, Rosemary Nicholson, who has taught us so much about baby speech but is also trained to help babies who have difficulty sucking and swallowing. This can ensure that the way they feed is safe and that milk is not spilling into the lungs. As your baby grows, speech and language therapists can also advise you on how to help them communicate.

Occupational therapists: This sort of therapy may begin in the neonatal unit. The OT will help you become familiar with your baby’s behavioural cues. Premature babies are often easily overstimulated, and some are very sensitive to noise, light, or touch. An OT will help you identify the right amount of play and stimulation for them and may even advise you on equipment you need at home. He or she may give you a programme to help you develop your baby’s fine motor skills.

Physiotherapists: Physiotherapists often work closely with OTs and can guide you in positioning and handling your baby correctly, especially if they have head flattening or other symmetry issues they have after birth. It’s important to be consistent with programmes given to you by your OT or physical therapist. If your baby is irritable or shows signs of distress after modifications, do not give up. Nobody likes to see their baby upset, especially with everything else your family is enduring, but tenacity is so important. Reach out to your therapists for advice that allows you to persist with confidence, calmly supporting your baby in optimising their development.

Osteopaths: Osteopaths help the parents of babies in a number of ways, including the effects of colic and tongue-tie, working on the basis that a body that moves well functions better. Premature babies sometimes have different patterns of movement than term babies, and these differences can negatively impact their health and development. An osteopath will have gentle techniques that help them improve and may also be able to support mum’s post-pregnancy recovery.

How can I support my baby's disability?