What to Expect as Your Premature Baby Grows Up
"There are two ways to live your life. One is as though nothing is a miracle. The other is as if everything is."
Albert Enstein, scientist, genius, and premature baby.
Premature-Baby Statistics Can Be Scary
If you have a premature baby it is easy to feel frightened by statistics. Statistics tell you that your baby is more likely to have hearing or eyesight problems, movement disabilities, learning difficulties, developmental delay, and behavioral problems. I’ve even read articles that say your premature baby is more likely to have depression as a teenager.
All this paints a grim future for your child, and does little for your confidence as a parent.
A Long Road for a Little One Born Early
Let’s Look Behind Some Premature Baby Statistics
When our daughter was born at 26 weeks we regularly heard that babies born this early have a 1 in 4 chance of having hearing impairment. Let’s turn that around: based on these statistics, if born at 26 weeks, a baby has a 75% chance of having no hearing problems.
That sounds somewhat more encouraging, doesn’t it?
A study that began in 1979 at King’s College Hospital in London followed up 1500 children born prematurely. Unlike most studies that end when the child starts school, this one has followed premature babies into adolescence and beyond. The study included brain scans and assessed social, emotional and behavioral development. What surprised the research team was how well these adolescents were doing, in spite of their premature births. They showed competence in social and extracurricular activities equal to children born at term, and only slight difference in academic ability.
As the British charity, Bliss, points out in their download pdf Research Evidence, much of the research available was done on children born in the 1990s, and neonatal care has improved markedly since then. This is extremely important because it can be in the days and weeks after birth that babies experience the illnesses or physical trauma that lead to development of long-term conditions. Bliss also point out, as I have above, that while more babies may have problems than those born at term, many have no problems. Bliss attributes this partly to support from parents, teachers and health professionals, and stresses that a nurturing environment is crucial to their healthy development.
So What Are Some Risks For Your Premature Baby?
Cerebral palsy is often linked with prematurity. In this condition the normal signals between the brain and muscles are disrupted, causing movement and coordination difficulties. It used to be believed that lack of oxygen at birth was a major cause of cerebral palsy, but this is now considered responsible for only 5 –10% of cases. More frequently something damages the baby’s brain while still in womb, possibly an infection such as rubella or toxoplasmosis. In rare cases it is genetic. Some premature babies experience bleeding into the brain after birth, which can lead to cerebral palsy. Most hospitals conduct brain scans to check for bleeding, and will be able to advise you on your baby’s condition.
Some mothers at risk of giving birth prematurely are now being given magnesium sulfate at birth to protect against cerebral palsy – but while some studies found this to be very effective, other disagree.
Having read many articles on research into cerebral palsy, what is clear to me is that experts do not agree on how prevalent it is in premature babies. What they do agree on is that the smaller your baby and the earlier he or she was born, the higher the risk. Black babies born early are more at risk than white babies.
Even so, your baby has a higher chance of not having cerebral palsy than of having it. One study suggests that babies weighing less than 3.5 pounds have a 5% chance of developing the condition. This means they have a 95% chance of not doing so.
If you think your baby may be at risk of Cerebral Palsy, the signs to watch out for are:
In babies over 2 months: difficulty controlling head or stiff legs
In babies over 6 months – reaching with only one hand, while the other remains in a fist.
In babies over 12 months – unable to crawl, or crawling with one arm and leg only, or unable to stand with support.
Breathing Difficulties, Especially With Colds
The other most common problem for babies born prematurely is of contracting lung infections. Even if your baby is considered to have chronic lung disease, as our daughter did, the outlook is far from bleak.
Our daughter spent a few hours on a ventilator the day she was born, and then was transferred to a C-PAP machine that delivered air into her lungs under pressure, but did not do the breathing for her. At one week old she was able to breathe for 30 minutes without assistance. By evening that same day she was on a ventilator, having contracted a lung infection. She spent 2 weeks on the ventilator, and remained on oxygen for several more weeks. At one stage doctors warned us she might come home on oxygen but she then improved enough to come home without it.
Two weeks later she was back in hospital, on a ventilator, and seriously ill with another lung infection.
Since then she has spent only one more night in hospital due to breathing difficulties, but has frequently had asthma and chest infections with colds. She is now 12 and it is well over a year since she has had any breathing difficulties, even when contracting a cold. She is on a very low dose of inhaled steroids, and does Buteyko Method breathing exercises.
If your baby has had chronic lung disease, even if she or he seems fine most of the time, it is sensible to be alert for breathing difficulties with a cold or other virus. Be sure to read the symptoms to watch out for below, or my article on bronchiolitis symptoms in babies.
Don’t wait for your child to tell you they can’t breathe properly. Children often simply accept how they feel and don’t realize they need help, especially when they are small.
Symptoms to Watch For:
Feeding difficulties in a baby, or loss of appetite in an older child
Fast breathing (in a baby this is over 60 breaths a minute, by the age of 5 it is over 30 breaths a minute)
Difficulty performing exercises they would normally find easy. For example our daughter was slow as we set out to walk to school one morning so I took her to the doctor. She had a chest infection.
Your Premature Baby is in Good Company
Now Let’s Look Behind Some More Statistics
I have lost count of the number of newspaper or online articles I have read stating that babies born very prematurely are likely to have learning difficulties or delayed development.
Firstly, remember that most studies were done on babies born in the 1990s or earlier. Your baby born today has a better chance than a baby born in 1995.
Secondly, I’d like to point out that delayed development is still development.
Thirdly, a baby born 3 months early does not suddenly ‘catch up.’ In the first three months of life, that baby has developed in the same way that a fetus develops in the last trimester of pregnancy. Apart from socially, at 3 months, this baby is in all respects a newborn baby and should be treated as such for developmental checks.
Yet in many countries a child born 3 or 4 months early is placed in a school year group based not on their true developmental age, but on their date of birth. Had we stayed in England, where our daughter was born, she would have gone to school a full year earlier than she did in Scotland. It’s quite likely she would then have been considered slow to develop, whereas she is currently above average, with a report of “excellent” for progress in every subject.
Upon starting school our daughter took longer to read than her sister did, but even in Scotland, based upon her expected date of birth, she is young for her school year group, whereas her sister is among the older children in her school year. The older our preterm baby gets the more easily she copes with learning and school.
My advice to anyone with a child born very early is: if at all possible delay sending your child to school until the year when they should start had they been born at term. That way you give them the best possible chance to develop as they would have had their birth been ‘normal’.
This is especially important with boys born prematurely, who for reasons that are not entirely clear, tend to have more problems overall than girls, including learning difficulties.
Children born premature sometimes have difficulty following complex instructions and this is the one aspect we have occasionally noticed in our daughter.
How you can help your child to learn
If you find your child does not follow instructions, try breaking them down into smaller steps. For example, with a small child, instead of saying, “Take off your shoes and put them on the rack,” say, “Take off your shoes.” When that has been carried out, then ask him to put them on the rack.
Albert, Einstein, Winston Churchill, Mark Twain, and Isaac Newton were all born prematurely. Your child is in good company!
Will Your Child Find Happiness?
Another apparent statistic is that as teenagers, children born prematurely are more likely to be depressed. I was very surprised when I first read this assertion, since my daughter is one of the happiest people I know. I have often wondered if her early brushes with death somehow left her with a deeper love of life. From when she was a small child people commented on how cheerful she is, and if the neighborhood kids are outside playing it is her laughter that’s loudest and longest. So the suggestion that premature babies grow up to be depressed teenagers puzzled me.
But taken alone, statistics tell us nothing about the cause of that depression.
As I have written in other articles about premature babies, it is common for mothers to feel guilty when babies are born early. This guilt can lead to depression. I had moments of feeling that way, especially in my daughter’s very early days and after she came home.
But I had exceptional support from the nursing staff in the Intensive Care Unit where my daughter spent her first 5 ½ weeks. As well as emotional support, this included being able to hold my baby in Kangaroo Care, learning baby-massage, and later support in establishing breast-feeding. After my daughter came home I also had regular visits from a very caring Health Visitor.
Not all mothers are so fortunate. I met women who were struggling to come to terms with the shock of the early birth and who had little or no support. A depressed mother is less able to express love, and is less confident in her ability to care for her baby, and feeling ‘useless’ is more likely to lead to feelings of disconnection, so creating a vicious circle.
Children mirror their parents, especially mothers, so it seems reasonable to guess that a mother with untreated depression may have a child who later also develops depression.
Therefore if you are the husband, relative or friend of a mother with a premature baby, make sure she gets the support she needs. And if you are the mother of a premature baby and you feel depressed and guilty, the most loving thing you can do for your baby is to get support for yourself. You deserve it and so does your little one.
Let’s All Think Like Einstein!
To end this article I’d like to return to the Einstein quote at the beginning.
How often I heard the phrases, “She’s a miracle,” or “It’s a miracle she survived,” in the months after my daughter’s birth.
Very early in her life I knew that my daughter, whether or not she survived, had touched so many lives, including mine, in a tremendously positive way.
We can choose to live our lives looking for problems or we celebrate the miracle that is our child’s life in whatever form it takes.
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Further Reading and Links to Research Cited in this Article
The King’s College Study of premature babies born at University College Hospital
Causes of Cerebral Palsy on the Website: Origins of Cerebral Palsy
March of Dimes: Cerebral Palsy
Premature Babies and their Problems by Patient.co.uk
© 2012 Yvonne Spence
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