Category: General information

In many cases, the GP is the first contact point for physical or mental complaints. He or she listens to the story, asks questions, conducts research and can refer where necessary. So there is a good chance that you will start with the GP at the moment you run into long-term consequences.

It can be difficult to discuss it, because long-term consequences overlap with all kinds of other physical and mental complaints. This can cause a lot of noise and uncertainty. You as a patient experience the complaint and want to do something about it. On the other hand, in a short time (often 10 minutes) the GP must make an assessment of what is going on and what is the best route. As it were, the general practitioner must filter out a lot of information from a patient and determine why this fits in with a particular condition in order to arrive at a diagnosis. If there is a complaint involving a lot of overlap with other diseases, this is very difficult, but not impossible.

Some general practitioners also lack knowledge of the long-term consequences of premature birth and the patient is told that this cannot be the case. General practitioners indicate that they pay particular attention to the period immediately after birth. In their opinion, if a child has developed normally, it is not much different from other children. In prematures, they only see a slightly higher risk of lung problems or development problems (both physically and mentally).* There is therefore often insufficient information on the long-term effects of the general practitioner. Partly because it is generally unknown to general practitioners what changes, for example, around puberty or later on in prematures.

This can cause frustration on both sides in the office. The patient doesn't feel heard or taken seriously. The GP has a patient who is not satisfied and does not receive the right care. This can make a simple problem unnecessarily complex.

Anyway, how do you make this negotiable?

It might already help to get your medical records at the hospital where you were born. This file should be kept for a minimum of 20 years by law. In some cases, it may be chosen to store it for shorter or longer. Making an effort is always worth it. Because you always have the right to request your medical records.

When you are at the GP You can start the conversation by saying that you were born too early and that you suspect you have complaints. Also mention that you have heard about the long-term consequences of peers or have read about them. Always refer to the source where you read it. In addition, you can often ask your doctor for extra time. This way the GP has more time for you and you can also tell your story in peace.

General practitioners may have an interest in the following information:

• How many weeks were you born;
• What your birth weight was;
• Complications in pregnancy;
• Whether you are part of a multiple;
• How long you've been in the hospital;
• A short summary of, for example, 2/3 phrases of what happened at the time in the hospital (e.g. surgery/diseases);
• What complaints do you now notice as a result.

You can also refer your GP in the conversation to the information on this website so he can read in. The information is compiled on the basis of scientific articles and the expertise of specialists such as doctors, psychologists, physiotherapists, etc.

But what if all this doesn't work and you're stuck? Then maybe a second opinion at another GP can help you.

For questions or need more information please take contact with us.

*Response of various general practitioners from a survey on the awareness of long-term effects by early birth.

Early birth is a chronic condition. Research has shown that an early birth has consequences even in adulthood.

Thus adult prematures experience more often:

• Cardiovascular diseases
• Lung problems
• Neurological problems
• Mental problems
• Metabolism problems

Cardiovascular diseases

Prematures have a higher risk of developing cardiovascular disease early. However, there was no apparent increase in having a stroke or coronary heart disease such as heart attack.

Lung disorders

Pulmonary physicians from Erasmus MC, however, see that many prematures have had lung problems unnoticed throughout their lifetime. They have established the CPL poli where people can go if they have a (suspected) lung disease due to their early birth like bronchopulmonary dysplasia. The doctors indicate that in many cases they can treat this condition well with medication. On the page Bronchopulmonary Dysplasia find more information about the condition and the CPL poli.

Neurological problems

Prematures can experience various neurological problems. For example, they may have more problems with plans, calculations, executive functions (planing and steering activities), running short-term memory, working memory

In a large part of the cases a person has suffered brain damage or injury as a baby, but thanks to the plasticity of the brain they have been able to develop normally. In these cases no differences were found in the functioning of prematures and on time.

Mental problems

In the area of personality prematures are more often cautious, feel less negative emotions, are more often shy and dutiful. They also show less criminal or risky behaviour and less smoking, drinking or using drugs.

However, prematures experience more difficulty in engaging and maintaining friendships and relationships, possibly because of their withdrawn character. They also experience more anxiety and depression during the transition from child to adulthood.

Metabolism

In the area of metabolism, researchers see that premature type 2 diabetes is more common at young age. Early birth can also have a detrimental effect on kidney development. It can disrupt the further growth of a kidney.

What's the cause?

It is quite possible that the above cases can be explained by several things. First, we look at the pregnancy itself. Here are the genes that someone gets from their parents and grandparents an important influence. In addition, any mental problems or physical disorders of the mother have a major influence on a baby during pregnancy. Even lifestyle and the socio-economic status of the parents are important to the baby.

When a baby is born prematurely, all growth and development processes are disrupted. This must happen suddenly in a stressful irritating environment. It still matters how many weeks a person is born. For example, the brain with 34-35 weeks is not mature enough and the majority of growth still occurs in the last 5-6 weeks of pregnancy. So also the moderately early-born can suffer from this. This while the lungs at 34-35 weeks are already relatively mature and baby disregarded. However, the alveoli still have to develop, so it remains a risk factor for later lung diseases.

Conclusion

These problems therefore arise at a very young age and in many cases persist until adulthood. This is why it is very important to focus attention on this issue. It has to be taken seriously. Many prematures can function relatively normally, some even without complaints. However, there is also a large group that does experience complaints and finds out later. This while they've been carrying a certain complaint their whole life. It is necessary to consider premature birth as a chronic condition.

Also because of the greater risk at later age of developing various diseases due to an early birth which occur only at later age.

It is also recommended for caregivers in the broadest sense to take with them the birth story, pregnancy duration and birth weight of a person by default.

Source: Raju TNK, Buist AS, Blaisdell CJ, Moxey-Mims M, Saigal S. (2017) Adults born preterm: a review of general health and system-specific outcomes.

You were born premature, so what? Often prematures receive follow-up from the hospital where they were born. Today it lasts until the 8th year of life. Then the aftercare falls away. Just during puberty and adolescence, much changes in the body and mentally. Many adult prematures say they miss a follow-up at a later age, because they then encounter their complaints or only start developing complaints during that period.

Many adults who were born premature experienced complaints in different areas. Thus they can experience various mental and physical complaints. You can read more on this page Long-term effects. Nevertheless, adults associate their early birth with words such as fighter, strength, perseverance. Family often describes it as a happiness or a miracle that their baby has been able to develop with the necessary challenges due to its prematureity. Unfortunately, society still describes it too often as fragile, difficult and as a restriction.*

Partly because of this there is often little understanding for this group and they do not get the attention and care they deserve. We want to break through this stigma and see with the prematures what they need in their lives.

*Girard-Bock C. et al. Acta Paediatr. 2023 July

Welcome to the website of Stichting Adult Premature,

With our foundation we want to create a place for adult prematures where everyone can feel heard and understood. This foundation has been set up by prematures who stand for prematures and that is what we support in our mission and vision. On this website you will find information about the long-term consequences of early birth, what you can do to deal with any complaints and where to go. This information is based on scientific articles and various experts such as doctors, physiotherapists, psychologists etc. We try to make the texts accessible to everyone so that you can understand it yourself without medical training and share it with your treatment.

Do you miss information or do you have questions?

Take contact with us.

On behalf of the Board of Stichting Adult Premature,

Milou Klein Mentink hampered by Zoest and Willemijn Klein Shop