Author:Willemijn Klein Winkel

Energy

Posted OnbyWillemijn Klein Winkel

Always tired and a lack of energy?

Many adult prematures have less energy, despite taking sufficient rest. This makes it often difficult for this group to meet all the expectations of the environment and someone has to make choices.

How does it work?

You can see the body as a battery. In the ideal situation our battery starts at 100%. During the day, someone starts doing things such as housekeeping, working or sports. These tasks cost energy and cause the battery to die. Certain tasks cost more energy than other tasks and also cause the battery to die faster. In the ideal situation you will be tired at the end of the day, but still have enough reserves. This reserve is important, because if there is an unexpected situation or a task, it can still be maintained.

In case of a prolonged overload or in case of many adult prematures, this battery often starts at a lower position. In some cases, it can even feel like 50% or lower. In this case too, someone will have to do certain tasks one day. If that is the case, someone will have to claim their reserves more quickly. This person will also be tired at the end of the day, but has no more reserves for the unexpected tasks or situations. If this situation occurs for a long time and someone keeps asking about it, there is not enough rest to build up any kind of reserve. This causes someone to survive and the body is purely concerned with survival and the body is under stress. This position is not helping and will not provide rest and reserves.

But how come?

There is no clear one-sided answer on what causes adult prematures. There are several things that can contribute to a lack of energy. In addition, causes may also lie in life at the moment. For example, illness, stress, poor sleep, hormone abnormalities etc. can also be causes of a lack of energy that are not necessarily related to premature birth. Therefore, stay alert to what is happening at the moment and get help on time from e.g. the GP.

The nervous system:

The nervous system may be part of the cause. In adult prematures, the nervous system is developed differently and reacts more quickly to stress. If someone experiences prolonged stress, the body is in a survival state. This position takes a lot of energy, so the body is purely concerned with survival. Long-term standing in this position causes the battery to run out slowly and not to supplement, because rest is very difficult to experience.

The rest metabolism also called Resting Energy Expenditure (REE):

The Resting Energy Expenditure (REE) has many names and is better known in the Netherlands as the rest metabolism (dust exchange at rest) or the energy consumption at rest.1

In short, how hard the body has to work to stay alive.

The rest metabolism pertains to the amount of energy a person uses to stay alive when someone is in mental and physical rest. In healthy adults, the body consumes about 1kcal/kg of body weight per hour in this state of rest. There is also a difference per part of the body. Thus, the liver, intestines, brain, kidneys and heart constitute about 10% of the total body weight, but require about 75% of the rest metabolism. The muscles require about 20% of the rest metabolism, but represent 40% of the body weight. Finally, fatty tissue requires less than 5% of rest metabolism, but usually represents more than 20% of body weight.2

Several studies have conducted studies on the influence of diet on rest metabolism in adult life in the first few weeks. Here are prematures with a low birth weight compared to those born on time.

It appears that the diet had the most influence on the subsequent effects in the first three weeks. When baby So the body had to work less hard to stay alive. When the diet was looked at at weeks 4 to 9 this had less influence. Part of the outcome was achieved by early growth, but the overall effect was mainly due to the direct effect of early nutrition.3

Another study comparing premature infants shows that higher fat and protein intake resulted in higher total rest metabolism and lower rest metabolism per complete body weight. In short, malnutrition in early life increases metabolism at a later age and consequently requires more energy to survive.4

Research has also been carried out on adult prematures with a low birth weight indicating that their rest metabolism per body weight is higher than in time-born. Socio-economic status, lifestyle, fat percentage, smoking had no influence on this. It is possible that prematures on the metabolic (dust) surface have more active tissue. This may ultimately have a positive effect on the prevention of overweight and hence various chronic diseases associated with it.5

In summary, the metabolism at rest in adult prematures depends on the diet in the first three weeks. This is higher compared to time-borns. In the base the adult premature consumes more energy. All other tasks will be added to this.

Sleep: breathing asleep

Sleep can also affect the energy level. Bad sleep can have several causes. It can be caused by stress, screen usage, irregular working, sleep apnea (breath stops). According to research, adult prematures have a greater risk of snoring, breathing problems due to lung damage and other sleep-distorting breathing problems. This may cause more fatigue during the day.6

Early birth disorders:

Other conditions such aslung damage due to premature birth, brain damage, heart problems and various other diseases arising from early birth increase energy consumption. The body must already make more effort to accomplish the simple tasks, which of course takes more energy than usual.

What can you do?

There are many different ways to work on the energy level. This can be done together, for example, with a psychosomatic therapist or a sleeping therapist. In any case, it is important to exclude physical causes and always consult the general practitioner in case of doubt. In addition, it may be good to talk to the environment about the energy level and to take these people into what is and is not possible. Also for the adult premature itself it is good to learn to recognize their own boundaries, although this can often be difficult.

Practically, resting on a regular basis (no telephone or television) can already help, especially in combination with an exercise such as autogenic training. This is a relaxation exercise in which your body gets orders like it can feel warm and heavy. For this exercise it is only important to listen and the body automatically knows what to do. Other exercises can also be helpful. Certain exercises such as autogenic training can help to charge the battery. By doing the exercise regularly and taking regular rest you can build up reserves in the battery. This will give you more energy and leave you at the end of the day.

Below you will find the exercises:

To the exercises
Energy
Sources:
  1. IC Nutrition Directive in adults (2024):https://directivedatabase.nl/directive/food on the intensive care on adults/energy metabolism monitors.html
  2. Mason, J. B. (2010)Nutritional assessment and management of the malnourized patient. From: Sleisenger and Fordtran likewise Gastrointestinal and Liver Disease.
  3. Matinolli H. et al. (2017)Neonatal Nutrition Predicts Energy Balance in Young Adults Born Preterm at Very Low Birth Weight.
  4. Matinolli H. et al. (2015)Early Protein Intake Is Associated with Body Composition and Resting Energy Expenditure in Young Adults Born with Very Low Birth Weight.
  5. Sipola Leppänen, M. (2011)Resting Energy Expenditure in Young Adults Born Preterm—The Helsinki Study of Very Low Birth Weight Adults.
  6. Sanchez-Solano, N. J. et al. (2025)Sleep-disordered breathing in a multiethnic cohort of preterm adoscelents and adults: Assessment of neonatal and sequential risk factors.

What can I take care of?

Posted OnbyWillemijn Klein Winkel

Many people ask us where to look after them.

Unfortunately, there is still little expertise in this area. It can therefore unfortunately be that getting (the right) care is difficult. But caregivers without specific expertise can also mean a lot. Refer your healthcare provider to the information on our website. The right information at the right care provider can be crucial to a process regardless of whether there is expertise or not. Many healthcare professionals want to learn, but they lack the handles and information. If you have any questions, healthcare providers may also contact us.

Because of the many questions we have an overview* made of healthcare professionals from different disciplines throughout the Netherlands:

Doctors:
Psychology:
  • Dolly van de Wint
    Practicewww.andersopeden.nl
  • Rianne van der EijkPsychology www.psychologypractice-eik.nl
  • Jacqueline JanssenPsychotherapy Practice Maldenhttps://www.psychotherapymalden.nl/This practice furthermore seeks a psychologist or psychotherapist who would like to be trained in the treatment of this methodology (see the website for more information).
  • IMH Netherlands(up to 16 years) www.imhnederland.nl
Physical therapy:

Unfortunately, we have no (yet) physiotherapists with this expertise in our file.

In case of lung problems due to premature birth, a lung physiotherapist can be helpful. They are trained to treat various lung diseases.

In many cases a psychosomatic physical or exercise therapist may be helpful. They are trained to treat physical complaints caused or aggravated by stress and emotions. They have no expertise on early birth, but many complaints from adult prematures overlap with other common stress-related complaints.

  • In Twente you can visit the Network Psychosomatiek Twente: https://www.networkpsychosomatiektwente.nl/index.php
  • Nationally there is the NPSN: https://npsn.nl/vind-a therapist/

You can also search for:

Find a physiotherapist
Occupational therapy:

Unfortunately, we do not have (yet) ergotherapists with this expertise in our file.

An ergotherapist can support, among other things, in doing activities by watching tools or learning the activity in a different way.

You can look here for an ergotherapist:

Find an occupational therapist
Logopedia:

Unfortunately, we do not (yet) have a logopedist with this expertise in our file.

A logopedist examines, advises and treats people who experience problems in terms of voice, speech, language, hearing and swallowing. We know that there are preverbal logopedists, but as far as we know they only treat young children.

You can search here for a logopedist:

Find a logopedist here
Somatic experimentation

We hear a lot about Somatic experiencing (SE). This method pertains to the completion of natural reactions to profound events and the understanding of feelings of impotence and despair. Due to unprocessed traumatic experiences, the natural rhythm, the regulation of the nervous system, is disturbed. Resilience is decreasing. This can lead to all kinds of physical, emotional and psychological complaints. By integrating that stored survival energy you restore the original vitality and resilience.

This method may be helpful, there is some knowledge and expertise about preverbal events within this method. There are a few cases known about early birth. However, this is different per therapist whether this knowledge is present or not. We do advise you to work with a BIG registered therapist, preferably someone with a physical or practice therapeutic background.

You can look for an SE therapist here.

Find an SE therapist

Are you a healthcare professional with early birth expertise and do you want to be in our overview?

Please contact us:

Contact

* We ourselves have no experience with these therapists. However, we do recommend looking for BIG-registered healthcare providers. However, it is up to you to find out a caregiver who you feel comfortable with.

Mieke Verberkt was interviewed by the Linda

Posted OnbyWillemijn Klein Winkel
Mieke Verberkt was interviewed by the Linda
Mieke Verberkt

Mieke Verberkt isinterviewedBy the Linda. Here she tells about the struggles in her life thanks to her early birth, the route to the correct diagnosis and pleads for an outpatient clinic where premature births can go.

Together with eight others she has the bandMieksestablished. Through music she has found a way to tell about her early birth and her struggle.

Click below for the full article:

To the article

Author original article:Florien de Bruijn

Want to know more about Mieks or wonder about her music?

To Mieks

Calculation problems

Posted OnbyWillemijn Klein Winkel
Adult prematures have a higher risk of math problems.

Early births are relatively specific at academic level (e.g. in language and arithmetic) less strong than those born on time. This is particularly evident in language and calculation problems. (Litt, J. (2005))

Mathematics consists of various mental processes consisting of domain specific skills and general functions. The domain specific skills ensures the understanding of numerical properties, understanding facts and carrying out calculations. The general functions provide the working memory, attention, decision making and that someone can perform consecutive mental tasks.

In the brain itself there are internal networks (intrinsic brain networks) that organize the brain on a large scale. In the case of prematures they are consistently different even at adult age. These networks are also called functional networks because their structure in the space of the brain overlaps with the networks that are usually active in carrying out tasks. Early birth influences these functional networks, which means that the networks work together differently. However, the brain can later partially adapt and thus compensate so that it can still keep the attention to the task and perform it.

In a study, they examined premature infants at the age of 5, 8 and 26 by an IQ test and an MRI scan. It has been investigated whether there is an association between the computing skills and whether the mental skills and internal functional networks of the brain have changed due to early birth in adults. This study has shown that both time-born and premature computing skills can predict mental outcomes and the organisation of the internal functional networks of the brain. (Büml, J.G. (2016))

Which parts of the brain do you speak to when calculating?

According to research (Taylor, G. (2009), there are several parts of the brain that contribute in their unique way to mathematics:

  • An area of the intraparietal sulcus (integrating and coordinating functions such as spatial insight and attention to space)
  • An area in the left gyrus angler (responsible for verbal processing of numbers. Symbols are recognized as letters and words)
  • The posterior superior part of the parietal system (responsible for focusing attention on a specific point in a room)
  • Frontal brain areas are also selectively activated in computing tasks
What problems do prematures experience in calculating?

The problems of arithmetic experienced by many prematures are not yet fully understood. It may be a result of a compromised development of the brain. In addition, a change in the organization of the brain can also be a possible cause of calculation problems.

It is assumed that the calculation problems in prematures are caused by disturbances in the domain specific skills and in general functions.

In dyscalculie (difficulty with calculation) there is mainly a disturbance in the domain specific skills. (Büml, J.G. (2016))

In the field of mathematics, the problems are mainly present when adding, subtracting, multiplying and dividing. There are also problems in visual spatial skills such as estimating space and distances.

Children with calculation problems may be more susceptible to problems with estimation of size, geometry, money or the concept of time. This would have major consequences for the long-term functioning of premature adults. There's been little research on this. However, we do hear stories about adult prematures experiencing such problems.

What are the consequences of calculation problems?

Difficulty with calculation is often accompanied by specific weakness in certain cognitive areas. It may in particular affect the following areas:

  • Visual spatial
  • The ability to use sensory information (hear, see, etc.) to control movements
  • Executive functions such as troubleshooting.
  • Global mental processing (understand general structure of a situation. First the details)
  • Motor skills and coordination
  • naming what's on a picture
  • Perceptual planning (using observation to plan actions or behavior) (for example responding to a ball coming towards you)
  • Verbal memory (temporarily storing verbal information such as words and numbers such as instruction or a telephone number)
Are there things that affect math?

There are many things that affect the computing skills of prematures:

  • Intraventricular bleeding (bleeds in the brain chambers)
  • Chronic pulmonary disorders(with ventilation for at least 36 weeks at the corrected age)
  • Postnatal treatment with steroids
  • Necrotizing enterocolitis (NEC) (infection and inflammation of the intestines)
  • Long hospitalization as a baby
  • Head circumference (a narrower head circumference is associated with low computing)
  • Retinopathy due to early birth (an eye disorder common to prematures)

There have even been several associations of worse motor skills in prematures (

Birth weight also plays a role. There is a relationship between birth weight where the scores of a calculation test between 8 and 12-16 years of age showed a greater decrease with a birth weight of

In short, the early identification of problems of calculation is therefore crucial. In order to reduce the long-term effects of computing problems, it is important to identify it in time and to improve the computing skills.

Calculation problems
Bibliography:
  • Litt, J., Taylor, H.G., Klein, N., Hack, M. (2005)Learning disabilities in children with very low birthweight: prevalence, neuropsychological correlations, and educational interventions.
  • Botting, N., Powls, A., Cooke, R.W., Marlow, N. (1998)Cognitive and educational outcome of very-low-birthweight children in early adolescence.  
  • Sullivan, M.C., McGrath, M.M. (2003)Perinatal morbidity, mild engine delay, and later school out comes.
  • Saigal, S., Hoult, L.A., Strainer, D.L., Stoskopf, B.L., Rosenbaum, P.L. (2000)School differences at adolescence in a regional cohort of children who were extremely low birthweight.
  • Taylor, H.G., Espy, K.A., Anderson, P.J. (2009)Mathematics formalities in children with very low birth weight or very preterm birth.
  • Bäuml, J.G., Meng, C., Daamen, M., Baumann, N., Busch, B., Bartmann, P., Wolke, D., Boecker, H., Wohlschläger, A., Sorg, C., Jaekel, J. (2016)The association of children's mathematical abilities with both adult .. . . . . . . . . . . . . .

Erasmus MC

Posted OnbyWillemijn Klein Winkel

The podcast ofErasmus MC includedis about the causes and treatment of early birth lung diseases. In this episode, lungarts Lidewij Visser of the Erasmus MC talks about her work in theexpertise centre for congenital and perinatal lung diseases. Together with pulmonary doctors Arnold Dunesveld, Lieke Kamphuis and four nurses, they treat adults with early birth lung disease. It is estimated that60,000 Dutch lung problemsbecause they were born too early. As a result they experience various complaints such as shortness of breath, tightness, coughing and quickly tired.

The podcast of Erasmus MC is about the causes and treatment of lung diseases by premature birth.
Erasmus MC In Recording

Family doctor podcast

Posted OnbyWillemijn Klein Winkel

The podcast ofGP podcastpassesBronchopulmonary Dysplasia, also known as early birth lung damage. Pediatrician Marco Krukerink talks about this with Lieke Kamphuis, pulmonary doctor of theErasmus MC. They discuss this form of lung damage based on the story of a patient reporting with respiratory problems and also premature birth in the history.

Read more about Broncho-pulmonal Dysplasia:

To the article
The podcast of GP podcast is about Bronchopulmonary Dysplasia, also called lung damage due to premature birth.

The experience of Simone

Posted OnbyWillemijn Klein Winkel
Simone
Photo: The sheep factory/ Simone
Would you like to introduce yourself?

I am Simone, 40 years old and was born with 30 weeks, weighed 900 grams, in the children's hospital in Utrecht. I ended up in the hospital for three months.

What happened after you were born?

The period after my birth was stressful, because my mother had pregnancy poisoning and only saw me on the 5th day. On the 10th day, I got blood poisoning and I had almost gone.

How'd your school time go? Did you run into trouble?

In elementary school I was taught to count and in the years before was checked for my motor development, because I walked a lot on my toes.

Has Your early birth had any influence on your career?

I don't really know, but I do know that I have a very strong perseverance and went after my dreams in dance!

Do you still run into things at social level (friends/relations)?

Yes I can sometimes feel very alone when I have no people around me and fear that people do not want to be with me and/or leave. My friends I prefer to have around me often and I sometimes find it difficult to say goodbye to them. In a love relationship this comes out even stronger, but I can now handle it well and also find confidence and security in myself. In the years before, I often had the opposite and could hardly commit to someone because I wanted to be free. And sometimes when I liked someone, that fear of abandonment came up again. Meanwhile I have become more powerful and calmer in myself and in social relations with others.

Are there long-term consequences that you notice from your premature birth?

I feel I'm having trouble entering into intimate relationships and connection. I experience this as a long-term consequence. Besides, it's hard to relax. I find that I am always standing on the road, that I work hard and keep going. This means that I have to keep an eye on the balance between work and relaxation. On a physical level, I have a lot of lung problems, so I've had bronchitis and asthma all my life at a later age. This makes me sick more often, more susceptible to colds and less effective in cold/moist weather. I see worse too. I've had a lot of research for this before. Eventually I notice that wearing lenses helps me and I now no longer experience any problems.

How do you deal with the consequences?

I exercise and dance a lot! This keeps me going, gives me pleasure and strength. Both physically and mentally. Over the years I have followed many therapies, trainings and coaching sessions to get to know myself, to be powerful in life and to cope with different situations in life.

What positive things do you notice from your early birth?

I'm a perseverant, a survivor. I work on my dreams. Besides, I dance and I have a strong body. My work as a dancer, dance teacher and motion therapist ensures that I create fun and connection around me. With this, I leave people in their power.

You made your own dance, you want to tell me more about it?

The solo "Still Here..." tells the story of my early birth and its physical and mental impact. It shows the loneliness of the birth, the locked up and the days after when the baby lies in fear and is delivered to herself. The power and wants that such a baby / baby has to have to survive, while at the same time it is not ready to leave the abdomen.

I once saw and felt these images in a session and that inspired me to make a dance about it. It also shows the strength and growth of me, to the woman I have become.

What do you want others to know about the consequences of premature birth?

The very first seconds, days, moments of contact between mother and child are the most important! Therefore, always try to hold your baby after birth, unless it fails for medical reasons. Even if it doesn't work out, make sure you get to see your own baby as a parent! Unfortunately, my mother never had this chance. That's a shame! The mother child relationship is the basis of everything in the beginning of life and this is certainly vulnerable with such a beginning.

Even though your baby is in the incubator: Touch your baby, be there for him/her, hug it, support it and build that bond with each other. The baby needs you, the parents! Even though it is there, the child can feel you, be present from your heart and give it love. You'll get there together.

Anything else you want to share?

Thank you for this platform and setting up the Adult Premature Foundation. A super beautiful and educational initiative!

Simone
Photo: Michel Schnater/ Simone during her dance

Do you have any questions, or do you also want to share your experience story? That's possible! Takecontactwith us.

How can I make my early birth discussable with my doctor?

Posted OnbyWillemijn Klein Winkel

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 theinformationon thiswebsiteso 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 takecontactwith us.

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

The GP

Exercises

Posted OnbyWillemijn Klein Winkel

In this blog you will find various exercises that help to reduce the tension in your body and strengthen the feeling of safety in yourself.

The exercises focus on breathing, body consciousness and mental rest.
This series is composed for adults born too early, but also valuable to anyone who wants to learn to relax.

All exercises have been addressed by Willemijn Klein Winkel.

Do you miss an exercise or would you like to leave one?

TakecontactUp!

Find them hereSpotify, Youtubeor listen to them below:

Exercises

Amber Bontekoe was interviewed by the National Healthcare Guide

Posted OnbyWillemijn Klein Winkel
I hope that future prematures will have the right support they need.

Our partner Amber Bontekoe fromLittle girl takes a triphas given an interview to theNational Health Guide.
In this she tells about her experiences as adult premature and the challenges she experiences.

Her story is supported by researcher Lisette Jansen's thesis. She claims that premature birthprolonged effectsmentally emotionally and socially. When a child encounters challenges at the age of two and consequently performs worse, this remains visible at a later age.
This is why it is important to improve policy and care around early birth. For example, by expanding later-age studies to map premature groups.

Amber Bontekoe was interviewed by the National Healthcare Guide
Amber Bottekoe of Little Girl Makes a Journey

Click below for the full article:

To the article

Author original article:Johanne Levinsky