Author: Willemijn Klein Winkel

Waar kan ik terecht voor zorg?

Posted On by Willemijn Klein Winkel

Wij krijgen van veel mensen de vraag waar zij terecht kunnen voor zorg.

Er is helaas nog weinig expertise op dit gebied. Het kan daarom helaas zo zijn dat (de juiste) zorg krijgen moeilijk is. Maar ook zorgverleners zonder specifieke expertise kunnen toch veel betekenen. Verwijs jouw zorgverlener naar de informatie op onze website. De juiste informatie bij de juiste zorgverlener kan cruciaal zijn voor een proces ongeacht of er expertise is of niet. Veel zorgverleners willen juist leren, maar missen de handvaten en informatie. Bij vragen mogen zorgverleners ook contact met ons opnemen.

Vanwege de vele vragen hebben wij een overzicht* gemaakt van zorgverleners uit verschillende vakgebieden door heel Nederland:

Artsen:
Psychologie:
  • Dolly van de Wint
    Praktijk Andersopvoeden www.andersopvoeden.nl
  • Rianne van der Eijk Psychologieprakijk de Eik www.psychologiepraktijk-eik.nl
  • Jacqueline Janssen Psychotherapie Praktijk Malden https://www.psychotherapiemalden.nl/ Deze praktijk zoekt nog een psycholoog of psychotherapeut die opgeleid zou willen worden in het behandelen van deze methodiek (zie de website voor meer informatie).
  • IMH Nederland (tot 16 jaar) www.imhnederland.nl
Fysiotherapie:

Wij hebben helaas (nog) geen fysiotherapeuten met deze expertise in ons bestand.

Bij longproblemen door vroeggeboorte kan een longfysiotherapeut helpend zijn. Zij zijn opgeleid om diverse longaandoeningen te behandelen.

Bij veel ‘vage’ lichamelijk of psychische klachten kan een psychosomatisch fysio- of oefentherapeut helpend zijn. Zij zijn opgeleid om lichamelijke klachten te behandelen die veroorzaakt of verergerd worden door stress en emoties. Zij hebben geen expertise op vroeggeboorte, maar veel klachten van volwassen prematuren overlappen wel met andere veelvoorkomende stressgerelateerde klachten.

  • In Twente kan je bij het Netwerk Psychosomatiek Twente terecht: https://www.netwerkpsychosomatiektwente.nl/index.php
  • Landelijk is er het NPSN: https://npsn.nl/vind-een-therapeut/

Er kan ook per specialisatie gezocht worden:

Vind een fysiotherapeut
Ergotherapie:

Wij hebben helaas (nog) geen ergotherapeuten met deze expertise in ons bestand.

Een ergotherapeut kan onder andere ondersteunen in het doen van activiteiten door het meekijken naar hulpmiddelen of de activiteit op een andere manier aan te leren.

Je kan hier zoeken naar een ergotherapeut:

Vind een ergotherapeut
Logopedie:

Wij hebben helaas (nog) geen logopedist met deze expertise in ons bestand.

Een logopedist onderzoekt, adviseert en behandelt mensen die problemen ervaren op het gebied van stem, spraak, taal, gehoor en slikken. Wij weten dat er preverbale logopedisten bestaan, echter behandelen zij voor zover wij weten alleen jonge kinderen.

Je kan hier zoeken naar een logopedist:

Vind hier een logopedist
Somatic experiencing

Wij horen veel over Somatic experiencing (SE). Deze methode richt zich op het alsnog afronden van de natuurlijke reacties op ingrijpende gebeurtenissen en het begrijpelijk maken van gevoelens van onmacht en wanhoop. Door onverwerkte traumatische ervaringen raakt het natuurlijke ritme, de regulatie van het zenuwstelsel, verstoord. De veerkracht neemt af. Dit kan leiden tot allerlei fysieke, emotionele en psychische klachten. Door het integreren van die opgeslagen overlevingsenergie herstel je de van oorsprong aanwezige vitaliteit en veerkracht.

Deze methode kan mogelijk helpend zijn, er is binnen deze methode enige kennis en expertise over preverbale gebeurtenissen. Er zijn een paar casussen bekend over vroeggeboorte. Echter is dit per therapeut verschillend of deze kennis aanwezig is of niet. Wij adviseren wel om met een BIG geregistreerde therapeut aan de slag te gaan, bij voorkeur iemand met een fysio- of oefentherapeutische achtergrond.

Je kan hier zoeken naar een SE-therapeut

Vind een SE therapeut

Ben jij een zorgverlener met expertise op het gebied van vroeggeboorte en wil jij in ons overzicht?

Neem dan contact met ons op:

Contact

* Wij hebben zelf geen ervaring met deze therapeuten. Wij adviseren echter wel om bij voorkeur te zoeken naar BIG-geregistreerde zorgverleners. Het is echter aan jou om een zorgverlener uit te zoeken bij wie jij je prettig voelt.

Mieke Verberkt was interviewed by the Linda

Posted On by Willemijn Klein Winkel
Mieke Verberkt was interviewed by the Linda
Mieke Verberkt

Mieke Verberkt is geïnterviewd door de Linda. Hier vertelt zij over de worstelingen in haar leven dankzij haar vroeggeboorte, de route naar de juiste diagnose en pleit zij voor een polikliniek waar te vroeg geborenen terecht kunnen.

Samen met acht anderen heeft zij de band Mieks opgericht. Via muziek heeft zij een weg gevonden om over haar vroeggeboorte en haar strijd te vertellen.

Click below for the full article:

To the article

Author original article: Florien de Bruijn

Meer weten over Mieks of benieuwd naar haar muziek?

Naar Mieks

Calculation problems

Posted On by Willemijn 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 (<34 weeks) at the age of 4 or 6 and a negative influence on calculation skills at the age of 8 or 12. (Botting et al (1998)) (Mcgrath (2003))

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 <750 grams. (Siagal et al (2000))

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 On by Willemijn Klein Winkel

The podcast of Erasmus MC included is 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 the expertise 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 that 60,000 Dutch lung problems because 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 On by Willemijn Klein Winkel

The podcast of GP podcast passes Bronchopulmonary Dysplasia, also known as early birth lung damage. Pediatrician Marco Krukerink talks about this with Lieke Kamphuis, pulmonary doctor of the Erasmus 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 On by Willemijn 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! Take contact with us.

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

Posted On by Willemijn 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 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.

The GP

Exercises

Posted On by Willemijn Klein Winkel

In deze blog vind je diverse oefeningen die helpen om de spanning in jouw lijf te verminderen en het gevoel van veiligheid in jezelf te versterken.

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?

Take contact Up!

Find them here Spotify, Youtube or listen to them below:

Exercises

Amber Bontekoe was interviewed by the National Healthcare Guide

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

Our partner Amber Bontekoe from Little girl takes a trip has given an interview to the National 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 birth prolonged effects mentally 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

A premature is infinitely expensive

Posted On by Willemijn Klein Winkel

It is often said that a premature is expensive and that there are many costs involved. But how much does a premature cost? And how much does a premature cost in the long term?

How much is a premature during hospitalization?

First we start with the annual healthcare costs in the Netherlands. Research has been carried out on early birth care expenditure in 2019. This expenditure amounted to EUR 132.1 million. This represents about 0.14% of total healthcare expenditure for Dutch healthcare. Most of the expenditure, EUR 125 million or 94%, goes to hospital care.

Most of it goes to newborns in the first year of life. This consists of 92%, the remaining 8% goes to children and teenagers. There are also differences in care expenses between boys and girls. In boys, spending is 55% and in girls 45%.1

The average costs in the Netherlands of extreme premature birth have increased over the years. This is what researchers found when looking at the level of hospital costs of premature births between 1999 and 2015.

The average cost of hospitalisation was:

  • For the whole group of premature births: €126.350

Average cost per period:

  • 1999 to 2005: €110.600
  • 2006 to 2009: €119.350
  • 2010 to 2015: €138.800

And if the average cost of babies with and without BPD (Bronchopulmonal Dysplasia) or CLD (chronic lung disease) are compared:

  • Babies without BPD or CLD: €85.050
  • Babys with BPD or CLD: €188,650

The average cost of care for premature births increased between 1999 and 2015. This may have to do with a higher survival rate and because babies can be born earlier. Hospitalisation and total cost up to the corrected 1st and 2nd year of life were higher for children with broncho-pulmonary dysplasia and CLD than for children without any of these conditions.2

How much is a premature at the age of five?

In a European study, the costs were examined in the 5th year of life. Data were collected from Belgium, Denmark, Germany Estonia France, Italy, the Netherlands, Portugal, Poland, the United Kingdom and Sweden.

From a social point of view, average costs in Poland are high. €4.380 and the lowest in the Netherlands with hindered 508. The main share of costs associated with early birth during the 5th year of life are indirect costs (e.g. due to absenteeism of parents). For the vast majority of countries these indirect costs are more than half of the average costs of early birth. In all countries, the study showed that there are more costs associated with a shorter gestation period <28 weeks, except in Belgium, Estonia and Germany. In Denmark, France, Italy, the Netherlands, Poland, Portugal, the United Kingdom and Sweden higher costs have been demonstrated in an extreme premature birth.

When considering the social costs per pregnancy compared to a duration of 30-31 weeks, the researchers find that:

  • <26 weeks €2.756
  • 26-27 weeks €752
  • 28-29 weeks takes an early birth €657

When other factors are included in the costs such as birth defects, post-birth health problems, male gender and low-educated mothers, there is something different per point:

  • Congenital disorder costs €3.113
  • Health problems after birth cost €3.234
  • Male sex cost €1.227
  • Low-skilled mothers €625

As soon as certain diagnoses are omitted, such as bronchopulmonary dysplasia, one or more health problems after birth and congenital abnormalities, additional costs are reduced:

  • <26 weeks €341 less
  • 26-27 weeks €87 less
  • 28-29 weeks €31 less

From this research came among other things that the costs of early birth increase as a child is born earlier. Children born at <26 weeks, 26-27 or 28-29 weeks cause higher social costs than children born at 30-31 weeks. These costs were therefore even higher in the fifth year of life. Furthermore, there were also higher costs for boys which follow the line in research where boys have a higher risk of neurological and motor problems.3

How much is a premature at the age of 18?

There are no Dutch figures on the long term costs above the fifth year of life. However, there are figures from England and Wales that have studied children under 18 years of age. They have examined the additional costs in pounds of English per child born prematurely. They have included the degree of prematureity. These costs shall be borne by the seriously premature births. £103,831 and for those seriously premature £136,790. When compared to those born on time, the additional costs per prematurely born child are up to the 18th year of life £22,764.4

In summary, an early birth is more expensive than a birth that takes place on time. It still pertains to the country in which the child was born and to other factors such as certain diseases. An early birth is expensive in itself and these costs remain present during the life of a premature.

A premature is infinitely expensive
Bibliography:

1. de Weerdt, A.C., Gouwens, S., Koopmanschap, M.A., van der Meer, A., Kommer, G.J. (2022, June) Early birth, underweight and/or growth delay, Healthcare expenditure. Fetched from RIVM: https://www.vzinfo.nl/early birth-underweight-and-growth retardation/care expenditure

2. Houben E, Siffel C, Overbeek J, Penning-van Best F, Niklas V, Sarda SP. (2021 Jan-dec; 24(1):1290-1298). Respiratory morbidity, healthcare resource use, and cost burden associated with extremely premature birth in The Netherlands. Taylor and Francis group: https://www.tandfonline.com/doi/epdf/10.1080/136998.2021.1999664?needAccess=true

3. Kim, S.W., Andronis, L., Seppänen, AV. et al. (2022). Economic costs at age five associated with very preterm birth: multinational European cohort study. Picked up from Pediatr. Res. 92, 700–711: OJ L 347, 20.12.2013, p. 671.

4. Lindsay J. Mangham, Stavros Petrou, Lex W. Doyle, Elizabeth S. Draper, Neil Marlow. (2009, February). The Cost of Preterm Birth Throughout Childhood in England and Wales. Pediatrics picked up: https://publications.aap.org/pediatrics/article-abstract/123/2/e312/69430/The-Cost-of-Preterm-Birth-Throughout-Childhood-in