An experience story about what NAH (Non Congenital Brain Injury) can do with you

“I still love apple pie” A title of a handbook written for children and young people who have Non Congenital Brain Injury (NAH).

What is the difference between Non-Congenital Brain Injury (NAH) and Congenital Brain Injury

We know Non Congenital Brain Injury (NAH) and Congenital Brain. The difference between these two is that Non Congenital Brain Injury occurs because something happens to a person in his or her life and Congenital Brain Injury there is damage to the brain that has arisen from the body, for example oxygen starvation after birth. It gets a little clearer when you see this overview.

The differences

Non Congenital Brain Injury (NAH) is a damage to the brain that can occur due to, for example, the following causes:

  • mishap
  • stroke
  • cardiac arrest
  • brain disorder
    The causes are divided into two groups, namely craniocerebral trauma and non-traumatic brain injury. Traumatic brain injury means that injury has occurred from the outside, such as an accident where a concussion or brain contusion may occur.. Non-traumatic brain injury often arises from the inside of the body, for example, from a stroke or oxygen deficiency, epilepsy.

    Most striking feature: A break in the lifeline. The experience is often that one runs into the fact that there was a human being before and after the onset of brain injury and the acceptance plus processing of brain injury is often problematic. Your life has suddenly changed. Also for the partner and family around them. One sees visible and invisible consequences. Visible consequences can be, for example:
  • epilepsy
  • headaches
  • difficulty in communication
loss of strength in muscles

For example, invisible consequences can be:
  • concentration problems
  • be irritated more quickly
  • be anxious
  • shutting off from the environment
  • weariness
  • behavioural change

Congenital brain injury is a damage to the brain that can occur due, for example, to the following causes:

  • postnatal
  • oxygen starvation
  • infection

NAH - Experience story

Madeleine Bosch

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When Not Congenital Brain Injury (NAH) and its consequences suddenly appear in the life of your child and you. It turned our world upside down. Below you can read the experience story of us as a family what NAH does to your child's life and what it does to you personally and all family members.

April 2014 - It seemed like an ordinary day

It's April 2014. Our youngest son plays at a boyfriend's house and falls from top to bottom of a staircase on the back of his head and neck. Our son remembers falling down the stairs, but after that all he knows is that he was sitting on the couch. That spacer has lost it. The fall made him unconscious for a few minutes. When he wakes up, it seems to be going a little. He gets put in the bank and gets some drinks and chips and the mother calls me to tell me that this accident happened, but he's getting better again and asks if our son can come to a birthday of a classmate who lives in the neighborhood.. I give permission, since I assumed that the mother in question was able to properly assess the situation at that time. But the situation quickly changes if at some point the doorbell rings. I open up and see my little boy standing in front of the door with the boyfriend's mother, who tells me that our son threw up. At me all the alarm bells went off immediately when I saw my son. Not only was he pale, he was extremely slow.. His eyes were very faint and he wasn't alert. I immediately called the GP and had to come right away. Along the way, it threw up a few times. Also at the GP has vomited several times. The general practitioner did not trust and sent us to the emergency room in the hospital. He threw up a couple of times in the hospital. He was admitted for 24 hours and awakened every 2 hours. At that time, concussion was diagnosed. The general practitioner suggested a CT scan, but the hospital failed to do so and found the disadvantages of X-rays at that time important that it is not healthy for a 7-year-old child. As parents we didn't really take that advice back then, but maybe it all fell along. He should stay for 24 hours and get back home the next day. The next day he was indeed allowed to go home and he went pretty well. He had to rest for another 2 weeks from the doctor and we had to pay attention to how it developed for 24 hours at home.. The first 24 hours went well, but a few days later the recovery changed. Our son grabbed his neck from behind with thumb and forefinger and complained of neck pain and headache. He also had a small bump on the side of his head. Furthermore, he said he could not lie flat because he felt dizzy. I decided to call the GP and I could go to the next day. The next day I did my story there and I was told that these kinds of complaints fit the consequences of a concussion and that he needs to recover for a few weeks. I took it and went home. But the situation did not change after two weeks. He kept the complaints and I decided to contact the GP again.. Again I was allowed to come with him and again I was told that complaints belong to a concussion and that some people can keep complaints for up to six months. I went back home with a bit worried, but the doctor said it was part of it.. It needed time.. But the situation only got worse. In addition to the existing complaints of headache and dizziness and neck problems, my child's behavior gradually changed. I also got complaints from school that the teacher didn't know him like that. He regularly had a conflict with other pupils or the teacher and where he was previously spontaneous he turned into a silent retired boy. I did not leave it there and contacted someone I know from education and helping students who are ill for a long time. When I was doing my story, he asked me if I'd ever thought about NAH. “NAH, what is that? ” , I asked. He suggested to send me an information bulletin by email describing in detail what NAH is and how to recognize it. He also suggested keeping a list for a month of complaints and how often those complaints occur and then showing the list to the pediatrician. Just aside... our son was running with the pediatrician for other medical matters. I decided to take his advice to heart and made a schedule. I also read the extensive book he sent me. I was shocked when I read how many characteristics I recognized in my own child. Would it be NAH?

A few weeks later, we were at the pediatrician. I showed you the schedule and told me that our son often suffered from anger and tantrums and that we were worried about his body and behavior. The pediatrician saw the schedule and suggested making an EEG (examination for establishing Epilepsy). The rash was good. Our son had no epilepsy. But since he had so many other complaints, such as headaches, neck problems, fatigue, the pediatrician suggested that we refer to a rehabilitation center for more research and support in this whole process. Unfortunately, there was a waiting time. After five months we were finally the turn. Meanwhile, the complaints were not reduced and it actually just went downhill with him. We got a team of a rehabilitation doctor, orthopedagogue, social worker and a psychologist. During the examinations of the psychologist, there was a suspicion that because learning was not going well at school either that there might be a learning disadvantage.. Several tests were conducted in the field of development and after a while it became clear when the results came in that our son showed a stagnation in development and was less able to learn than one initially thought. We were advised to take him to special education. Then he would be able to learn at his own level and no longer have to walk on tiptoe. We also get support for home to offer our son structure for his daily program. We went along with this decision and our son started special education in grade 4. During that period, I was regularly called by the school that our son was so tired that he could not last. Also, he regularly got dizzy or subsided. I rang the bell at the rehabilitation doctor within the school team there and discussed my concern about his dizziness and overturn. Epilepsy was already excluded, but what else could it be? It was decided that he would be sent to a neurologist, to check a throat, nose and ear doctor for hearing and vestibular organ and we had to go to an eye care center to see if there was any poor vision. At the neurologist all his reflexes were examined. At the Achilles tendon on one of his legs, the rehabilitation doctor at the rehabilitation center had already noticed that it was not quite right. He trembled, so that if our son puts the foot down while walking he claps with the foot. The neurologist said that he could not see it during the examination, and according to him, the reflexes were good. We suggested he, given the complaints of a headache, have an MRI scan done. A month later he went under the MRI Scan. The rash was good in terms of brain injury. According to the neurologist, there was no talk of NAH, but it did discover something else, namely an arachnoid cyst. This cyst was most likely in his head from birth and was nicely encapsulated. So he could not take care of these complaints and not cause problems. Still a bit worried about the fact that there was something in your child's head that shouldn't be there, let's rest. A visit to the Eye Care Centre resulted in our son's eyes not working well together and there was a suspicion of a rupture in the vestibular organ. He got prism glasses. In the hospital at the otolaryngologist a CT scan of the ears was made and a vestibular organ study was deployed. The scan showed that he had a normal development of ears in terms of predisposition, but that the problem was in the vestibular organ. Indeed, there was a fracture and this is usually caused by an outside accident. Before that, he was given medication three times a day and prism glasses. This should reduce the complaints of dizziness, toppling and falling out. After some time, those complaints did indeed become less. The fall over is almost completely gone. But we were still regularly called by school that he did not last the school days and was very tired. I again applied for a conversation with the rehabilitation doctor at the school and asked if I could maybe be referred to another neurologist for a second opinion. I was familiar with another neurologist who has been seeing our daughter for some years about her epilepsy in SEIN (Epilepsy Centre). I get a referral and soon after we meet. Again we discuss the complaint picture again and the suspicion is still not with NAH. The term NAH is mentioned, but the neurologist thinks it is advisable to send us to Utrecht because there is an even better MRI scan in the hospital. We go along with the advice and shortly thereafter we go to Utrecht. In Utrecht at the neurologist during the conversation emerges that he suspects that our son has migraine. NAH couldn't be, according to him. We're going back to SEIN. There we tell that Utrecht thinks of migraine. The neurologist says he knows a pediatric neurologist in Apeldoorn who knows a lot about child migraines and that we should go to her. After a month we can go there. Meanwhile, the trajectory in the rehabilitation center has been completed and there is no diagnosis, except for a concussion with traumatic injury, but it is not really conclusive. We're in Apeldoorn with the neurologist. The woman is very understanding and has a listening ear to the history of our son. While telling our story over the past 1.5 years, she does not come to the conclusion that our son would have migraine. She has serious suspicions that he might have NAH. The only way to establish a diagnosis there and that unfortunately is not certain is to start a new rehabilitation course and then in Apeldoorn at a rehabilitation centre that has a lot of experience with NAH. We know this is going to take another 1.5 years, but we want to know what happened and where our son stands in terms of development and how to do it.. So we decide to do it. It's being re-tested in the field of development, and these tests they used there were even more extensive. It emerged that it is established that our son suffered brain damage as a result of the accident. There has never been such a high score in terms of deviation performaal and verbal. Usually it is around ten. With our son, it was over 30. Also, a rehabilitation doctor went to re-examine him. Who found that on both legs he had a deviation in the reflexes of the Achilles tendon. He had to direct orthopedic insoles for walking. Also got that occupational therapy there and also at school it was deployed. The physiotherapist also had to work for some time on his overall condition and diagnosed PCS (Post Commotional Syndrome). This is a syndrome in which complaints last longer after concussion. In addition, he had to regain confidence in his body. We gradually saw that he started to refurbish and school also went a lot better, because we got the advice to release him one day a week, so he could refuel. Soon after that, our son was diagnosed with NAH and the rehabilitation doctor indicated that we would get support in that area for him and parents.


Image of Maddy Mazur via Pixabay

Despite the long way, it has done us well that we were allowed to do this again in another place with people with more knowledge about NAH. Our son has now finished special education and has reached a level base where only a job would be possible for him.. Now he is back in a regular high school with us in the village since last September and does basic. He's doing very well. Now, as parents, we also know how to deal with it. No day is the same, because living with NAH has changed for him and also for us, but giving your child the confidence that he may be there is so invaluable! I'll never forget that we were with the rehabilitation doctor and she told us the diagnosis. She said that one of the most important features was when there was a breach in the lifeline and it was clearly seen in our son before and after the accident.. It is that fracture that, unfortunately, is irreparable. It's not to make, she said, broken. You will have to accept that the life of your son and for you as parents has changed and is lasting. We drove home and our son said, “Mom, it's not broken, it's damaged.” It sounds so broken, if something is broken and I don't want it, because then it is final and nothing can be done about.” Damaged sounds better, something rather, said that.” I was very concerned about how he was looking for the words.. It was true what he said.

Damaged but not broken

Damaged is not broken

Broken, broken, broken, isn't whole anymore

Damaged sounds better, otherwise,

more filled.

As if there's a little piece left

of the old, which is so missed

by those and those close to them,

the great grief that you have every day

on the face.

But broken it is never, before damaged, sadness

Yet one day there will be a moment when we

will say to each other, it is not broken, but it is putting your hand in that of the other and together

fight for the beautiful, its future.

Madeleine Bosch

About me


Madeleine Bosch

Yoors blogger, mother of three children. Loves nature, music, writing, cooking, art and sharing experiences. Do you want to follow me? Look at my website


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