Nina's story: Nina's Story

Nina one day afther birth together with Nikita and Stefano

I shall try to tell Nina's story in English. That's difficult for me, because I don't know all words. Please correct me when I use the wrong words.

JUNE, 28 2002.

I was 38 weeks pregnant and in the afternoon I don't felt well. It was a strange feeling; I still can't tell what the feeling was like. I lied on my bed for a moment, but it wasn't helping me. I went downstairs and watch TV for a while with Cecca. When it was 16.30 hour I had to see the bathroom and when I grab the door handle, I feel a snap in my stomach. When I looked to my pants it was all red. I with crossed legs to the living room and my oldest daughter, Léonie, started to scream. I said to her to stop screaming and to go to the neighbors. André came immediate. He calls 112 and in 15 minutes the ambulance was there. The brought me to the hospital and it was 17.00 hours when I arrived there. They made an echo and I saw her heart beating. Very slow, but she was still alive. Then they took me to the surgery. I got a caesarian. Nina is born on 17.17 hours and she was dead. They revive her within a minute, but then she started to convulse. When Theo arrived in the hospital he saw 12 doctors and nurses around Nina's bed. Theo understands that Nina wasn't ok. When I recover, I laid on an improvised intensive care. A doctor next to my bed and every minute he measured my blood pressure. Later, I heard I had 1 liter left. I got 12 bags of blood. The hospital in Gouda took Nina to Leiden because Gouda had no baby intensive care. On Sunday June, 30 they took me to Leiden, because Nina wasn't ok. And you can see that on the pictures with Stefano and Nikita. Before the nurse brought me to Nina, Theo and I had a conversation with a pediatrician. He told us that Nina had a brain injury. She had an injury on the basal cores. With these cores you can navigate the loco motor system of your arms and legs. Nina couldn't swallow or suck. She should live her life like a vegetable plant. She had epilepsy. She never should walk; talk and she never recognize one of us. Later on she would be spastic. When I saw her later on, I saw a little sick girl on variety of apparatus. So small and ill. The apparatus watch over her hearth and breathe. She couldn't breathe by herself. On July, 3 I went home and Nina had to stay in Leiden. We went to see her every evening and sometimes during the day. One day I got a phone call from the hospital. The nurse told me that Nina drinks al little bit. They had to hold her in a special position to let her drink, but she did it. I was so glad and thought: 'Now we have to wait, what she is going to do with the rest". Nobody could tell us more, but I believed in her. I was very positive and Nina felt that. Father 2 weeks Intensive Care, Nina moves to High Care. She drunk by herself in a special position, but that doesn't matter. Nina lost the apparatus which gives her air. Now she breathes by herself. She was tired very quickly, so the rest of the bottle went by stomach pump. On July, 15 Nina came back in Gouda. It was easier for us to go to her. Cecca saw Nina for the very first time. In Leiden she may not go to Nina, because she hasn't had the chicken pox. She still had difference medicines for epilepsy. Phenobarbital and luminal and she had still a tube in her nose for food. On July, 20 she drank for the first time a whole bottle. The nurse draws a big flag on her status. On that page you can see what see had drunk the night before and her weight. One day Nina pulls the tube out of her nose and I asked the nurse to leave it. Nina hated the tube. Since that day Nina drunk much better and she never got a tube again. On another day I told the nurse that Nina did do her best and we were invited for a talk with the doctors. There was a pediatrician, a charge nurse and a doctor. They asked us what we knew about Nina. We told them. They beated a longing of alleviation. They were afraid that the bomb would crack in our family. On august, 1 Nina should be come home, but she was crying for a couple of days and that afternoon she got an insult. She didn't come home. On august 6, Nina finally came home after we made a shopping list of appointments and Phenobarbital for the epilepsy.

Nina's first years.

Nina had suffered from her intestines. She couldn't discharge. The doctor told us to use a few drips of oil trough her milk, but that doesn't work. After 8 months of worry, we got movicolon and that’s works perfect. She still uses it. Nina didn't have any insults at home. In October we had to visit the neuropathies. She told us that we had to try to stop with the Phenobarbital. She didn't tell us that these children had to become totally dry. Nina got 1.8 ml Phenobarbital and every 2 weeks we put 0.1 ml off. 0.1 is nothing, but when you had seen her reaction... She totally tense up. When that happens the first time, I was totally in panic. I called the hospital and had a talk to the neuropathies. She told me that it was normal and I got angry that she didn't tell me about tense up. I told her to tell always the parents what can happen when you stop with medicines. The date we put off 0.1 ml Nina was totally tense up and in the course of the week it gets better. The week after she was better until next Monday when we had to put another 0.1 ml. So we had a bad week and a good week until she lost the 1.8 ml. She got her last 0.1 on December, 31 2002. In October that year Nina also went very ill. She couldn't drink a bottle anymore so I had to feed her with a pipette. I didn't want her back in the hospital with a tube in her nose. She drunk 100 ml and it cost me 2 hours to feed the 100 ml. I carry on with the pipette until January 2003 and one day I thought, I do the milk in the bottle again. Turn on the TV and I'll see what happens. Of course always in the back of my head I was afraid of the epilepsy, but I tried. I laid her on my legs and let her watch The Teletubbies and..... she drunk. Finally! The TV deduces her from the bottle. When she stops drinking, she had 10 or 20 left in her bottle. That what she left, I did with the pipette. Now I was ready in 40 minutes. Now Nina watches TV. When we are on holiday, she goes to live music evenings. Loud music doesn't matter to her. She is only dancing on her manner. When Nina was 6 months old, I could with al lot of difficulty, to make her at laughing. I practiced it every day and one day she makes also noises when she laughs. Nina doesn't have much strength. I practice every day one or two times. Slowly she became stronger, but sit up or crawl she couldn't do it. Her neck was so weak that her head always fall to the left. By much practice Nina becomes stronger, but with her first birthday, Nina still couldn't sit up by herself, crawl or stand. Also we had to think about the future. A highchair for example. I found one. The chair could upward and below. I could topple the seat when her head was too heavy for her. On June, 28 we celebrate her birthday. It was a special day for a special girl.

In her second year we kept practice. I did it every day. She got ones per fortnight physiotherapy. That was, of course much too little. But because I practice so much, she makes progress.
The doctors in Gouda and Leiden dared nothing more to say. Every time I was there for a visit, Nina could do more things than the last visit. In November 2003 we asked for a walker and a stand-up table, I don't know the right word for it. It's a table where a child stands in. The legs and hip are fixated. I hope someone know what I mean, so that I can use the right word. I thought it spends a few months, but it took 7 months before we had both things at home. When I knew this before, I asked much earlier for device. When you get a child with a handicap, you are thrown in the deep end and you must learn to swim by yourself, nobody told me anything about aid and where and how to get it. You have to find out by yourself.

Hyperbaric Oxygen Therapy.

Theo and I heard of hyperbaric oxygen therapy on the end of 2002. We saw a news program called Hart van Nederland. I'd searched the internet but I couldn't find anything. In 2003, I saw an another item also at Hart van Nederland about Charissa van Rijssen who follows the hyperbaric oxygen therapy at the Ocean Hyperbaric Neurologic Center in Lauderdale by-the-sea, Florida. This clinic is owned by Dr. Neubauer. You can visit his website at www.oceanhbo.com Don't forget to see the case study videos. I send an e-mail to the clinic and they send me an information packet and a video. These are the same videos as I had seen in the case studies, but more extensive than on the internet. When I saw the case studies for the first time, I was very impressed. Theo and I deepen us in the hyperbaric oxygen therapy and made the decision that this was something for Nina. But it was very expensive. The cost for this treatment were $150.000, -- and our insurance wasn't compensate it. We didn't have the money and as a mother of 6 children, you can't leave. We had to go with the whole family. Then I heard a story about a doctor from Belgium, Dr van Poucke. He visited the clinic in Florida and he was very impressed about the hyperbaric oxygen therapy. I send him an e-mail, but he didn't react.

At that time I had a very good contact with Greetje, Charisa's mother. She told me that Dr van Poucke was very busy and she heard that there probably will be a clinic in Eindhoven. In December 2004 I heard there had been an item about hyperbaric oxygen therapy on TV called Business Class. It was about a girl who wanted to start with hyperbaric oxygen therapy in Florida, Myrthe. I visited her website and there I found an e-mail address of a hyperbaric oxygen center in Zwijndrecht. I send them an e-mail and the next day I had a message from them. I had to contact Karin Heirstraeten and I called her. We made an appointment for January, 29. That day I took all the documents she asked for and we had a nice conversation. Nina's opportunities to start with hyperbaric oxygen therapy were very good. She had no epilepsy anymore and because she was young. We could call Karin on Thursday February, 3 and you guessed right. Nina could start with the hyperbaric oxygen therapy.

On July, 4 we starts with the hyperbaric oxygen therapy. She starts with 40 treatments. That means every day of the week to Zwijndrecht except Saturday and Sunday. When she make progress there will be an another 40 treatments. It's not only hyperbaric oxygen therapy. You also has to work very hard with a training program. I'll try to tell you what hyperbaric oxygen therapy is. With hyperbaric oxygen therapy you go in a cabin. Those cabins they use for divers when they have decompression sickness. In that cabin they put on the pressure equal to 4 meter under water. When the pressure is ok the children got a plastic cap on. Through these cap the children gets 100% oxygen. Through the pressure the oxygen comes in places of the brain where it normally can't come. We use 10% of our brains and the rest is not in use. These cells are sleeping and have no function. These cells can be activate by the oxygen. Especially the cells around the injury are important. These cells has to become a function and that is what you reach with therapy. In Florida they have several therapies, but the most important is physiotherapy. Nina gets beside the oxygen therapy senso-motor therapy. The exercises she gets, we can practice at home. Every 2 months there will be an evaluation and there were necessary clear of.

Diary.

I'll start on July,4 2005.

I'll write the whole first week. After that I pick out the most important dates.

4 Juli 2005.

WE STARTED!!! This afternoon at 12.00 hour, Nina has been in the cabin. She cried a lot, but they told me that all children cries when they just start. When she came out, she quick stops crying. (1) The numbers you see between the parenthesis are the treatments she has got.

July 5, 2005.

Today it was much better. I give her bread before she goes in the cabin. But then she realize that she has to go in the cabin again and starts to cry a little bit. But I could derive her with a book. In the cabin she cries when they bring the cabin to the right pressure and when she gets her cap on. When that was done, she relax and reads books with Mariël. When she came out of the cabin she was all over relax. When we come home Nina has to practice the senso-motor therapy and she really likes it. She has a lot of fun. (2)

July 6, 2005.

Today Nina cries for 5 minutes in the cabin and after that she was relaxed and read her books with Mariél . She doesn't get much sleep in the afternoon, but In the evening she sleeps in a couple of minutes.(3)

July 7, 2005.

Today Nina cries a little bit and after that she was relax. She had a lot of fun with Henk (boss of the hyperbaric center). What I saw with the practice. Nina sit more with her butt on her feet and not with her legs next to her butt. Here we call that TV-sit. (4)

July 8, 2005.

My neighbor Hanneke has come with me and Nina to Zwijndrecht and Hanneke has been in the cabin with Nina. She had no ear problems and Nina cries a little bit. Today Nina demolish her book and I have to buy a new one.(5)

July 11, 2005.
Nina was very good today. No more crying. She works well on her practice. I want to tell you something about last weekend. Nina sat in her highchair and on one moment she put her right arm up above her head. Normally she comes not higher than her shoulder. Yesterday she repeats it, but now with both arms. Her left arm wasn't reach the high of her right arm. Would this be a start?(6)

July 18, 2005.

Last weekend we saw a difference at Nina. She begin to look alerter. When she lays on her back, she can clap her hands above her head. Her fingers are still wide open and her hands make no noises, but it's a start. Also she knows what I mean. When I ask her to clap her hands, she claps her hands. We also sense that she can hold up her head for a longer time. It seems to be that a couple of days rest put this kind of things forward. Today Mariël gets out of the cabin. She has a cold and in the cabin her ears were hurt. So she has to come out. Sonja (personnel) took her over and what I saw is that Nina didn't cry. Normally none of the children or me can go out of her sight without she starts to cry. But now she didn't do that. Nina works on her practice very good, except 2 exercises. But on July, 25 an physiotherapist is coming to help me with the practice and then we'll see how we going to do this.

July 29, 2005.
This morning when Nina wakes up, Theo heard that Nina makes a variety of noises. She's really tries to make difference noises. In the cabin was it all right. This afternoon with her practice, Nina point out, for the first time, pictures in her book. Her movements are uncontrolled, but the start is there. To stop with practice is for Nina a menace. But if we play for a while, it's all right. (20)

August 2, 2005.
Nina amused herself in the cabin today. After the session we had to visit Ilse. Ilse is physiotherapist and she give the exercises for the practice. She also learns us how to do the exercises. Some of the exercises we don't have to do anymore and we get new one instead of the old one. This exercises are turn down on Nina and we are going to work them out. (22)

15 August 2005.

Nina said a few times "yes" last weekend. It was not a response on a question from us, but just practice by her own. Also this morning she said something, but we couldn't recognize what she said. I think it will be all tries to talk. We'll have to wait and be patient. Léonie departs Veldhoven early this morning, so that she can also go in the cabin with Mariël and Nina, but they have to take her out of the cabin. Ear problems. Mariël and Trudy (personnel) played memories in the cabin and Nina likes it. The practice went very well and the exercise to stand in crawl position goes better and better. This evening Nina pull up to stand for the very first time in the playpen. We are very proud of her (31)

August 29, 2010
Nina is doing very well. I told you, she can stand by herself, but since a couple of days she can walk 2 steps.
We also finally found someone who helps her to fall asleep. When Nina can't sleep we put a Cd from Kenny Rogers in CD player and in no time she sleeps. I send the fan club a email and Kenny wrote back:

DEAR NINA
THANK YOU SO MUCH FOR CARING ABOUT MY MUSIC...THAT MEANS A LOT TO ME. I HOPE SOMEDAY I CAN COME TO THE NETHERLANDS AND MEET YOU AND YOUR FAMILY.. YOU ARE A VERY SPECIAL GIRL WITH A WONDERFUL HEART.
YOUR FRIEND
KENNY ROGERS

January 6, 2012.

Since last summer we found out Nina can read.

I have a magical drawing board and every time I write one word in every corner. Than I say one of the 4 words and she has to point at the right word.

But since a couple of days I write for example elephant and I ask her to point at the animal which have a proboscis. Or the animal with the long neck and so on.

She has them all right. I do this also with names of family. Who is your brother and she points at Stefano.