Date of birth: 2000
Family: Myrthe has three brothers
Myocarditis caused by viral infection and brain hypoxia after cardiac arrest
How it happened (told by the parents of Myrthe, both teachers)
When Myrthe was eleven months old she became infected with an unknown virus. As it was hard for Myrthe to breathe the doctors first thought she had asthma. Then, her heart stopped beating for approximately ten minutes and the oxygen supply to her brain was cut off. They transferred her from one hospital to another and eventually she was taken to the German Heart Institute in Berlin. They confirmed the diagnosis: cardiac arrest followed by brain hypoxia. The doctors tried to support her brain and her heart but cardiac arrest and oxygen deprivation had already caused severe brain damage.
Myrthe was in a poor condition. She could not sit any more, crawl or hoist herself up to stand. She could not see, she stopped babbling, became apathetic and on top of everything else Myrthe developed epilepsy. We took her to a rehabilitation centre but soon had to accept that they just could not help her. While we were looking for further treatment options we all travelled to England. We had heard about a treatment for neurosensory disorders and decided to try it. The therapy regime involved numerous exercises, which follow a strict programme and had to be done with the patient on a daily basis. After six months the patient is re-examined and the plan adjusted. We followed the programme for two and a half years but noticed little improvement although it helped to keep the epilepsy under control.
We constantly checked the Internet and the press for further treatment options. We were particularly interested in stem cell therapy and hyperbaric oxygen therapy and discussed both therapies with the doctors. We were told stem cell therapy very promising but not for at least ten years.
In the US we found a centre offering hyperbaric oxygen therapy. The therapy was designed to last for ten months. Unfortunately, we could not afford the treatment and our health insurance company had refused to meet the costs. We clung so much to the hope that hyperbaric oxygen therapy could help Myrthe. Therefore, we set up a foundation and started to search for donors. Thanks to the generosity of one man we soon had enough money to start therapy in the US in March 2005. The whole family stayed in the US for five months. As we are both teachers we were able to teach our sons ourselves. Our schools back at home were very supportive. They knew all about the troubles with Myrthe and agreed to reduce our working hours so we could work part-time.
Of course, there was so much to be organised but everybody helped to make our stay in the US possible.
We finally returned home after ten months. We, including our parents, brothers and sisters, had hoped that, after finishing hyperbaric oxygen therapy, Myrthe would be able to sit, walk or at least crawl. But she could not. However, her spasms were fewer and only in the mornings were Myrthe’s muscles all stiff. Her eyesight got better and she started to utter sounds, which, to her, seemed to be words. Also, her ability to sense the world around her improved. Although, this was only noticeable to us, it still signified an improvement. Hyperbaric oxygen therapy then became available over here in The Netherlands and so we are able to continue Myrthe’s therapy from home.
What else could be done? We checked on how far stem cell therapy had developed but immediately agreed that embryonic stem cells were not an option. One day, we read an article in the newspaper about the positive results of a patient who had been treated with his own stem cells. That was the kind of treatment we had been looking for! After we had discovered that Cells4health was the provider of the therapy we immediately made an appointment to be considered for treatment. We did not say a word to our parents or to our brothers and sisters.
First stem cell treatment in June 2006
Myrthe’s muscle spasms made bone marrow extraction difficult but, fortunately, not impossible. Due to her crooked back the doctors again faced difficulties re-injecting the stem cells: Lumbar injection was not possible so the cells were administered intravenously.
We visited our families only two weeks after the stem cell re-injection. They were absolutely amazed when they saw Myrthe and asked us what we had done with her. We lifted Myrthe to her feet and, as the muscles had relaxed and the paralysis had decreased, she straightened her legs and put her feet flat to the ground. We had another small triumph to show to our family. Before when we sat Myrthe into her chair her body tended to tilt sideways as she tried to keep it in balance. This time she sat all by herself, without any help. Of course, the moments of triumph were short and infrequent, but still they existed! And Myrthe continued to triumph: She started to follow the conversations around her and even participated. She understood what we were saying and acted accordingly. Although she did not speak whole sentences, she started using sounds and short words and she even expressed her feelings. She also seemed to be able to see. When showing her an item she could name it if she had a sound or a word for it. When her brothers stood close to her, she recognized them and also knew who is who. She even called them by name, which is something all three of them appreciated a lot. They did not mind us spending so much time with Myrthe surprisingly; they coped with it quite well and even benefited from it. They had the chance to spend some time in England and in the US. They continue to be a real delight and bring so much joy and pleasure to us. They are happy and amusing boys and do not cause any trouble at all. They are even doing very well at school.
Second stem cell treatment in November 2006
Bone marrow extraction was a lot easier this time. They were able to isolate twice the amount of stem cells than they needed. Some of the cells were frozen and stored for further treatment.
Myrthe keeps getting better and better. Now she can properly balance her body. If she leans too far over, she hoists herself into an upright position. Her muscles are more relaxed and training is not as hard any more. Myrthe also seems to enjoy training with the exercise equipment we have set up for her. Of course, we still hope that time will bring further progress. It is particularly the improvement in balance that keeps us optimistic. After all, keeping your balance is the prerequisite for standing and walking. Maybe one day Myrthe will learn how to walk.
You should try any therapy, which is ethically and medically acceptable.*