Annemijn Doornbos

Annemijn’s Story

Born September 30th, 2009

Our daughter Annemijn was born on Wednesday September 30th 2009. All was well, although compared to her bigger brother she slept more often and cried only every now and then. We never met any parent complaining that their child slept so good and cried so little. If we only knew better…
When Annemijn was 12-13 days, our concerns grew bigger. She didn’t report for drinking, and we were unable to wake her up when it was time to feed… According to Dutch standards, a nurse came to visit us and the newborn on day 13. We told her about the drinking problems, and she was concerned too. Our daughter didn’t look as pink as a baby should be, and her breathing frequency was quite high. To be sure, it was best to visit the local doctor, who thought it was best to check her at the local hospital. There, they suspected a heart problem, since an X-ray of the thorax displayed an enlarged heart, and ECG showed abnormalties. This required further research at the academic hospital in Nijmegen. During the echo, the child-cardiologist recognized the symptoms like increased size of the right half of the heart, and increased pressure in the long arteries, she diagnosed vein of galen malformation…

The earth underneath our feet was swept away… I Will never forget those big eyes of our daughter that were looking through the incubator at us while we realised that we could lose our little girl. However, our girl was sick, and she needed her parents, so we pulled our self together.
As we were told that surgery would not be performed if brain damage had already occurred, the results of THE MRI scan was the first obstacle to take. It seemed an eternity, but within 36 hours after the diagnose, the first good news arrived… No brain damage, so plans could be made! After a lot of behind-the-scène discussions between various doctors in different countries, it was decided to wait until Annemijn would weigh 7-8 kg. However, if necessary, intervention would be done earlier. As we prepared our self for a 5 month stretch in hospital, after 2 weeks Annemijns condition suddenly got worse. Her heart could handle the malformation, so she was immediately transferred to Amsterdam, where surgery would take place. Upon arrival in Amsterdam, we were told how bad Annemijns condition was, and we should be aware that she might not survive the surgery. Because of the numerous feeders and the worsening condition of Annemijn, it was decided that not the artery feeders, but the venous pouch where all the feeders congregate was going to be coiled. There was no other option…

After a 4 hour surgery, Annemijn came back at the IC, with a heart frequency already 15-20 beats lower than the weeks before. Regular monitoring of her heart by ultrasound learned that her heart was recovering quickly, and within 36 hours after the intervention she could breathe without the support of a mechanical respirator! However, because almost the complete malformation had to be closed in a single session, blood pressure was rising to extremely high values. Moreover, MRI scan indicated that her ventricle were swolen, without signs of increased pressure, suggesting that her brain tissue was deteriorating. Nonetheless, for the next week, the situation looked stable. Until disaster struck again. Out of the blue, an epileptic attack occurred, and MRI scan indicated further swollen ventricles and increased pressure on her brainstem. While her breathing frequency became irregular, we baptised Annemijn at the IC unit, and were confident we would lose her that night. However, breathing became more normal again, and around 04.00 o’ clock in the morning the nurses advised us to get some sleep.

Although it was clear that from that moment Annemijn would suffer permanent brain injury, slowly but surely things were starting to get a little better. She could take a bath, she starter to drink some milk from a bottle, and she learned to deal with external noises and visual stimuli when we took her out of her bed a minute longer every day. And so, after 2 months of hospital, we were allowed to take Annemijn home on November 24th.

Because her ventricles were still expanding, a second embolization was performed the week before Christmas to close a remaining two feeders. While Annemijn woke up from narcosis, we immediately noticed that she was much more aware of her surroundings. Her eyes followed us around her bed, and we could take her home after three days already. Since then, things went quickly. Although she (and we) had to deal with reflux, she gained weighed nicely, and we recognised progress in her development on at least a weekly basis. She started to grab, her increased muscle tension slowly reduced, and her smiles grew bigger and bigger….

At present (August 2010), we are preparing for her first birthday party. The last six month, we have been out for a small holiday twice, and Annemijns bigger brother is very fond of her. For us, we are thankful every morning when we walk into her room, and see our daughter smiles at us. We are aware that we are so lucky.
When we heard our daughter had Vein of Galen malformation, we searched the internet for information. Thanks to sites like this, people can quickly get access to reliable information. We noticed however, that because this malformation is so rare, it is difficult to contact other parents and share experiences. We invite everybody to contact us if desired.
Rogierdoornbos(at)gmail.com

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About vogadmin

Vein of Galen UK is a website dedicated to families and sufferers of Vein of Galen malformation all over the world. We provide information and support for families affected by this condition.
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