David’s Story
Born October 31st, 2010
I was pregnant for the first time and had my third ultra-sound scan on August 27, 2010 (29th week), when my gynaecologist told me that there would be an “abnormality in my child’s brain”. I was totally devastated and very afraid. He presumed that my son had an arachnoidal cyst and so we were sent to the antenatal unit at the University Clinic in Frankfurt to have a more specific ultra-sound scan.
The doctor who did the first test could not find out what my baby had. So she called her boss who was also not able to figure out what was wrong with my baby. Then the Department Head came and said that my little one suffered from Vein of Galen Malformation. I had never heard of this before and he explained that it was a very rare disease; only one out of 25,000 women gave birth to a baby with this problem. He told me that our boy would have a survival chance of 60 percent until his birth. He could die due to heart failure or a bleeding aneurysm. If he would survive until his birth, he would die later on without medical intervention. It was the worst day of my life. The doctor informed us that it would be possible to medicate the malformation after the birth. Years ago they had sent a family to
specialists in Paris, where the mother had a C-section and the aneurysm was later clipped.
The child had survived but still suffers from seizures, which is a “good” progress regarding the diagnosis Vein of Galen Malformation. Our only thought was that our baby could also survive if he made it to the birth.
Every week we went to the University clinic to monitor his heart condition and the size of the aneurysm. Fortunately, our boy was so tough that both his heart and the aneurysm remained stable. Three weeks after the horrible diagnosis, the Frankfurt doctor found a German specialist who was able to help us. They sent us to the neuro-radiologist Dr. Friedhelm Brassel based at the Sana Clinic Duisburg, who is one of the leading specialists in treating Vein of Galen Malformation. He told us that he had almost 30 years of experience in treating this kind of malformation and uses the embolisation method rather than the clipping one. More specifically, the combination of a trans-venous and trans-arterial method using a “kissing microcatheter technique”.
There was a chance that our boy could be treated successfully after birth. The ideal time for the intervention was three months after birth. If any difficult conditions arose between the birth and the planned date, they would have to do the intervention earlier which would increase the risks. So we stayed optimistic.
The plan was that I would have a C-section two weeks before the expected due date (November 12th) in order to have the best conditions in case an immediate intervention were necessary. The Frankfurt team worked closely with the Duisburg team in order to offer us the best support. Luckily, over the weeks that followed, my boy’s condition remained stable. A few days before we were to go to Duisburg, I left some amniotic fluid, which meant that I had to go to Duisburg immediately. However, I had to continue to wait in Duisburg since my waters hadn’t really ‘broken’. Two days prior to the planned C-section, I started having contractions and the C-section had to be done earlier.
Fortunately everything went well. Little David was born at 4.31 pm on October 31, 2010. He was taken directly to the intensive care unit for new born babies so that they could check his functions and see if he would manage the new circulatory situation due to the malformation and his heart. He was stable and I was allowed to see my little boy for a few hours after the birth. David had to stay in an incubator for some days in order to be monitored. He did really well and no intervention was necessary which meant that we were permitted to go home after two weeks. Dr. Brassel said that the best date for intervention would be three months after birth, so the date was set for January 31st, 2011. To support his heart, we had to give him Lanitop® and Aldatone®. He also had to be monitored weekly by a paediatric cardiologist.
Back home we had a wonderful time, in spite of the angst we had concerning the necessary intervention. Our paediatrician was also a cardiologist and monitored David with weekly ultra-sound scans. Furthermore we had a check-up in Duisburg just before Christmas and everything seemed well, too. The aneurysm and the heart were still stable. We waited for the 31st January.
Everything went well – until mid January, when David began vomiting often and his eyes rolled down. At first we thought that it was normal for babies to frequently vomit and look strange. David was our first child and our family and friends also confirmed that he would be OK. As we went to our paediatrician on January 13th to have another ultra-sound – he had been on holiday from Christmas until that day – he immediately called the Duisburg team in
order to bring the intervention date forward. The aneurysm had grown rapidly and due to the high pressure, David had developed a hydrocephalus as well as the sundown phenomenon.
We were mortified and blamed ourselves for the delay in our reaction. David had his first embolisation on January 20th, which took more than nine hours. Dr. Brassel and his team closed three of four feeding vessels of the malformation using platinum coils. It was very risky but all went well without any complications.
Afterwards Dr. Brassel intended to close the malformation completely in order to minimize the pressure of the aneurysm which led to the hydrocephalus. Since David had several infections and we had to wait in hospital, the second embolisation took place on February 7th. Dr. Brassel was also able to close the last feeding vessel – again without any complications. We were so happy. It was unbelievable. He had saved our son’s life.
David quickly recovered and we went home five days later. A follow up check-up was planned several months later by means of an MRI and angiogram. The date was set for the beginning of May, but David had been improving so well that it was put off until September 14th. We went back to Duisburg and Dr. Brassel told us that David was cured. The MRI and the angiogram both revealed that the aneurysm had already been absorbed and there was no feeding vessel left.
David has been improving in leaps and bounds. During the first three months following the embolisations, he had just a few motoric delays, but for several months now he has been getting better much faster than normal and is a very active and happy child – he makes us unbelievable happy. We are so grateful for the wonderful support from Dr. Brassel and his team who did a terrific job. It is still unbelievable that such a highly skilled therapy is
possible. We thank Dr. Brassel and his team for saving the life of our son David. We thank all the people involved, the doctors, specialists and nurses, who supported us in both the worst and happiest time of our lives. Our little boy David is just a wonder.
We hope that our story may help families that are in a similar situation. It is so important to act appropriately and immediately in order to find the right people who can help.
Other useful related Information:
Website of Sana Clinic Duisburg:
Contact:
Mrs Friebe, secretary of Prof. Dr. Brassel:
Tel. 0049 / (0) 203 733 – 2701
E-Mail: friedhelm.brassel@sana.de
Further Information concerning the treatment of Vein of Galen Malformation (only in German):
Vein of Galen Support 