On the 29th May 2000, I went in for a scan at 38 weeks with a normal pregnancy. I was being scanned as my previous child was too large for my pelvis and ended up as an emergency c-section as he got stuck and went into distress. The scan appeared to go well and the radiologist had not indicated any problems. Later that night I was rung up by a specialist at the hospital and was told that they had discovered a problem with my baby’s brain. I went straight into panic mode whilst being told instructions. I was told that we would need to leave the next morning and that we already had appointments to see doctors in Wellington for further scans to determine what they had actually discovered.

On the 30th of May we met with Doctor Jeremy Tuohy who did several scans. He gave the diagnoses of vein of Galen but he could not be 100% certain until she was born and then they would need to do further testing to confirm the diagnosis. We were told babies born with vein of Galen only have a 10-20% chance of survival.

Jessica was born on the 31 of May 2000 at 12.45pm by c-section, she weighed 3380 grams. On arrival she had a degree of respiratory distress and signs of high-output cardiac failure. A referral was made to the Royal Childrens Hospital in Melbourne. Jessica remained essentially stable with the help of low flow oxygen and diuretics.

It was decided that the Air Ambulance in Australia would come and get Jessica with their doctors and a nurse on board. On the night of the 1st of June Jessica was to be put on a ventilator so she could be stable enough for transfer. When they tried to ventilate her she fought it. In the end they had to sedate her so she would let the ventilator do the work for her and to take the stress off her heart and make her stable enough for transfer. They told me “she is a real little fighter”. The doctors from Australia came on the 2 June earlier and saw Jessica. They gave her a 60-40% chance because she was a good birth weight and was fighting strong. They did handover with Wellington doctor Micheal Hewson and left for Melbourne. Because I had a c-section I was not allowed on the plane with Jessica, it was too small. Later that day I went on a domestic flight to Melbourne to be with her.

By the time I got to Melbourne to be with Jessica they had already completed a MRI and the first embolisation. The MRI showed multiple arterial and venous connections to the aneurysm. The MRI was followed by the first transfemoral (venous) coil embolisation of the aneurysm, which they had inserted 32 coils into and had taken around 4 ½ hours. Jessica was in bed when I got there and the doctors were pleased with the first surgery. I met with Dr Peter Loughnan, neonatal consultant who did all of the organising of her operations and had all the information on previous vein of Galen cases that they had treated. I was told they had done only eight before Jessica. On the 6 June I met with Dr Peter Mitchell, Jessica’s surgeon from the Royal Melbourne Hospital which she was transferred to for each surgery. He preformed the second surgery by angiogram/adhesive embolisation of arterial feeding vessels which took 4 hours. Jessica tolerated the embolisation well and as there was a significant improvement in her breathing she was able to be extubated on the 9th of June. Jessica continued to do well and a further angiogram/arterial embolisation was preformed in order to seal residual significant feeding vessels with a further six coils inserted. This took 3 ½ hours. In the immediate post-operative period, there were several episodes of seizures and blood pressure changes due to the surgery. She was given medication to control the seizures and has not had any more to this day.

When Jessica came back to New Zealand as a one month old baby, it was discovered that she was very tired, floppy and not alert. Doctors in Wellington ran some tests to find out why this was and it was discovered that Jessica’s thyroid was not working properly and she was put on thyroxin, which she was eventually weaned off. The doctors discovered that due to the large amounts of dye used on her for the angiograms it has high amounts of iodine in the dye and had temporally suppressed her thyroid.

Jessica also suffered from gastro oesophageal reflux which made it very difficult for her to gain weight. She was put on medication and milk thickener to help her with weight gain.

Jessica went back to Melbourne at one year old and had another angiogram. The doctors had intended to do further embolisations but because of the last flowing veins being at the back of her head and being hard to get to and the fact that the vein was not affecting her at that time and the risk brain damage they decided not to embolise.

Jessica is doing well she has had several MRIs over the years to keep an eye on the flow going through the aneurysm. She is under our local pediatrician Dr DE Sylva and the MRIs are done in Wellington. The results from the MRIs are sent to Melbourne for the surgeon to read and advise on treatment if any. There have been developmental delays along the way but with a lot of work from therapists and myself Jessica has managed to meet the developmental milestones appropriate for her age. Jessica is now eight years old and loves sport, ballet and the school choir. Jessica is an absolute delight and everyday I thank God, the doctors, the nurses and everyone involved with her that I still have her.