Born October 10th, 2010
Our names are Natalie and David we have four children Ryan, Chloe, T.J. and Kyle. We live in Seaham Co.Durham. When I was 33 weeks pregnant with our fourth child, during a normal growth scan they were measuring the baby’s head and we both noticed there was a large, white, round patch in the middle of our baby’s brain. I asked what it was but the nurse couldn’t explain it herself. I was sent to Newcastle rvi where they diagnosed a Vein of Galen malformation.
I’ll never forget that day all the doctors came into the side room to tell me my baby was either going to die or be brain-damaged. I was then sent to see a specialist professor – Joe Battacharya – at the Southern General Hospital in Glasgow, there it was like deja-vu they told me the same. They did MRI scans on me and my unborn son which confirmed that there was no brain damage. At last there was a glimmer of hope. They then told me that he was coping in my tummy and that it was safer to leave him where he was until he was a bit bigger. If they delivered him now he would be too little to survive the operation.
A few days later I had another ultra sound scan to check on my son. His heart was racing and it was enlarged, his liver was failing and his lungs were filling up with fluid. They decided there was no choice but to deliver him now. I phoned my partner who was four hours away with our other children he came straight up and saw our son being born by emergency c-section at 34 weeks weighing 5lb 15oz. They took him away to stabilise him on a life-support machine. I got a quick stroke of my son before they took him to Yorkhill hospital for sick children.
My son was 2 days old when I was able to get a taxi over to the childrens hospital after my c-section and that was the day of his first embolisation. Hours later my baby Kyle made it through the first and most dangerous embolisation. He was covered in wires and on the life-support machine. He was doing well and defying the odds, the doctors were amazed at how well he pulled through. We finally took him home at 3 weeks old. They wanted him to come back when he was bigger at 6 months old for the next embolisation. At 3 months he started showing signs of heart failure and we took him up to Glasgow for his other embolisation as he was bigger and stronger. They performed three separate embolisations, using the gluing method over the 5 weeks he was there. It was hard and emotional but it had to be done to save my baby’s life. We were sent home and sent an appointment for him to have a MRI scan at 6 months.
Leading up to the appointment my son was doing brilliantly he was doing everything the heath visitor wanted him to be doing, he’d had no seizures whatsoever, but again he was showing signs of heart-failure again it was the same as before: He was breathing fast, struggling with his bottles, his heart and liver were enlarged again. So they decided to go ahead at 6 months with his fifth embolisation and aim to seal the Vein of Galen off completely.
The day of his operation they said they would be going in through the main artery the same as before and it wasn’t necessary to go in the new way by the jugular as this was a last minute resort. After going through all the risks, I signed the consent papers and I took Kyle down to the cath lab where they do the embolisation and gave my son a kiss goodbye while they put him to sleep. No matter how many times you do this it gets harder and harder every time. My son was in the cath lab for over four hours and my phone rang, it was Yorkhill saying that Dr Joe wanted to talk to me. He came on the phone and explained that there were complications and they were going to go in by the jugular vein and use coiling. So they paused the operation for half an hour while someone got a taxi over with the coils from another hospital.
Four hours late, I received another phone call telling me my sons operation was over and he was back to intensive care. This was normal for him after an operation as they need to keep him still and balance his pain killers and blood pressure. This time though they put some wires on his head to monitor him in case he had a fit because they had sealed the Vein of Galen off and his brain and heart had to adjust as they were used to pumping so much blood through.
Kyle had a MRI scan done the next day which confirmed they had sealed the Vein of Galen off. Kyle recovered well and he has to have another MRI in December this year to make sure all is well and then an angiogram in July 2012. We have just celebrated Kyles first birthday and what a special day that was for all of us. He is such a bright cheeky boy, we love him so much and I thank all of his Doctors and guardian angels who watched over my special little boy.
Please feel free to contact us on 07542187972 for a chat. This site really helped me when I found out about Kyles condition. I am new to the internet but it’s nice to get my sons story on this site if it means it will help others understand.
x Natalie x