Our little boy Mason was born on 12/6/07 at John Hunter Hospital, Newcastle, Australia.

When I was 34 weeks pregnant I went to my routine doctors appointment and Russell and I found out that our unborn son had vein of Galen malformation. Our local doctor told us he probably wouldn’t survive when he was born. We were devastated and in shock because everything had been going so well throughout my pregnancy. It was the worst day of our lives. We just could not believe what we were hearing and didn’t understand why this was happening to us.

We were referred to go and speak to doctors at the John Hunter Hospital in Newcastle to find out more about our baby’s condition because we had never heard of this before. The doctors in Newcastle told us our baby had a chance and that it was treatable. They were concerned that our baby might go into heart failure but they said they would just have to wait and see what would happen when he was born.

We tried to find out as much information as we could about this rare condition. We started to go to church and just prayed that our little boy would fight this condition.

Three weeks later the doctors decided to book me in for a c-section because our baby’s head was getting too big.

On Tuesday at 1.30pm 12th of June 2007 our little Mason was born, he came out screaming and they took him straight up to the NICU to watch him for the next 72 hours.

Mason did really well. He only had to stay in NICU for 9 days and then we were allowed to take him home! He was on some medication and had to have weekly checkups with our doctor.

When he was 7 weeks old they decided to do his first embolisation because he was having trouble putting on weight. We travelled down to The Children’s Hospital at Westmead in Sydney and David Lord (paediatric interventional radiologist) was to do Masons embolisation the next morning. At 9.00am the next morning Mason went into the operating theatre and he was in there for 6 hours. David Lord told us that everything went really well and we were so relieved.

Over the next couple of days Mason started to go downhill. His head was so swollen, so they took him in for a MRI to see what was going on. They found out that the malformation had changed shape and David Lord said he has never seen this happen before. I started to get really worried. They took Mason straight back into the operating theatre and did another embolisation to glue off some more blood vessels. He was in there for 7 hours and it all went well. Mason had to stay in hospital for two weeks and then we went home.

Mason has been doing really well and he has just started smiling, he is just so cute. We have to go back down in about three weeks to get one more embolisation done. His doctor is happy with the outcome and said Mason should be a normal little boy. I thank god everyday for my little Mason and for David Lord for everything he has done for Mason, thank you so much.

At five months old Mason is doing extremely well he weighs 6.5kg and just got taken off his medications. His weight, length and head circumference are all in the normal range for his age, which I’m just so happy about. He is just doing so well it’s amazing.

Mason has had three embolisations and doesn’t have to have another one now till he is one, hopefully that will be his last one. He has just started eating custards he is also reaching all his milestones, which is great, and he now likes being on his tummy (he use to hate it at first but I just kept doing it every day till he got use to it because he needed to strength his neck muscles up). He is currently going to physio because his neck is still very wobbly and I have to do exercises with him every day.

Mason is now seven months old and is doing really well. He is the happiest baby and he acts like a normal seven month old. He now plays on his tummy a lot and his neck is so much stronger. He now gets in his jolly jumper and jumps around. This has been really good for his legs, as they have become a lot stronger. He rolls all over the place and he now sits up in his high chair to eat, he has just become so much stronger over the last couple of months and I’m so happy at how much he has achieved. He is definitely my little miracle.

12 Months

Mason is now 12 months old and has come such a long way, what a huge achievement. What a terrible year my little man has had but he pulled through and is doing great! To celebrate we had a HUGE birthday party.

Mason celebrated his first birthday at our home in NSW Australia. We had over 50 guests attend our very special day. We hired a magician for the day who provided magical entertainment, juggling, balloon sculptures and who even had performing animals. He was awesome and the kids had such a great time that it was certainly money well spent.

Mason is still not walking at the moment. He is just walking along all of the furniture but he is not too sure about taking that first step. I’m sure it won’t be long. Our paediatrician said he is doing wonderful and he will walk when he is ready, his head circumference has stayed the same since he was 5 months old which is reassuring.

17 Months

Mason has just started walking, he is very happy and is doing great. We have had a visit back to Westmead Children’s Hospital in Sydney after a 12 month break. Mason had an audiogram and the results were unbelievable. There was no sign of the vein of Galen malformation and Mason does not require anymore embolisations. What a HUGE relief! I was just over the moon! I was crying I was that happy! I went down there expecting the worst because there is always that little bit of doubt in the back of my mind so it was great to get these results. We do not need to see our Paediatric Interventional Radiologist until Mason is 5 years old but in the mean time we will have 6 monthly checkups with our local paediatrician. Within the next few months we have to travel to Sydney to have an appointment with the Brain Surgeon just to check to see how Mason’s development and milestones are going which I am not worried about at all.

We also just threw all Mason’s bottles out and he is now on Sippy cups. We have to work on getting rid of the dummies next, which I am totally not looking forward too. He just loves his dummy, so it is going to be a challenge to take it off him!

20 Months

Well where do I start. Mason is a very active, happy, healthy little boy. He is into everything he loves playing with his big brothers Aiden aged 10 and Chance aged 8. He loves being outdoors and  he would stay out there all day if you would let him. He loves playing in his sandpit and riding his bike. He has just started drawing and the other night he decided to draw on the kitchen floor and he was very pleased with his efforts. He is not quiet at the play dough stage yet, he still tries to eat it.

Mason does swimming lessons every Saturday morning. He enjoys swimming and he is very funny as he swims like a little frog. However for some reason he does not enjoy swimming lessons all that much and he does not like his swimming teacher, I think it might have something to do with her putting him under the water, he doesn’t enjoy that very much at all.

Mason’s milestones are very normal for his age; he can now say up to 15 words. He has just started stacking blocks on top of each other and saying “Two, three yeh.” He hasn’t learned how to say one yet!

I also do a lot of reading with him. Every night before bed he walks to his book shelf and picks out a book for me to read to him. It is usually Hairy Maclary and Zachary Quack by Lynley Dodd (Bridgette and Fynn brought this for him for his first birthday), it seems to be his favourite book. I have since bought some more Lynley Dodd books which he really seems to enjoy.  He also enjoys Pamela Allen books as well.

That is probably all I can think of at the moment, my advice would be to do lots of reading with your child and a lot of games because your child sure does benefit from it all.

If you have any questions feel free to email me at ameew11223@hotmail.com.

Amee Watson (Mason’s Mum)