Mia Stewart

Mia’s Story

Born September 21st, 2002

Mia was born on the 21st September 2002, Normal delivery and very quick! She weighed 7lb 3oz Everything was fine for the first 5 weeks and then she began to get very lethargic and not eating, I took Mia to get weighed on the Wednesday and she had lost a lot of weight, I took Mia to the doctor on the Thursday and he said that there was not a thing wrong with her. And just to wake her every three hours and feed her, and as I didn’t know what was wrong I just agreed with the doctor, On the Sunday Mia had started to get very cold and just sleep constantly as if she was unconscious, I phoned Emdoc the emergency doctor and took her down there straight away. They diagnosed Mia with a bad chest Infection and so we had to take her to the local paediatric hospital, and they got Mia hooked up to all the oxygen monitoring equipment and her levels were so low they had to sedate her. They were deciding what to do and decided that she needed to go to an intensive care unit, which was at Guys Hospital London.

Mia went in an ambulance and I had to go in the car, as they were really high winds and that day and it would have made the ambulance to unstable. Mia got to Guys but we were there well before her. When they got there they had to get Mia up on all the machines, as she needed help to breathe. Paul and me were allowed to go in and see her, it was so upsetting. Mia went up to the intensive care unit and had also been sedated on Morphine. They were giving Mia all antibiotics for her chest infection to clear it up, but they realised it was something else other than just a chest infection and a doctor came up and did an ultrasound on Mia’s head and there was a loud noise coming from inside her head, They sent Mia down for an MRI scan to see if they could find what the noise was. They saw something on her vein but as it’s a rare disease, they were not quite sure what it was, they did investigation and finally what they had found was a Vein of Galen Aneurysm

A couple of days later Mia was still in intensive care and they didn’t think it was possible for anyone to actually do anything for her. One of the nurses suggested that I got Mia christened while she was so critical just in case she didn’t make it. The next day Mia had started to breathe for herself only a few breathes but it was a start, and things got better everyday, she was out of intensive care two days later. They had found a specialist that deals with the Vein of Galen up in Oxford, Once Mia was all completely better Mia got sent up to Oxford in an ambulance, I went with her.

We arrived in Oxford and they had Mia hooked up to all the machines again to monitor her oxygen and heart beat. Dr Molyneux came and saw Mia the next day, and decided it would be better if he sent Mia home so that she could grow a bit more as she was so small and the Vein of Galen embolization would have been to risky. We got sent home a day later, Mia was on all medicine so that her heart didn’t go into heart failure again, she is on Dipyridamole, Spironolactone and Frusemide.

Dr Molyneux had set a date for when Mia’s operation was going to take place 7th April 2003.
Mia was very healthy and was reaching all her milestones and was an incredible little baby and didn’t seem to be affected by her Vein of Galen. Mia was on special milk called Infatrini to help her gain weight, and it certainly did the job.

On the 6th April 2003 Paul Mia and me set off too Oxford to the Radcliffe Infirmary. We arrived at the hospital and Mia was still well and the doctors were very pleased with the way Mia was coming along. Dr Molyneux had everything set up for the operation to go ahead the next day and to do the embolization. Mia was allowed to stay with Paul and me on the first night as we had accommodation in the hospital and was nice she could stay with us, we had to be on the ward at 8am the next morning and was going to go down for her operation at 1:30. It got to 1:30 and there was no word until the ward nurse came and told us that Mia wouldn’t be going down now until 3:00.

3pm came and there was a phone call to say we could go down, I carried Mia down to the theatre and waited with her until she had been put to sleep, they told us it would be best for Paul and me to go out for a while as Mia was expected to be in the operating theatre for 6-8 hours. We went out and were very concerned when we got a phone call about an hour and a half later to say that Mia had come out of surgery, all bad things had gone through my head. Paul and me ran back to the hospital and there was Mia lying in the bed giggling and kicking her legs about and blowing raspberries as she does. Confusing went through my head.

About an hour later Dr Molyneux came in and told us the exciting news, He had got inside Mia’s brain and noticed that 90% of Mia’s Vein of Galen had shrunk and only 10% was left, and as it had mainly gone there was no point in doing the operation on such a small part of aneurysm, Mia has to go for an MRI scan in 3-4 months to see if everything else has cleared up. Mia also had two holes in her heart one of them had gone and the other one is on its way to going, So I have a little miracle baby.


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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