I found out that I was expecting identical twins at my 12 week scan and with no history of twins in our family this came as a very huge shock. Due to the complications that twin pregnancies can come with I was scanned again at 16 weeks and it was at this point it was discovered that I had a condition called Twin to Twin Transfusion which can put both babies life at risk depending on the severity. Initially mine was only thought to be mild but they made a decision to monitor/scan me regularly to keep a close eye on the babies. At 20 weeks we were told that we were expecting twin boys who we named Alfie and Charlie and which we were over the moon about. At a scan at 25 weeks at my local hospital the sonographer picked up an ‘abnormality’ in one of the Alfie’s brain – we were obviously devastated and immediately started to worry about what was wrong and what the future would hold. We were referred to our local fetal medicine unit in Newcastle where we were first told of the diagnosis of Vein of Galen Malformation. It felt like a very dark day and what had already been a pregnancy fraught with difficulty just seemed to become that much harder. We were given a lot of information by the doctors but none were experts and we felt lost. We left the hospital and came home and began to do a lot of online research which probably didn’t help as although there were many positive outcomes there were also those that weren’t.
We continued to be monitored weekly not only for Vein of Galen malformation but also the Twin to Twin Transfusion which was still putting both babies life’s at risk. I was given a choice about where Alfie could be treated and came to decision that we would go to London to Great Ormond Street Hospital as we had family and friends who would be able to support us through what was to come.
I travelled to London for the first time at 32 weeks pregnant as the Twin 2 Twin transfusion had started to cause complications for the boys. I had been told by local hospital that usually they would deliver the babies at this point but Alfies VOG made this not a straight forward decision. I arrived at UCHL to meet a large team of doctors including Dr Stefan Brew who would discuss what was the best plan for the boys. They basically told us that if the boys were delivered at this point and Alfie was born unwell then he would have very little chance of survival. We were told they had previously operated on 5 babies born pre 36 weeks all who had died. We were given the choice as to whether deliver the boys immediately, but we knew that the best chance of both babies surviving was try and get my pregnancy to 36 weeks.
We travelled home on the Monday and I was to be scanned every few days. By the Thursday things had deteriorated to the point that we had already been told if it got to this stage they would have no choice but to deliver the babies. So we were sent immediately back to London and by Friday the team was ready to deliver the boys. They were born at 33 weeks gestation on 07/08/09 Alfie weighing 4lb 1 and Charlie 4lb 2. I got to hold Alfie very briefly before he was taken to intensive care at Great Ormond Street. Alfie was doing very well initially and Dr Brew had told us he would like to wait 4 weeks so that Alfie could grow and gain weight and he would remain at Great Ormond Street till they could perform the first embolisation at 37 weeks. However Alfie’s health started to deteriorate 1 week later and he started to show early signs of heart falure. This was one of the worst days of our lives because we knew his only chance of survival was to have the embolisation but history dictated that he stood a very slim chance of survival. He was taken down to theatre at lunchtime and waiting to hear whether or not he had survived was one of the darkest moments of our lives. We cried and cried when we told he was on his way back from theatre and although he suffered a small bleed to the brain post op he defied all the odds and began to recover. Dr Brew said that he would still need further surgery as he had not managed to seal the artery but wanted wait another 6 months to allow Alfie to grow. So after 5 weeks in hospital we took our boys home.
Alfie was doing really well at home and all the doctors involved were really pleased with his progress. In January 2010 we travelled to London for his second embolisation. This again went very well and Alfie was discharged from hospital within 2 days. His development was deemed as ‘normal’ and he was doing everything his brother could do and more. Following another MRI in November 2010 the team at Great Ormond Street were hopeful that they had potentially sealed the artery and he was booked in for Angiogram in January 2011 which would give an accurate answer as to whether he was ‘cured’. In February 2011 we were given the news that we have dreamed of and that the artery is totally sealed and Alfie will require no further treatment. Dr Brew has told us to go away and live our lives as normal and that hopefully Alfie will have no memory of what he has been though.
Alfie is the happiest little boy you could ever wish to meet he laughs at anything and anyone and is as mischievous as any little boy his age. We are extremely blessed that he is in our lives and we are looking forward to the future and will be eternally grateful to Dr Stefan Brew and all those involved in saving our sons life – he truly is a miracle.
- First time surgery at Golisano Children's Hospital - 13WHAM-TV April 8, 2017
- Haylie Howe, 6, Cured Of Vein Of Galen Malformation, Deadly Brain Disorder - Huffington Post April 9, 2013
- Vein of Galen Arteriovenous Malformation in a Neonate - Healio October 22, 2015
- Good news for Sutton toddler Oliver Martin following major surgery at hospital in London - Craven Herald June 8, 2017
- 6-Year-Old Girl Cured of Deadly Brain Malformation - ABC News April 3, 2013
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