TALK TO A
Established April 15, 1995
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10 March 2000
My second daughter, Alison, suffered a massive cerebral haemorrhage on the 16th October 1998 and was taken off life support following organ donation on the 17th October 1998.
She woke up at 0615 on the 16th crying with the pain in her head. I was immediately alarmed as Alison had numerous medical problems and was "used" to dealing with pain. She said "Mum, my head it feels like it is going to explode! There's something wrong-call the doctor!" By 0630 she was unconscious and whilst I was ringing the ambulance she stopped breathing. I resuscitated her until the "ambos" arrived and of course they seemed to presume that she had overdosed! I told them in no uncertain terms that "it's not drugs!!"
She was transported to hospital and was immediately intubated and ventilated.At about 0900 she had a CT scan and the Emergency Doctor came and told me he had "very, very bad news". She had sustained a Gr 5 subarachnoid haemorrhage and was gravely ill.
My husband and eldest daughter were living in another state at the time, so I had to try and get in touch with them and get them to fly up to us. Meanwhile my two other children were at home wondering what was happening. Al's wonderful boyfriend, James arrived and was with me when we first found out the terrible news. We both went up to ICU to see her and she was just lying there attached to all the machinery and looking so perfect and beautiful - it was just so hard to comprehend that she was so ill. I am a nurse (but had only been working in midwifery for the last 12 years) so I at least had some knowledge and understanding of what was going on.
At 1100 we had a conference with the ICU Doctor and he showed us the CT scan and explained that the damage was so severe that he did not expect Alison to survive. My reaction was that she needed to live long enough so her Dad and older sister Rebecca could see her, and also I wanted to be able to donate her organs as something good had to come out of t his horrific nightmare. We had actually discussed organ donation at some stage so I knew she would approve.
My husband arrived that afternoon at about 1530 and could not cope with seeing his little girl so helpless - he could not discuss the organ donation and left the decision up to me. Rebecca arrived at 2130 with my Mum and we all stayed with her throughout the night. Mark and Justine, our younger children were there most of the day but went home overnight with a cousin. My poor children found it so difficult to see their 18 year old sister in such a condition. Although we knew she was "brain-dead" we still talked to her, played her favorite CDs and touched and kissed her. We had to hope that her spirit was still around to hear how much we loved her and were going to miss her.
She was finally pronounced brain dead at 1348 on the 17th October. She was taken to OT at 2100 that night. We went back to see her after the operation at about 0200 and she didn't have any tubes to hide her lovely face - she looked as though she was just asleep. They were able to transplant her liver (to a toddler girl), her lungs (to a teenage girl) her kidneys (to two adults -a male and female both with families) and although her heart was too damaged they took her heart valves, so two other people would have benefited. It is of some comfort that her death was not a "waste" but we would still rather have her with us-no matter what her condition.
We requested an autopsy because they did not know "why" she had had the bleed, and six weeks later they said it was from a ruptured AVM in the cerebellum, and that it was not hereditary and we didn't need to be concerned for our other children. For lots of reasons I did some research and decided that I wanted our other children checked out so I wouldn't worry every time one of them complained of a headache! Unfortunately in January 1999 we found out that Rebecca also has an AVM. It is in the peri-ventricular area on the left side of her brain and although only small they thought it should be treated. It was too deep to operate on so she had radiosurgery in April 1999 and it will be 2001 before we know if it has been eradicated. Mark and Justine do not have any AVMs in the brain but there is no guarantee that they do not have them elsewhere in their body.
I was totally devastated when we found out about Rebecca - she had always been the healthiest of all the children and I couldn't believe that it could possibly be happening!
I have spoken to so many doctors and had so much conflicting information. It seems that if they haven't come across it then it doesn't exist! (For SOME Doctors anyway.) We are currently being investigated for a possible connective tissue disease which may or may not be associated with the AVMs. Whatever the diagnosis the next generation will have to be screened. I often wonder what else is ahead for us and why did my darling girl have to die for us to find out this condition affected us?
Update 1 Jun 2000
Rebecca had her one year MRI in early April and we were to see the Doctor together on the 17th April to get the result. I was in Melbourne to watch my youngest daughter Justine, as she was competing in the National Diving Championships, so I was really looking forward to seeing the Doctor and asking lots of questions as I had not had the opportunity to see him before. He must have realized and sent Rebecca a letter with the result a few days before I arrived in Melbourne!! Didn't want to face an anxious Mother's questions!!
The results stated that there was a reduction in the size of the AVM but as they needed to make sure it was all gone she would need another MRI in 9 months. I was relieved to hear that it had reduced but would have liked to know if it had reduced "according to expectations" or was even "more than expected". I am sure it is good news but will not be really satisfied until I hear that it is GONE!! Having an adult daughter undergoing treatment means you don't get to really know the details but it doesn't stop you worrying just as much as ever. Probably because of my nursing background I am used to having a reasonable knowledge of health problems and am aware of more, therefore have more to worry about. Also having already lost Alison I am so concerned about the same thing happening to Rebecca. I know that it isn't likely to happen but as we don't know what triggered Alison's bleed how can I rest until I know that Rebecca is "safe"?
Going to Nationals was also difficult - seeing all the kids that Alison used to compete against and people that I hadn't seen since Al died. We have also celebrated the three girls' Birthdays and the Annual Thanksgiving Service in memory of Organ Donors - so it has been a tough few months.
It is wonderful to hear of all the "good" outcomes through this support group - it gives me hope that even though we have lost Alison, Rebecca has every chance of being cured. Thanks for all the messages I have received.
Update 3 Jul 2001
Rebecca has finally been given the wonderful news that they are 99.9% sure that the AVM has been eradicated. She had the MRI about a month ago and was told that she could have an angiogram to make 100% sure, but she doesn't want to go ahead with that! It was a great relief to receive that news and I am so grateful that she has come through unscathed.
Even though it is a huge relief to know that Rebecca is OK, it is still so difficult to come to terms with the fact that Alison did not get the chance for treatment. Don't get me wrong, I AM so grateful that Becs is OK - I just still miss Alison so much. She would have been 21 on the 19th May this year and her two friends that were born three weeks after Al celebrated their 21st together - something they had all spoken about doing when they were small - I am sure she would have been there to help celebrate and look after them!!
I have started a web page for AVM patients in Australia and would welcome any input from anyone - especially information about doctors and/or centres that are familiar with treating AVMs in Australia. When I started researching soon after Alison died it was very difficult to find any information based in Australia, so I am hoping to establish a network of patients and medicos so that information is spread all over the country. I will never forget being told by a leading neurosurgeon in Brisbane that he had never heard of siblings with AVMs, and also being told by a Professor of Neurology that there was no treatment for AVMs anyway so there was no real point in having the children checked for them!! Needless to say every medico I come across these days is given the facts!
I would also welcome any info from anyone who has had a pregnancy after radiosurgery for an AVM - I am "jumping the gun" a bit, but I hope one day to become a Grandmother so would like to hear of others' experiences so that maybe I will not worry quite so much when the time eventually comes!!
Thanks once again for the support I have received from numerous people over the last 15 months or so!
Update 30 July 2009
A lot has happened since I last sent in an update. Our Family was shattered when we lost Alison and never truly recovered as her father could not cope and moved away from us. This had a devastating effect on us all but we have come through even stronger than before.
Rebecca after changing study courses ended up with a degree in Economics and Finance and then went on to do a Graduate Diploma in Education which allowed her to become a teacher. She spent 3 years working and travelling in London UK before returning to Melbourne and working at her old school as a Maths teacher. She met a lovely man in Sept 2007 and they married in April this year and are expecting their first baby in March 2010!!!! She had tests earlier in the year and as far as we can tell there is no expectation of any further problems with her AVM - so although I am a bit anxious I am trying not to worry.
We still don't know if there is a "disorder" that we fit into - at the moment Rebecca is on the waiting list to see the Geneticists again with the possibility of being checked for CM-AVM disorder. It would be good to know if we do belong to a specific problem rather than not knowing which symptoms are related or not...
My son is living in Adelaide with his partner and my youngest daughter is now living and working in London (hopefully home again next year) - so I don't have any of them living with me in Brisbane at the moment. Luckily I have met a lovely man also and he is amazingly supportive to me. Even though he never met Alison he is happy to let me talk about her and comes with me to the cemetery to visit when I need to. We were married in April of 2007.
I have continued to be involved in Organ Donor Awareness and Paul and I are also on the Organising Committee for the World Transplant Games to be held on the Gold Coast in August 2009, so that is keeping us busy at the moment...
I look forward to updating again next year with a photo of my first Grandchild!!!
You are invited to visit my Memorial To Alison
Update: 20 August 2011
It has been a while since I have updated our story - Rebecca decided after lots of advice to proceed with a Caesarian Section to make sure of a safe delivery of her baby and she had a beautiful little boy called "Alexander William" in March 2010. He is such a joy for us all. She had some genetic testing earlier this year and will get the results in October. Unfortunately we have been absolutely shocked in the last two weeks to have her diagnosed with breast cancer. She has had surgery and she now has to undergo chemotherapy then radiation and then hormone therapy. They are still living in Melbourne at the moment but will be moving to Brisbane to be closer to us in early November hopefully. Her treatment will start in the next 4-5 weeks but in the meantime they have to decide if they will proceed with IVF so that they might be able to have another baby in a few years if treatment is successful. Needless to say it has been a dreadful shock - she is only 33. I will be so glad when they are able to move up here and we will be able to really look after them and give them the support they will need..after losing Alison and then having Becs' AVM diagnosed I just can't believe that we now have to help her fight breast cancer..
© Copyright 2000 Majella Gillett
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