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Gary (my husband) and I went along to my 23 week scan, it took ages and the radiographer announced that something seemed to be wrong with the baby's brain but it could be the way it was laying. She made an appointment for us to go back the next day to see a Dr Abbas. The following day back we went feeling rather anxious. I began to cry as I lay on the couch and the doctor rather abruptly said "Can I start now?". He did the scan and told us that our baby had "Dandy Walker Syndrome" and that it would probably die shortly after birth and if it did live it would be like a vegetable. The only thing we were told we could be offered was a termination. We were devastated. We went outside into the hospital grounds and after a while Gary said to me "I'm sorry to have to put you through this but I can't terminate our baby on one man's say so." He asked for a second opinion. We were sent up to King's College Hospital the same day to see Professor Kypros Nicolaides (a brilliant man). Once we arrived at Kings we waited and waited. Eventually we were called to the scan room, I was crying and the staff were so kind. They did an extensive scan and asked many doctors to look at our baby including a heart consultant who checked that all the chambers of the heart looked OK. I looked at our baby on the monitor and said goodbye through my tears. I wondered why they were putting us through all of this? Eventually Professor Kypros Nicolaides said he wanted a neurosurgeon to look at our baby (the appointment was one week later) because he disagreed with our local hospital's diagnosis and said he thought our baby had an Arachnoid Cyst on the brain and that the prognosis was good. After an agonizing week we saw Mr Chris Chandler and he confirmed that he agreed with Professor Kypros Nicolaides. I then had a scan every four weeks until our baby was born to ensure the cyst did not get any bigger and that the brain was developing normally as far as they could see. Our beautiful daughter Anna was born Tuesday 25th January 2000 at 11.11am weighing 3.200kg (7lbs 1oz). She was examined straight away by a Registrar who said she looked fine but that she had a port wine stain on her face. Two hours after birth she had a scan through her fontanel to make sure there was no pressure on her brain and thank goodness there was none. The next day we were ready to go home, relieved that our baby was well but upset about her port wine stain. The doctor came to examine Anna, the usual formality before going home. His smiling face suddenly turned to a stern face and he abruptly left the room. He came back a little later with another doctor. We were told that Anna had a heart murmur and this had been missed when she was first examined. She had an ECG and an x-ray and we were told that we would be sent up to Great Ormond Street Hospital ("GOSH"). Anna had her first echo at nine days old. We arrived at GOSH and did not wait too long for Anna's echo. We saw Dr Miller who told us that she had a small VSD (hole in the heart) and that this should close on its own within the next few months or possibly years and that they would keep an eye on it. We were quite relieved and thought that the worst was over. Back at home again I noticed that Anna's birthmark was growing. Everyone kept saying I was imagining things but I knew it was growing. At 13 days old I took Anna to our local hospital as her lips were getting so sore and full of pus. She had an NG tube passed (tube inserted into her nose and down into her stomach) to give her a rest from feeding through the mouth. We were kept in hospital for a week and were sent home with Anna in the same condition as she went in because they did not know what was wrong with her lips. During this time her birthmark had continued to get both darker and larger. The local consultant, Dr Hood referred her to GOSH to see Professor Harper (then Dr Harper), a Dermatologist Consultant. One morning I woke up to see even more spots on Anna's face and was so alarmed I telephoned Professor Harper's secretary and luckily Dr Syed was in the office. She straight away said that it sounded as if Anna had a haemangioma and that I should come in the following week to see Professor Harper. I was so relieved and grateful that at last someone believed me when I said the birthmark was growing. By now Anna was four weeks old and on the Tuesday we went to see Professor Harper. He looked at Anna and drew some pictures of her and then said that we needed to see the cardiologist again (Dr Yates) as Anna looked like she could have "PHACE" Syndrome. He said that Anna had a 95% chance that the haemangioma would stop growing by the time she was six months old (Anna's grew until she was eight and a half months old) then it would have a rest and once she turned one it would start to regress (which it is beginning to). We were given steroids for her to take to try to stop the growth. Professor Harper said that he would also arrange a MRI scan for her. We went to see Dr Yates who gave Anna another echo. He told us that the plumbing around her heart was abnormal but that it would not cause her any problems and that the VSD would close itself. Quite good news we thought. On the Thursday Anna was admitted overnight to have the MRI scan. She was fed and then bound up like a mummy. It took four attempts to do the MRI as she kept moving. That weekend Anna's cheeks had began to turn blue and she felt as if she had tubes growing in her cheeks. I contacted GOSH and was told to take her in, which I did. Professor Harper said that the haemangioma was also growing inside of her and that he would get the MRI results as soon as possible, we were admitted to hospital again. The MRI results were not good; we were told that the internal haemangioma was extensive. She then began to develop strider (noisy breathing due airways narrowing). By five weeks old we were told she needed to have an endoscope put inside of her windpipe so that the ENT doctor, Mrs Leighton, could have a look at what was going on. We took her down to theatre for the first time. Mr Nischal (the ophthalmologist) had a look at her eyes while she was asleep and he told us Anna would need more tests. Mrs Leighton injected Anna's windpipe with steroids and she was intubated and taken to the PICU (Intensive Care Unit). We were told that the haemangioma was very extensive and that she would be left a few days; if the swelling did not go down then she would have to have a tracheotomy (hole in the throat to breathe through). We waited and each day the nurses listened for a leakage (this is a good sign that the swelling in her windpipe had gone down) but every day we were told "No". After eight days the doctors decided that they had to extrabate her and that they would do it in theatre as she had a very good chance of having to have an emergency tracheotomy. We were on tender hooks waiting for her to come back - when she did she was breathing on her own, I cried with relief. She was in PICU for a while and then she went back to the ward. We went home much relieved but we were told by the ENT Registrar that once Anna had stopped taking her oral steroids she may have problems again with the haemangioma in her windpipe. At about 15 weeks Anna began to vomit back her feeds. She was put onto Infatrini milk, which is a high energy milk to try to build her up. She had barium mill swallow and a PH Study done (these were tests done to see what was happening in her stomach). We were told there was no problem with her swallowing but that she had slight reflux. We then had to put Gaviscon into her milk; this did not work so she was eventually given Domperidone and Ranitidine, as there was blood in her vomit. She had a silk NG tube passed at 22 weeks, as she was still not thriving. Previously it took us up to two hours to try to get her to take her steroids, now we were able to put them straight down her NG tube and then be on tender hooks for two hours in case she was sick. Eventually she was put onto Pepti-junior milk, a part digested milk, and this did reduce the vomiting slightly. The Gastro team said she had so much wrong with her that they did not know why she was vomiting or if it would ever stop. Anna had another MRI scan at 15 weeks. This time she was put to sleep. The results came back and her internal haemangioma had grown more and by now her cheeks were very blue and as hard as a rock, her right eye was nearly closed. Professor Harper put up her steroid dosage. The ventricles in her brain were enlarged and Dr Aylett (neurologist) thought this was due to the haemangioma not letting the fluid drain away properly. We were also told at this point that Anna had other serious problems with her heart, they were mitral stenosis and tricuspid regurgitation, she may needed to be operated on. Dr Yates was hoping that once the haemangioma had gone the heart would not be working so hard and so it would cope. By now we had already started eye patching which sounds easy but anybody who has had to do it would know how difficult it can be. Anna cried and ripped the eye patch off constantly. Sometimes she would pull out her NG tube up to five times a day. Gary and our two sons would hold her down whilst I passed the NG tube up her nose and down into her stomach. I would then have to check the tube was actually in her stomach by drawing up stomach acid. We were told that there was a chance that the tube could go into her lungs so it was very important to test it (I hope I never have to do that again). By this point Anna was taking medicines 15 times a day (at least we could put them down her NG tube), she was taking very little milk orally. As for weaning we had no chance. We were backwards and forwards to the hospital for different check ups - sometimes being kept in for observation. Her weight was completely off of the chart by now; she was literally skin and bone. Her head was the only thing that seemed to be growing correctly which was a relief as we had to have it measured each week by the community nurses when they took Anna's blood pressure and checked her urine (this was because she was on steroids). Dr Aylett wanted her head checked to make sure it did not grow too much and lead to hydroclethus. At six months Anna was admitted to GOSH again as she began to shake. An emergency MRI was arranged which showed that nothing had changed. However we were informed that Anna had an artery missing in her neck. We were told that as she had developed this way the smaller arteries would do what the big artery should have done. We were also told that one radiographer thought that she had an arachnoid cyst at the back of the brain; another one thought that the cerebellum was slightly smaller on one side and Dr Aylett said it could even be haemangioma. They were not too concerned about it. She was developing OK but she might have problems with balance and co-ordination such as threading a needle and she would never be able to walk on a tight rope (who can). I then started to worry that she may never be able to walk (she did at 21 months). Whilst in hospital she caught Adenovirus, and she vomited even more severely than usual and had diarrhoea. After about two weeks she came home. Things were calm for a while until December 2000. Anna developed a cold and was eventually taken into GOSH on 27th December with Broncholitis. She fought it off well and we were home by 3rd January 2001. It seemed every time she got a cold it developed into something else. On 15th February 2001 once again we took Anna to Casualty as we were worried about her breathing. She had another cold. She was admitted to our local hospital and on the 19th February was transferred up to GOSH. She quickly deteriorated after arriving at GOSH, became very dehydrated and had a very high temperature. We were told she had Rotavirus. The next day an echo was arranged and Dr Yates told us that her heart had got slightly worse and that they would have to operate. We were told that if they did not operate she would probably die. The problem was because she had haemangioma inside her it might lead the surgeons to say "They won't touch her with a barge pole". He also said that she may not even get over the virus but Anna would be discussed at the weekly Thursday meeting. I was convinced we were going to lose her. She was on oxygen and was so ill. I felt in my heart that she would get over this virus and that surely they would not just leave her to die without trying to save her. Professor Harper asked Professor Spitz to come and see her. He is the top surgeon at GOSH and although he is not a heart surgeon he knows a great deal about haemangioma; He came to see her and I remember thinking that he was so rough with her, prodding her. He then said that he did not think the haemangioma would cause a problem if they operated, which was excellent news. A couple of days later we were told surgeons would operate on her and the operation was arranged for 15th March 2001. We were told that the operation was even more high risk with Anna because of the haemangioma. If they couldn't widen the valve and had to replace it she would probably die as she would have to be on Warfarin and that would probably give her internal bleeding because of the haemangioma inside. Professor Harper came to see her everyday and said to me that he was sure everything would be OK and that if she got over the operation she had every chance of growing into a healthy young woman. He'll never know how that kept us going and gave us hope. We felt as if we were living a nightmare. She did get over the virus but had to be kept on oxygen. The nurses did try to get her off of it but she was struggling too much. We couldn't bear the thought of life without her. I kept thinking I wanted to make the week before her operation as comfortable as possible in case it was her last one. After a few days Anna really picked up and we kept thinking that maybe they had made a mistake as she seemed fine. However this did not last and the weekend before her operation she became poorly again and was crying and whining continuously. On Monday 12th March she was taken to CICU (Cardiac Intensive Care Unit) as she was struggling so much to breathe. On the Tuesday morning she was given a general anaesthetic so that her body could have a rest before the operation. We went with the anaesthetist into the room where they were going to anaesthetise her. She was moaning, we kissed her and stayed with her until she was asleep. Everyone was worried in case the haemangioma in her airways caused problems when they tried to intrubate her. She was gone for quite a while and when she finally came back we were told the haemangioma had not caused any problems but that she was very ill. Suddenly the monitor they were connecting her to started bleeping; I thought that she had died. I kept jumping up but Gary assured me that it was because they were just sorting her out and wiring her up to the monitor. Her skin was grey and her birthmark was mauve; she looked terrible. Gary thought that we should go out for a coffee and come back once everything had been done. This we did and when we came back Anna was pink and her haemangioma red. We knew then she was OK. Jane Linward (the laser sister) said she never thought we would say that we were glad her haemangioma was bright red. Often the doctors and nurses would do procedures on children and all the families would have to wait outside. One afternoon Professor Harper came to see Anna. I said to him that I wished a miracle would happen and she would not need the operation. He replied that he thought maybe this operation was her miracle. Eventually Thursday came. Karl, James Gary and I were staying in a house close to GOSH. Gary and I wanted Karl and James to go to School but they insisted that they would not be able to concentrate and they wanted to be with their sister. She was to be taken to theatre around 9.30am. We arrived early so that we could spend some time with her. I wanted to cut a small piece of her hair so that I would always have something of hers. I was so frightened. Jane Linward came to see us that morning and gave us a card and big hug before she went to theatre. We were told that as she was already anaesthetised the operation would not be so long, about three hours. They actually came slightly early for her and we walked down the corridor a little way and then were told to give her a kiss as they would take her straight into theatre. Professor De Leval (one of the surgeons) said he would look after her. We were given a bleep and told to go for a walk. I did not want to leave the hospital, I didn't want to eat, I couldn't do anything. We took our boys to the Activity Centre and then went to sit in the reception area and to our surprise we met Gary's brother Paul. He said he would not have been able to work and wanted to be at the hospital close to Anna. Gary's Mum and Dad also came to the hospital and we all had a very long wait. My mum had been to see Anna nearly every day but just could not face coming on the day of the operation. I was so frightened the bleep would go off too early, which I thought would be a sign there was something wrong but it didn't and the minutes slowly ticked by. She had been gone about four hours, I was convinced that something was wrong as it had taken longer than they said. Suddenly Dr Yates came over to us. He said the operation had gone well, they had managed to repair her mitral valve and that they were waiting for an echo to be done before they sewed her up again. We were delighted but I could not be happy until I saw her. Gary suggested we went back to CICU to wait for her, which we did. Another hour passed when the nurse said we could go in to see her. We had prepared ourselves thinking she would look grey and mauve as before, but she didn't, she was pink and her haemangioma red. She was very puffy and had drains in her, a catheter and other tubes and lines attached to her. The nurse explained that because her hands and feet we so scarred from previous blood tests, catheters etc they had to put a line into her groin. Mr Cohen, the other surgeon who operated on Anna came to see us and said that the operation was straightforward and that the haemangioma had not given them any problems. He said that the next 24 hours were crucial but that he did not expect any complications. Mr Cohen and Professor de Leval are like Gods to us. They saved our beautiful daughter. The next few days she had visits from the nurses and doctors who had been looking after her in the Dermatology Ward and she received many presents and cards from them as well as from friends and relatives. After three days she was moved to a high dependency ward and then after a day in there went to Peter Pan Ward. She still did not feed and had to be fed mainly through her NG tube and she was still being sick, but she recovered well and was soon back to her old cheeky self. After ten days she was sent home, still on medicines but the Spiralactone and Frusemide were reduced to twice a day. She has since then had regular checks at GOSH and so far they have been very pleased with her. We have asked whether she will need more surgery and Dr Yates has said that he cannot say for sure but that is hoping she will not. We just hope and pray that the valve grows with her and she continues to stay well and happy. She still has check ups with dermatology, the dentist (the haemangioma has caused some of her teeth to develop with no or little enamel), audiology, ophthalmology, cardiology at GOSH and is now also under the feeding clinic at GOSH as Anna has never eaten a meal. They are positive that she will eat solid food one day but it is an uphill struggle. She is not sick anymore which is a blessing and she is off of all medicines. She has just recently been fitted with hearing aids. She has "glue ear" but the doctor is reluctant to have grommets fitted due to her haemangioma. We did have a break from eye patching for a while but we are having to do it again. The hope is that it will strengthen her weak eye. Eye patching is much easier now that she is older. She does not pull off the eye patch or cry so much. On 6th November 2001 Anna was very miserable, she had a cold. I put her to bed and thought that she had gone to sleep. When I checked her a few minutes later she was staring to the left. I kept shouting at her but she did not respond. I telephoned Gary and told him to come straight home. When he arrived he said to call an ambulance, which I did. The ambulance arrived and the ambulance driver said that she felt hot and put her on oxygen once inside the ambulance as her SATS were low (oxygen in the blood). On arrival at the hospital Anna started to dribble, after a while she started to shake only down one side. Suddenly there were quite a few staff around her and they gave her some Diazepam. I was frantic, Gary sent me out of the cubicle - I think I was just in the way - when I came back I heard a nurse saying they had taken the little one round to the resuscitation room. I asked if she was talking about Anna and she said yes. I just caught them going into the room with her and hooking her up to the monitor. Gary and I were crying thinking that she was going to die. There was still many staff around her and after a while the Sister came over to us and said not to worry that they were just checking everything was OK. We were soon allowed to go to her bedside. What a relief. We tried to talk to her when she was taken up to the ward, but she did not respond to us. Eventually she went to sleep and when she awoke she slowly began to be like her normal self. We were told that they thought it may have been a Focal Febrile Convulsion but that they were not sure and she did not have a temperature on reaching the hospital. Dr Aylett (the neurologist) said that she does not really need to see Anna any more as she is checked every six months at our local hospital for her development. She is also under Alison Riches, a speech therapist as she has delay in her speech due to all what she has been through. Also she has health checks with Dr Schuller. Every time we go out we have to prepare ourselves for stares and sometimes cruel comments. Just to walk to the end of our road causes my heart to sink because when I see people walking towards us I know what their reaction will be. Even so Anna's haemangioma has considerably reduced since she was a baby, with the help of two laserings. She is such a wonderful child and everyone who knows her looks past her haemangioma. The one thing that gives us strength to carry on and face all those staring people is the fact that we are so grateful and lucky she is alive. We do worry what effect the haemangioma is going to have on her and she still has hurdles to overcome but she is getting there and we hope and pray she carries on doing well. We have searched the Internet, read articles, spoke to people to find the best doctor in the world to operate on Anna. With the help of another mother whose daughter also has a haemangioma we have contacted Dr Waner. He specializes in operating on vascular birthmarks. After about 18 months wait we are going to see Dr Waner in Berlin, for the first time, at the beginning of 2004. He has agreed to work out a plan of action of how to treat Anna's haemangioma to give her as "normal" a face as possible. We are so grateful to him. Thank you for reading Anna's story. We wish to dedicate it to all the wonderful staff at Great Ormond Street who saved her life.
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