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Charlotte (26 Nov 2006 - 29 May 07)

Charlotte_medium

In March 2006 we found out I was pregnant. The pregnancy was not planned and came as a total shock to both of us and it was around the eight week mark I began suffering from all day sickness.

I was sick with my daughter Faith right through the pregnancy so I was not surprised I was feeling so unwell. I gradually got worse and soon was unable to even keep water down. At that stage I was taken in to hospital and put on a drip for two days, a scan showed the baby looked fine. I was given anti sickness drugs and sent home. 

By the time I went for the detailed scan at 21 weeks I was feeling much better. Charlie and I decided it would be nice if his mum accompanied me to the detailed scan. I was looking forward to seeing our baby, trying to work out whether baby was a he or a she. It never crossed my mind that they would find any problems. During the scan the woman explained that she thought it best a doctor have a look. The doctor then finished the scan and we were asked to the day ward as they needed to talk with us. Eventually the doctor came in and explained that the baby had cysts on the brain, a ventricular septal defect (VSD) and clenched hands which all pointed to trisomy 18. I was in total shock. When they told me the outlook was bad I just wanted to get a termination then. We were booked in for a test the following week to confirm the diagnosis. That night I just cried and cried hoping that none of this was happening, hoping I would just miscarry. The midwife handed me a book from Ark explaining the process of termination and in it was the contact number for soft.

By the following day I was starting to feel a bit different. This baby was kicking and kicking and what they said didn’t make sense. For a baby that was so ill she was doing a lot of moving. Charlie commented was termination the answer? What about letting nature take its course? The following day I finally looked up trisomy18 on the internet. We realised that yes the baby could die but could also live. If there was a one percent chance then there was still a chance.

On the day of the test, we explained to the doctors how we were feeling and that we were thinking it best to carry on and let nature take its course. They explained the importance of the test as they felt it was best for the baby. We were told that if the baby did not have trisomy 18 then the heart specialists at Glasgow would become involved but the specialists would not see us until trisomy 18 was ruled out. We were not happy with this. We were not keen taking the test for fear of miscarrying. The specialists at Glasgow were contacted and did agree to see us. They told us the outcome was very poor if they baby had trisomy 18 and the chances were the baby would not survive the birth. I just couldn’t accept this, as all she did was kick.

At 23 weeks we decided to take the test. The following Tuesday I got a phone call to say the results were back and that we had to go in to the hospital. We were just devastated but in a way it was a relief as we knew what condition our baby had. At this point she became Charlotte. I remember feeling so alone. While other mothers were preparing nurseries, I was trying to prepare my self knowing we were going to lose our child. Charlie commented that he could not imagine feeling those kicks constantly. Simple things like going to Asda and seeing the baby section were a challenge. Were we to buy things? I remember visiting the local graveyard as I wanted to know where the she would eventually go. It was something that I felt I had to prepare for.

People would ask how the pregnancy was going and the look on their faces when they were told was horror. It was the loneliness that pushed me to contact soft; I was not the only one in this situation. I got in contact with Liz one afternoon and suddenly everything changed. The loneliness had gone I felt so positive even though I knew the eventual out come. Speaking with her made me feel normal. I can’t explain how much talking with Liz helped. I remember thinking at the time that if someone offered me a healthy baby and take Charlotte away I would say no as I was bonding with her. Charlie was trying to feel her kicks so he was bonding with her too. She was our special baby and the trisomy 18 was part of her.

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That Friday we went back to Aberdeen to have another scan and we were introduced to a doctor. He told us that we should go for a termination and there was no such thing as partial Edwards Syndrome. He was very negative and totally unsupportive and we were left devastated by his comments. I knew he was wrong as I had read about it and realised at that point not to believe everything we were being told, there were to be no definite answers. Through SOFT I got in contact with Sue, Sophie’s mum, and she was very supportive and has since become a very great friend. Charlie and I also attended the Scottish SOFT conference in October. We went for private 3d scans so we could have as many memories of Charlotte as we could.

On Sunday November 26th we were visiting my mum who lived 2 hours away. It was ten days before Charlottes due date and we hadn’t gone anywhere for weeks for fear of going in to labour. Whilst at my mums I discovered I was in labour and called Aberdeen Maternity hospital. They said to head to them as I explained I could not be far on. On route I made Charlie stop as I wasn’t sure we were going to make it. We called for an ambulance and pulled in to a lay-by. Within minutes of the ambulance arriving Charlotte was born, what an entrance!

At the hospital she was admitted to the Rubislaw ward where babies go who have little chance of survival. It was clear that the doctors were unsure what to do as they had not expected her to go past a few hours. However, she would not take a bottle and was given an oral feeding tube. She was then taken to the neo natal ward. We refused to leave her because we did not know how long we would have her for. They moved her back to the Rubislaw ward so we could all be comfortable and a neo natal nurse came and fed her. The following day she was moved to an area in the neo natal ward where we could stay with her and be shown how to feed her. There we learned how to pass her tubes. Charlie was very confident, his son from a previous relationship was in the neo natal for 2 months so this was not unfamiliar to him. After 4 days in neo natal Charlotte came home. We were told to contact the neo natal ward if we were having any problems and would have the following up appointments there.

That first Saturday she had an apnoea attack. We thought this was her time but she came round although she kept having more attacks. She seemed to be more comfortable in her bed than us holding her. That night we put her back in her bed and we some how went to sleep knowing that she might not make the night.  The following day we changed her tube but we had trouble when it came time for her next feed. We called the ward and they said to take her in but we didn’t want to move her as we were scared we might loose her on route. However she had improved so we called and explained this to the neo natal ward.

We discovered that the more we tried to increase her feeds the more it brought on apnoea attacks. We increased the feeds at a slower pace and this seemed to work best for her. We also kept her upright as much as possible as she seemed to be more settled. We referred to the SOFT booklets to help us look after Charlotte as the medical professionals we saw had little or no experience with live Edwards’s babies or children. Her VSD was checked during one appointment and they found it was getting smaller.

When Charlotte was about 2 months she kept having apnoea attacks so I called an ambulance. She was taken to the Aberdeen sick kid’s hospital where they found she had a urinary tract infection. She stayed for 5 days and they were excellent. They arranged for her to have open access to the hospital and for a close friend to be trained in tube feeding to allow us to have a break. We also visited Robin house, which is the children’s hospice for respite. At around 4 months she started smiling. Her feeding was becoming more difficult so she was put on a feeding pump. The sick kids people also arranged for everyone who was involved with her care to attend a meeting so that a care plan could be put in place. I remember being asked what our wish list for her was. Charlie and I knew she was not doing as well as she had been before and one of her doctors discussed with me a non resuscitation order in the event that she passed away at home. I signed it and put it to the back of my mind. For the last 4 months we had enjoyed and cherished every day with her. I wasn’t going to let the thought of this form spoil what time we had left with her.

During her life we had a few scary moments when we thought were going to loose her. On Sunday May 27th 2007 Charlotte was doing fine but on the Monday morning she had caught a cold. We were moving house that day but I had seen her a lot worse so we weren’t too worried and carried on with the move. That evening she was still poorly but again we had seen her worse. The following morning she seemed to be doing better. I spoke with the Sick Kids people about her and was about to go get medicine f as discussed with the hospital to help with her feeds. I went to check her and discovered she had passed away in her favourite chair. I called for the ambulance and showed them the non resuscitation order; to be honest I never really believed I would have to use it. I thought she would pass away at the hospital. I Called Charlie and told him to come home, I didn’t need to say why. When the paramedics checked her I removed her feeding tube.

We visited her everyday at the funeral home, gave her the best send off we possibly could and both feel we did her proud. We carried her in and out of the church and to her graveside. She had us with her throughout. For the 6 months and 3 days we had her she was loved and cherished everyday. We knew she was special. When the snow came we let her feel it on her face, we let her smell the salt from the sea and in return she gave us more than we could ever have imagined. She taught us so much and still continues to do so. We hurt because she has passed on but feel blessed that we had her.

 by Laura

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