Charlotte

In March 2006, we found out I was pregnant. It was not a planned pregnancy however we were both very happy with the surprise. It was around the 8 week mark that 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 I was put on anti-sickness medication to help

By the time we went for the detailed scan at 21 weeks I was feeling so much better. Charlie and my mother-in-law, went with me to the appointment. I was looking forward to seeing our baby. I never thought for one second they would find any problems.

During the scan the sonographer explained that she thought it best for the doctor to have a look. The doctor came and finished the scan. We were then asked to go to the day ward as she 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. She explained that these were all markers for Trisomy 18. When they explained to me about our baby’s outlook and due to the VSD her chances of surviving birth were minimal.

I was in total shock and just wanted to end the pregnancy then and there. We were then booked in the following week for an amniocentesis to confirm the diagnosis.  The midwife handed me a booklet for ARC and in it was the number for SOFT UK.

That night I just cried and cried and hoped that there was a mistake. I hoped that I would miscarry so that any decisions we had to make were taken out of our hands. We decided that it would be best to end the pregnancy.

By the following day, I was starting to feel differently. This baby was kicking and kicking, to me what they said about her survival just didn’t make sense. We then started to question if ending the pregnancy was the right thing to do for all of us. We started thinking maybe we could make the decision of letting nature take its course.

After looking up Trisomy 18 we realized that the baby could die but also she could live. After taking a few weeks to really think through our decision we finally went for the amniocentesis. The results of the amniocentesis came back just before 24 weeks. The results confirmed that she had full Trisomy 18 and that we were having a girl whom we named Charlotte.

I remember feeling so alone. Whilst other mothers were preparing nurseries, we were trying to have hope that she could survive but also facing the fact that we could lose her. Doing simple things became challenging like going to ASDA and avoiding the baby section. People would ask how the pregnancy was going; the look on so many faces and awkward silences when we explained was so very difficult to handle. It was the loneliness that made me contact SOFT. That very first phone call was one I would remember as being life changing. I spoke to Liz and she was like a light in a very dark and lonely place. She spoke of her experience openly and what I got from her was hope, she was so positive when sharing her son's journey. She took the loneliness away from me.

I truly felt so supported. We were also put in touch with another parent who had a live child and a great friendship began. We continued the pregnancy with the support of SOFT and attended the Scottish family day in October. It was so comforting to be surrounded by so many lovely understanding people.

On 26 November, we were visiting my mum who lived 2 hours away from our hospital, whilst there I went into labour. We called the hospital and we started to make our way there. On route, I made Charlie stop at a layby beside a forest walk as I didn't think we were going to make it. The ambulance just made it in time by 3 minutes! Charlotte was born in the ambulance in the layby, well so much for the birth plan...

We then got to the hospital and after an assessment of Charlotte we were told that she could die at any time. We were given at most hours. We were moved to a special unit which was for baby loss and our family came in to meet her.

Charlotte however had other plans and as hours passed she was still with us. She was then given an oral feeding tube and moved to the neonatal ward. I refused to leave her as every minute was precious.  The hospital moved us back to the original ward as that was where we were most comfortable. The following day we were moved again to a ward within neonatal where the medical teams continued to assess Charlotte. It was then decided it was best we learnt how to feed her and pass the tubes so that we could take her home.

After only 4 days we were home with Charlotte. The day after we got Charlotte home she took her first apnoea attack and we thought we were losing her. She continued to have them throughout the following night.

She seemed to be most comfortable in her bed, so we lay her down not knowing if she would survive the night. We both actually managed to get some sleep because we knew that we had to have some strength left for the next day. The next day her feeds were reduced and she stopped having the attacks. The rollercoaster of emotions was so intense.

We began to understand Charlotte, not her as the baby with Trisomy 18 but her as our daughter. She didn't like her car seat, she loved listening to her dad's voice and watching cbeebies. The apnoea attacks often happened when she was ill, when she got a cold. Charlotte had 2 hospital stays at the sick kids, no more than a week each time. We attended CHAS the children's hospice where we got some well-earned rest and were looked after by the whole team. We were also given open access to the children's hospital when we needed a rest.

About mid-morning of 29 May, I went to check on Charlotte. She had been awake earlier and went for a sleep in her chair. She had a cold and was starting to recover.

When I checked on her she had died. There was no warning. I called the doctor and the ambulance arrived. She had a DNR and we showed it to the paramedics, she had gone so peacefully I felt it was best to let her go. We had 6 months and 3 days with her.

In that time, she was taken to the beach so she could hear the waves, she felt the snow on her face when the snow came.  She gave us so much in her life and we feel so very blessed to have had her.

Laura, Charlie and family