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Emma was born on May 15th at the John Radcliffe Hospital in Oxford. I was induced at 38 weeks. It was at our dating scan that we discovered there could possibly be a complication with our baby. I chose to have the combined screening test for Down's, Edwards' and Patau's Syndrome because it was offered and the nuchal translucency measurement along with my blood results gave us a 1 in 5 chance of having a baby with Edwards Syndrome. Of course this came as a shock but my partner and I decided we didn't want further testing especially if this was so rare then maybe we would be lucky. So we said we'd wait until our baby was born.

This was a difficult time and we both became upset for a while especially when having to tell our family about it. I remember coming away from the hospital that day with very little information about it. I was given a leaflet about what happens to the chromosomes but that was it. I wasn't given any more than that and if I could go back in time this would be the only part I would change: getting more information and finding Trisomy support groups especially the Facebook groups. I didn't find these until Emma was a month old.

We were told they would like to perform extra scans and some done with a cardiologist. So we went on with our pregnancy as normal. So far our scans came back ok with nothing major. There was a small hole in her heart but that was all. I was at a scan at 37 weeks when the sonographer said our baby was really small. She gave us an estimated weight of 4lb. She explained to me that because of my screening results combined with my age and the baby's weight that the best option would be an induction. This was booked for Monday 15th at 10am. She was born at 5:20pm in what doctors describe as a spontaneous delivery. We were only in the delivery suite 20 minutes before she came out. I'll never forget how the room was filled with doctors and nurses because they wanted to prep me for an emergency c-section but they didn't have time to explain the procedure because she was suddenly there.

The paediatric consultant Sarah took over and helped Emma to start breathing. As all mothers do I panicked when I couldn't hear any baby sounds or cries. But then it came. She was absolutely perfect. She weighed 4lb 11oz. She went off to NICU while I got sorted and recovered. When we finally got to catch up with her we were so happy. The consultant had informed me that they had taken a blood sample to be tested for Edwards' Syndrome and they had requested a 3 day rush. We actually had hope that she was perfectly healthy. That evening we did a google search for Edwards' Syndrome and reading the Wikipedia article had confirmed it for me. While my partner read to me about some babies having low set ears I knew it. He was still waiting for the results but I knew my baby girl had Edwards' Syndrome. We had our results confirmed on the 3rd day. Of course we broke down and were devastated. There weren't any major complications with Emma. Only the hole in her heart was still there; they called it a VSD. She had a small hole on her lung that was trapping air in a bubble but this never got bigger. That was it. She was being tube fed and was on a tiny amount of oxygen. We were unsuccessful with getting her to breastfeed. We spent 2 and a half weeks in the hospital. They even gave us access to a flat that was on the ward. We were told that we should arrange for family and friends to visit as there was a chance she wouldn't live more than a few weeks or a month. So we did. So many visitors. The paediatric consultant Sarah would come visit before or after her shift.

The next step for us was going home. We really didn't want to spend what little time we had in hospital or a hospice. The outreach team at the hospital helped arrange all this. Sorted oxygen to be delivered. Sorted supplies for tube feeding. Introduced us to the community care nursing team. The paediatric consultant Sarah also provided information about SOFT. I didn't rush into looking further as I wanted to enjoy my baby while I had the chance. But little did we know we would be spending 3 months at home. All we wanted was for Emma to just hang on until Ralph's parents and sister could fly over from Italy at the beginning of June and meet her.

The first few weeks at home were so scary and daunting too. All I could think of was what was going to happen to her? How was she going to die? Would I find her dead in her crib one morning? Over and over I struggled through the dark morbid thoughts. Then suddenly a light of hope shone through. I eventually got to reading the SOFT website and found the care book. Then found the Facebook groups and finally met families just like me. I felt I could actually be a mother to her. Whilst we had the nursing team regularly visiting us. I took on everything myself, including her medication. We then reached 1 month old. We were shocked but thrilled. Then we started to feel like a family.

We had some problems but nothing major. Emma was constipated for a while. She got a chest infection and an ear infection. She had severe reflux. But she was alive and we were thrilled. Ralph had to go back to work which was hard for him to do. He hated leaving his little princess. But as he always has with me, he always kissed her goodbye before he left and hugged her hello when he returned. I became close friends with a lady I met on the Facebook group. Even though her little girl had passed away her daughter was so similar to Emma. I could always ask her for advice. We had lots of fun with costumes for photos. We even got out to visit people. She was doing so well. When we got to 2 months old we celebrated with a cake. We watched as she grew and changed and became a character. She had special bonding time with daddy at bath times.

We had a few hiccups with NG tubes being pulled out. We had to go to hospital one time because we were away from home visiting friends and we were having tube trouble. The NG tube wouldn't come out so they had to do an X-ray but couldn't find a reason why. At one point we thought we would need to be transferred to Oxford for surgery. We were lucky and when Emma cried in pain from having a cannula put in the NG tube just came out. Emma then came down with another chest infection shortly before we were due to meet with a consultant for a follow up appointment since Emma was first diagnosed. She spent the night in the hospital because she was having difficulty breathing. The doctors increased her oxygen and put her feeds onto a continuous flow. She recovered and the doctor said she doesn't need oxygen anymore. So we went home without it. We had achieved something. The next day came her 3 months celebrations again with cake.

But then the day after I felt different. I had just had a new mattress delivered and my plan was to make the spare room look like a nursery. But I had a bad feeling and I told myself to wait so I didn't even unpack the delivery. It was after this my world turned inside out and upside down. Wednesday 16th August was coming to an end. Ralph was due home any minute. Emma wasn't herself. She hadn't cried, gurgled or made any of her usual sounds for a while. She was due a feed and hadn't made her usual sucking indicating hunger. I had the sudden urge to hold her. So I did. Ralph came home and we ate then we fed Emma.

We having issues with the NG tube and agreed a visit from the nurse was needed. So I messaged the nurse to arrange for her to come over. It was not our usual nurse as she was on holiday so we had to wait. Ralph said if they couldn't come out to us the next day we could go to the hospital. So we sat down together about to watch a film.

Emma was snuggled on my shoulder where she loved to be. Listening to her breathing she didn't sound right. I asked Ralph to set up her oxygen. We fitted the oxygen tube and switched on the tank. Suddenly Emma threw herself backwards arching her body. I thought I was going to drop her. I couldn't even bring her head back. Then she went limp. Ralph asked me if she was breathing and I just burst into tears.  I could not see her breathing and now she was changing colour. Call an ambulance I screamed.

Ralph took her from me and laid her on the floor and cleared her airways while I was on the phone to the 999 operator who guided me through the steps of CPR until the ambulance arrived. I had to explain several times even though we had a DNR in place we were about to change it as soon as her nurse returned from her holiday so that was now invalid but I also had to explain what Edwards' Syndrome was. In the end 5 emergency responders were working together to help Emma.

I'll never forget Ralph crying out to Emma that she can't leave now because he wasn't ready to let her go. I suddenly became numb and had a sense of being paralysed while they did their job.

I tried to call the community nursing team but of course out of hours meant there was no one to answer. I even called our regular nurse knowing full well there'd be no answer. I sent a SOS message to my mum and she called and could hear my hysteria so all she said was I'll find a way to get to you. When they got Emma's pulse back they said it was time to move to the hospital. We were all in the ambulance together traveling towards Oxford. One driver and 4 crew in the back with myself and Ralph. We got to A&E and walking through other people in the waiting area as they stared with shocked faces as they could see a little baby being wheeled through. One lady ever grasped her face and took a step back. We got into the resuscitation area. It was just filled with doctors and nurses. They were shouting commands to each other. One of them was explaining what was happening and was asking me questions about what happened and I had to repeat again our wishes with our DNR. Whilst we agreed that they should do everything they can to help Emma we were not comfortable with intubation or surgical procedures.

The lead doctor explained to me that Emma had been without oxygen for too long and will suffer severe brain damage. She explained that they had done everything they could but soon Emma will stop breathing and her heart will stop.

She asked if we'd like to be alone with her and we did. So they moved us to a small room. She couldn't give me an exact time of when so Ralph and I sat together holding Emma and saying goodbye and waiting for friends to get there. My mum was still traveling 100 miles to get to me. At a minute past midnight Emma took her last breath. It was the worst moment of my life. But I will always be grateful that I got to cuddle her as she grew her angel wings. My mum made it shortly after and some of Ralph's friends did too. Then it was time for me to let her go.

Ralph and I went home with empty arms and a heavy heart. We had an enormous amount of sympathy wishes from family and friends. We arranged to have a funeral for Emma with the wonderful help from the staff at Co-Op funeral care in Chipping Norton. We had a celebrant speak at her service which was truly wonderful. Amanda did an amazing job. Her daughter even wrote and sang a song for Emma. It was a small occasion and we did a live webcast so that anyone who lived abroad or couldn't come could watch. Those that did make it wore pale colours. And during the service everyone got a chance to write a message to Emma on a heart shaped post it and attached them all to her coffin. That evening we released a lantern in her memory.

Emma will be dearly missed forever and always. Our Warrior Princess

Created: 28/01/2019 19:13

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