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Gone too soon - Emma

“Emma Sim was born on May 15th 2017 at the John Radcliffe Hospital in Oxford. I was induced at 38 weeks. It was at our dating scan that we discovered there could 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 it was the nuchal translucency measurement along with my blood results that gave me a 1 in 5 chance of having a baby with Trisomy 13/18. 

Of course this came as a shock and we had no idea about Edward's or Patau's Syndrome, but my partner and I decided we didn't want further testing especially because this came with risks and if this was so rare then maybe we would be lucky. So we said we'd wait until our baby was born and a long wait it was. Whilst this was a difficult time and we both became worried and upset 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 anymore than that and if I could go back in time this would be the only part I change. Getting more information and finding Trisomy support groups (I didn't find these until Emma was a month old). 

We were told at the hospital that they would like to perform extra scans to monitor the baby and some done with a cardiologist. So we went on with our pregnancy as normal as we could. The scans came back ok with nothing major. There was a small hole in her heart but that was all. It was at a scan at 37 weeks when the sonographer said our baby was really small. She gave 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 which meant she popped out very quickly. 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 Dr Sarah Reynolds took over and helped Emma to start breathing. As all mothers do I panicked when I couldn't here 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 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, Ralph read to me about the physical features common with Trisomy and some babies having low set ears I knew it from that moment. Ralph was adamant to wait for the results first but I knew deep down I knew my baby girl had Edward's Syndrome. 

We had our results confirmed on the 3rd day. Of course we broke down and were devastated. Our daughter was sick and there was nothing we could do for her. There wasn't any major complications with Emma. The hole in her heart was still there. They called it a VSD. She also had a small hole on her long that was trapping air in a bubble but this never got bigger. That was it. We were unsuccessful with getting her to breastfeed so she was being fed via a NG tube and was on a tiny amount of oxygen. We spent 2 and a half weeks in the hospital NICU. The amazing staff at the Radcliffe Hospital even gave us access to a flat that was on the ward. It was provided to families in our situation who likely wouldn't go home with their baby. 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. Even Dr Sarah Reynolds would also come visit before or after her shift. 

Our only wish was for us to go home and spend what little time we had left as a family. Away from the machines and the hospital environment. Being able to be together privately and in comfort. We really didn't want to spend that precious time in hospital or a hospice. The outreach team at the hospital helped arrange all this. From getting oxygen delivered to our house to supplies for tube feeding and introduced us to the community care nursing team who’d be visiting us at home. 

With Ralph’s family living in a different country we were praying for Emma to just hang on until his parents and sister could fly over at the beginning of June and meet her. The first few weeks at home were so scary and daunting too. All could think about was what was going to happen to her? How was she going to die? Would I find her not breathing in her crib one morning? Over and over I struggled through the dark morbid thoughts. Then suddenly a light of hope shone through. I found some groups on Facebook and finally met families just like me. I felt I could actually be a mother to her. I met some wonderful families through these groups and grateful for the support they offered. I met a lady who gave me so much advice and even though her little girl had grew her angel wings she was still willing to chat with me as our little girls had so much in common.

Whilst we had the nursing team regularly visiting us we became quite close to Emma's nurse who was also called Sarah. She was so supportive and helped us so much and I will forever be eternal grateful for her help and support. I took on everything myself, the tube feeding every 3 hours and her giving her medication. Emma fought everyday and we battled many problems typically associated with Trisomy 18. 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. We reached 1 month old. We were shocked but grateful we had been given the time. Then we started to feel like a family. It almost felt normal. We had visits from the GP and health visitor. We even had a visit from a speech and language therapist who gave us support with trying to start Emma on bottle feeding. 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 kissed her goodbye before he left and hugged her hello when he returned home. 

We had lots of fun with costumes for photos. I got a bit crazy taking so many photos I even set up an Instagram profile for Emma. We even got out to visit people. She was doing so well. When we got to 2 months old we celebrated and had a cake. We watched as she grew and changed and became a character. She had special bonding time with daddy at bath times. Everyone who met her fell in love with her. We had a few hiccups with NG tubes being pulled out. One time we had to go to hospital 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 for surgery. We were fortunate 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 was having difficulty breathing so we went to hospital. The doctor increased her oxygen and put her feeds onto a continuous flow. She started to recover and the doctor said she doesn't need oxygen anymore. So we went home with out it. There wasn't any issues. 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 this sense of darkness. I had not long had a new cot mattress delivered and my plan was to make the spare room look like a nursery for Emma. But I had a bad feeling and I told myself to wait so I didn't even unpack the delivery. It was the day after this my world 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 and never let her go. So I did and cuddled her until Ralph came home. Her favourite spot was to rest her head on my shoulder while I cuddled her.  We ate then we fed Emma. We were 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. Ralph said if they couldn't come out to us the next day we would go to the hospital. So we sat down together about to watch tv. 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. He started fitting the oxygen tubes and switched on the tank. Suddenly Emma through 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 and I went numb. Ralph kept asking 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 had changed our minds and we were about to change it as soon as her nurse Sarah returned from her holiday so that was now invalid but I also had to explain what Edward's Syndrome was. Trying to do this while being in a state of hysteria if extremely difficult.

In the end 5 emergency responders were working together to help Emma. I'll never forget Ralph crying out to her that she can't leave now because he wasn't ready to let her go. I suddenly became still and had a sense of being paralysed while they did what all they could. I even tried to call the community nursing team but of course out of hours meant there was no one to answer and even though I knew this was the case I still did it. I sent a SOS message to my mum and she called and could hear my cries 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 even grasped her face and took a step back as we passed. 

We got into the resuscitation area. It was just filled with doctors and nurses and machines. They were shouting commands to each other. One of them was explaining what was happening and 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 would stop breathing and her heart will stop beating. She asked if we'd like to be alone with her and we did. 

So they moved us to a small room. It wasn't really a suitable room but at least it had a door. The doctor couldn't give us an exact time of when it would happen so Ralph and I sat together holding Emma and saying goodbye and waiting for friends and family to get there. My mum was still traveling the 100 miles to get to me. At a minute past midnight Emma took her last breath. It was the worst moment of our lives. But I will always be grateful that I got to hold her as she grew her angel wings. She blessed us with 3 months filled with beautiful memories and surrounded by love from family and friends. Then it was time for me to let her go.  This was a very difficult moment. Ralph and I went home with empty arms and heavy hearts because for us we had lost our most precious gift. 

But there was still more difficulty to come. We had an enormous amount of sympathy wishes from family and friends both near and far even Dr Sarah Reynolds sent some wonderful words. We had a visit from wonderful volunteer photographer from Remember My Baby. We arranged to have a funeral for her with the wonderful help from the staff at Co-Op funeral care in Chipping Norton. We had a celebrant called Amanda speak at her service which was truly wonderful and she 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 and Emma's community nurses came too. During the service everyone got a chance to write messages to Emma on pink hearts and attached them all to her coffin and that evening Ralph and I released a lantern in her memory. We keep Emma's ashes in an urn surrounded by her things and keepsakes. I sent most of her clothes to be made into keepsake animals and now I make keepsakes to raise money for Emily’s Star who have been an inspiration to keep Emma's memory alive and raise awareness for Trisomy 18. 

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

If you would like more information about Trisomy 13 or 18 you can contact SOFT UK online at www.soft.org.uk