Sophie Elizabeth’s Story

I am mother to two wonderful teenage boys and one beautiful baby girl Sophie Elizabeth who is living in heaven. There are no words to express how glad I am that you chose me to be your mother Sophes, or to explain just how sad I feel that you are no longer with me here on earth. I cant say how grateful I am that I still have my boys, or how I would have coped without their love and unbeknown to them, giving me a reason to go on.

I was thirty nine when I found out I was pregnant with another baby, it was a shock in part, but then we hadn’t been particularly careful of late!! I had thought my baby days were over, I had my two wonderful boys, I’d gone to university and trained to be a nurse, something I had always wanted to do - it meant so much and I felt a real sense of pride every time I put on my uniform to go to work. I had achieved one of my life ambitions.

I suppose you could say I felt fairly settled. I certainly didn’t think there would be any more babies for me but we were both really happy that I was pregnant, we were so excited. My youngest son was overjoyed, he got out the Argos catalogue immediately and started making lists of everything we would need. My eldest son was not so pleased, I suppose when you are 15 years old there is something quite disgusting about the thought of your parents indulging in the unmentionable!!

Everyone was so surprised when I told them I was going to have another baby, but they were really pleased. The new baby was due 10 th May 2004 . Apart from some nausea in the early weeks which disappeared by week 11, my pregnancy appeared to be progressing well. I had the 12 week ultrasound scan showing a lovely little heartbeat and the nucal translucency test, everything appeared normal. The calculation based on my age together with the result of the N T test gave a 1 in 620 chance of me having a baby with Downs syndrome. Based on these figures, no further testing was advised. I didn’t want to have an amniocentesis done anyway as I had decided that whatever the outcome, I would continue with this pregnancy.

We had spent a long weekend in Brecon early in December, a place very dear to my heart. It is a beautiful place so peaceful and relaxing, I have always loved visiting and staying there. We had seen a pushchair while walking around the town, and put a deposit on it in preparation for our forthcoming baby. We were feeling very excited and optimistic. I suppose after having two normal pregnancies and deliveries resulting in two healthy babies, I had no reason to expect things to turn out any different this time………

My twenty week ultrasound scan was booked in between Christmas and New year of 2003 at the hospital where I worked as a staff nurse. We had decided that we didn’t want to know the sex of the baby, preferring to have a surprise when our baby was born. We went in for the scan and it all seemed to take a long time. The radiographer said she couldn’t see the chambers of our babies heart properly and the hands seemed to be in a fixed flexed position. I can remember just as the scan was coming to an end our baby extended its fingers, the radiographer seemed relieved to have seen that. We were told not to worry as this was quite common at this stage and could be due to the position of our baby. The scan would be repeated in a weeks time.

I wasn’t really overly worried at this time, thinking everything would be OK at the repeat scan. It was at the repeat scan we learned that our baby had serious problems. Our baby had two holes in the heart and both hands were in the fixed flexed position. I asked the radiographer the sex of the baby, now everything had changed, I couldn’t wait any longer to find out about my baby. The tears were rolling into my hair and my body was shaking with my sobs. We were having a baby girl.

We were shown into the consultants room where they talked about chromosomal abnormalities and having an amniocentesis to determine if this was the case. About terminating the pregnancy and how, if our baby had a chromosomal disorder it might make the decision to have a termination easier!!! I just sat there thinking SLOW DOWN. An hour earlier I had been looking forward to having a healthy baby. Now they were talking about heart defects, amniocentesis, genetic conditions and terminating my pregnancy. I couldn’t get out of the room quickly enough, my notes were written up as I waited in the corridor. We were booked an appointment at the University Hospital of Wales to see a paediatric cardiology consultant and an obstetric consultant specialising in fetal medicine.

We got outside the hospital and I remember us just hugging each other in the car park. A baby girl, a baby girl….My husband was crying so much but I felt totally numb, as if it was all happening to someone else, almost as if I was an outsider looking in, this COULD NOT be happening. We didn’t think things could get any worse…..

I don’t remember much about the next few days, suppose they past in a bit of a blur. We told our families that our baby was a little girl and that she had serious heart problems, they were shocked, there was very little anyone could say that could make me feel any better.

We travelled up to the University Hospital on a Thursday morning. As we parked the car in the multi-storey car park and got out to walk into the hospital, I received a text message from my sister-in-law saying ‘thinking of you’ I think that gave me the strength to carry on walking into the hospital. As we walked through the corridors I prayed everything would be OK.

We found our way to the ante-natal clinic, we had been told they would be expecting us. Firstly I had to go for an ultrasound in the radiology department. The radiographer was quite brusque and was reluctant to answer any of my questions, she called in the consultant radiologist. He told us that the baby did indeed have a heart defect and that he thought it due to Edwards syndrome. I repeated ‘Edwards syndrome, what is that‘, I’d never heard of it. He said he would take us into a room and give us an explanation.

My baby had a complete AV septal defect of her heart. This means there was a hole between the two atria and another between the two ventricles and instead of a tricuspid and bicuspid valve, there was only one common valve. I asked if the heart condition could be fixed, he said that it was major surgery but yes it was possible to fix. So we still had hope.

The radiologist then proceeded to tell us that Edwards syndrome is a lethal condition caused by the baby having an extra chromosome 18. He said that 90% of babies with this condition die before their first birthday. He said my baby would die before she was born, while being born or soon after her birth. He told us that only an amniocentesis could confirm this, but with the heart defect and fixed flexed hands it was highly suggestive of Edwards syndrome. I can remember asking to use the toilet and people touching my arm and being led back through the corridors to the ante natal clinic feeling again, just numb. It just kept on getting worse, I couldn’t take it all in.

We went back to the antenatal clinic and just sat in a corner, I wanted to be as far away from the other mothers and the pictures of healthy, smiling babies which covered the walls as possible. They seemed to mock me saying ‘look at what you won’t get’ The radio was on and the song ‘Just shut up, shut up’ was playing and that’s exactly how I felt. I didn’t want to hear anymore. I felt utter despair.

We saw a paediatric cardiology liaison nurse and she explained what to expect when we saw the cardiologist. We also had to answer lots of questions, I don’t remember about what. All I could think of was, my God I’m nearly twenty two weeks pregnant and I have been feeling this precious little girl move around inside me for the past five weeks. PLEASE could my baby just have a heart defect or even Downs syndrome - what an awful thing to think under normal circumstances - but compared to Edwards syndrome, I would have welcomed these other conditions. At least it would have meant my baby stood a chance of surviving. You learn not to ask for much when faced with such completely devastating news.

We met the paediatric cardiologist, he was a really nice man. He explained that our babies heart condition was operable, but if Edwards Syndrome was confirmed, then no surgery would be offered.

I hadn’t intended to have an amniocentesis performed but I was so upset I asked to have it done there and then. I needed to know what I was up against. To be able to make the right choices and decisions regarding my baby. The amniocentesis was done right away, it didn’t hurt at all, my hubby hates needles and I was more concerned he look away so that he wouldn’t faint!!

When we left the hospital, I remember feeling as if I’d fought nine rounds in a boxing ring. I felt battered emotionally and physically. How much worse could things get? The next few days went by in a blur. I think we had to wait about three days for the preliminary results of the amnio to come back.

It was eleven o’clock in the morning when I got the phone call from the midwife telling me that ‘its not good news’ I replied ‘It’s Edwards syndrome, isn’t it? the midwife said ‘yes’. I then learned that she had rung my husband first, so he already knew, I still think I should have been told first. I then rung my husband and said ’you already know don’t you, he said ‘yes’. I can’t remember what was said after that. I know he came home but anything else, I just can’t remember.

The midwife wanted us to go to the hospital to meet the consultant obstetrician by one o’clock . We drove to the hospital, to the antenatal clinic, the midwife had said she would meet us outside, but she wasn’t there, so we had to go into the clinic. We were ushered into a room and there she explained what options I had. Details of how a termination would happen- that I would have to take a pill to ‘shut down’ the placenta. I asked at what point my precious baby would die - she explained as I was over twenty two weeks into my pregnancy, my baby would be injected into her heart with potassium to stop her heartbeat. That’s when I broke down, I was absolutely horrified. I pushed my husband away saying, I AM NOT DOING THAT. I knew there and then that I would continue with my pregnancy.

The midwife then took us to the outpatients department to speak to the consultant. I asked about what I had just been told and the consultant said ‘If this is the route you are thinking of taking, it is better it is over with quickly, you have to consider the staff on the ward as the baby could be born alive’. I couldn’t believe what I was hearing. I had just been given the most devastating news I had ever heard and I was being told that I should think of the nursing staff. I said I couldn’t make a decision right there, that I wanted to wait for the full results of the amniocentesis, which would take about two weeks. The consultant then said ‘you know this kid has all these problems, are you telling me that this pregnancy is very precious to you? Again I thought, am I hearing right - well, YES actually, my pregnancy is more special than ever now. I had been feeling my baby kick inside me for five weeks, I loved her and just couldn’t do what I felt they expected me to do. I felt that in the two hours I had known my precious baby had T18, the consultant expected me to have made the decision to terminate. She couldn’t have been more off the mark. I requested that the rest of my care be carried out at a different hospital and a new consultant, which was agreed. I couldn’t bear to be under the care of that consultant any longer.

I felt so strongly, I would have continued with my pregnancy totally alone if I had to luckily my husband supported my decision 100%. I remember sitting in the bathroom (what a silly place to be) and telling my 13 year old son what we had heard that day. We all decided that we would give our precious baby girl the chance of life. We hoped that we would get the chance to meet her, and spend some time with her, even five minutes would make everything worthwhile.

I was always completely open with my two boys about everything that was happening regarding our baby. My eldest son who was 16 at the time, did not want the involvement, I know it was his way of coping. My youngest son wanted to be as involved as possible. I let them take the lead and told them whatever they did or didn’t want to do or feel was absolutely fine. It’s something I told them often over the coming months - I still say it to them today.

We were referred to a genetics counsellor. We gave a family history and from the results of this and the amniocentesis , were told that our babies T18 did not appear to be hereditary, but purely a ‘fluke’ - I hate that word. I thought at the time, after all the pessimistic opinions of the doctors, that it would be better for my baby if she died while still inside me. That way, she would not suffer - my greatest wish was that she would not suffer. As my pregnancy progressed I later came to change my mind and I wanted more than anything to meet my baby girl alive.

We decided to call our precious baby Sophie Elizabeth. My pregnancy continued smoothly, I felt such relief once I had decided to continue with my pregnancy and everyone knew my decision. Many people were surprised when I told them I would carry my baby full term, I could see it in their eyes. Some people even decided to voice their opinions, as if I’d be interested in what they had to say. These people couldn’t even begin to imagine what we were going through or the decisions we had had to make.

My physical condition was excellent, I exercised every day, my blood pressure and weight gain were all within normal limits. For a while I decided that I didn’t want any further ultrasound scans. I later decided I did want more scans, as this might be the only chance of seeing my precious baby Sophie alive.

We carried on, and I did manage to enjoy my pregnancy. I gave up work, wanting to remember every little kick and movement. This time was so special - our baby was telling us not to give up on her so soon - I now know how hard she would fight to stay with us. Not many people mentioned my growing bump, almost as if they were scared I’d get upset. Only one friend ,when she visited used to put her hand to my bump and say ‘well, look at you getting so big’. That meant the world to me, that someone acknowledged Sophie was real.

My care continued in a University Hospital some thirty five miles away from my home. I was told that both my baby and myself would be treated with the same respect as any other mother and baby. I liked that thought. I went for regular ultrasound scans and the radiographer I had met on my first visit to the hospital turned out to be the best. She took some lovely scan pictures of my beautiful baby girl. In one picture, we were able to see all her beautiful facial features they even offered to get them framed for me. I got to look forward to seeing that radiographer.

When I was thirty eight weeks pregnant my consultant casually mentioned that my babies heartbeat would not be monitored during labour. I thought, WHAT!! Whatever happened to us being treated with the same respect as any other mother and baby. The consultant went on to explain that as babies with T18 are so frail and tend show signs of distress during labour, we wouldn’t want to see that on the monitor. She continued that I wouldn’t be given a caesarean if this happened as my babies chance of survival was so low. She said they would ‘listen in’ periodically to see if there was still a heartbeat. Did they seriously think that I had continued to carry my baby girl for all this time, only to lose her during labour. I don’t think so. I wanted my babies heart rate monitored continuously and if she showed signs of distress, to have a caesarean immediately. If this meant I would get even a minute with her alive, it would have all been worth it. I had to be counselled by a different consultant before they would agree to my demand. I didn’t sleep for two nights worrying about this. I told my consultant that they would most likely forget about me as soon as I walked out of the door. I have to live with the decisions I have made for the rest of my life. I later thanked the consultant for backing my decision. I came to realise that I didn’t have to accept what the doctors told me and that I did have rights which enabled me to challenge any decisions I didn’t agree with. I also made a care plan detailing all my wishes. The care plan was stapled to the front of my notes.

I was ten days over my due date when it was decided that I would be induced. I knew that being induced could cause my baby to show signs of distress but if she stayed inside me for much longer would my placenta start to become less efficient. It was like being in between a rock and a hard place - there were no easy answers. I was admitted into the hospital and it took five days before I would meet my baby girl Sophie. We were given a private room and my hubby was allowed to stay with me the whole time. We listened to the radio and the words of one song called If Your Not the One by Daniel Beddingfield meant so much, the words are very poignant. I still cry when I hear that song. I heard it today and it made me cry.

As I was taken to the labour room after my membranes had been ruptured I remember hearing a baby cry. I told the midwife what a wonderful sound that was and I only hoped I would get to hear that sound from my own baby. The consultant who was on call came in and said he was aware of my wishes and was going to support my decision.

Sophie tolerated labour amazingly well, she did start to struggle a bit towards the end, I was having some difficulty and had been pushing for two hours. That’s when it was decided Sophie would be born by Ventouse extraction. Sophie was born and she as placed onto my stomach. I thought she was dead. She was blue, not breathing and quite still. I asked "is she dead" the midwife asked if I wanted the paediatric doctor to take a look at Sophie. I said that I did, so they took her and gave her some oxygen. Sophie was ambu-bagged for one minute. I couldn’t see what was happening at this stage. The doctors back was facing me, blocking my view of Sophie. I could see the look of concern on my husbands face, then I saw him break into a smile. That’s when I knew Sophie was still alive. My husband brought her over to me and placed her in my arms. She looked up at me with huge midnight blue eyes and I thought my heart would burst. I asked when Sophie would need to be taken into the special care unit. The doctor said what for, she is breathing spontaneously and is pink, there is no need for her to go to special care!!!!!! So Sophie stayed with me the whole time, sleeping in her little crib, just like my pervious two healthy babies had done. Sophie weighed 5lb 11.5oz and was 18 inches long. She had a mop of darkest brown hair and everything about her was just so cute.

My youngest son and sister were waiting in a room nearby. They both came in and we were all so emotional - we couldn’t take our eyes away from Sophie, she was just so beautiful. The staff were brilliant, they gave us a room and both my husband and son stayed with us that night. My husband phoned my eldest son to tell him of Sophie’s birth, he wanted to see her as soon as he could.

I wanted to breast feed Sophie but she didn’t seem interested. In the middle of the night a midwife came from the special care baby unit and passed a naso gastric tube into Sophie’s stomach. She hated having the tube passed, but she did take her first feed and tolerated it well. The echocardiogram was repeated and Sophie’s heart defect was confirmed. Sophie had a broken heart and so did I.

My eldest son met his baby sister the next morning. Talk about love at first sight. He took one look at her and I saw him just melt - I’ve never seen a teenage boy so love struck. He said, "she has got my nose, how could I not love her"?

We were discharged home on day three after Sophie’s birth. It was Spring Bank holiday that weekend and they wanted to transfer us to a hospital nearer home until after the weekend. I felt so dejected on hearing this news, I just wanted to go home. I was taking care of all Sophie’s needs, her health wasn’t going to get any better than it was at that point, so why stay in hospital any longer? I spoke to the nurses and doctors and told them that I appreciated all they had done for us, but I wanted to take Sophie home and start building some real family memories. I told them that I was going home the following day and that I intended to take Sophie with me. After that, our discharge was planned for the following day.

The day before we went home the neonatologist came to see us. My husband wasn’t with us as he had gone to buy a car seat for Sophie to travel home. I was told that Sophie wouldn’t be given any antibiotics if she developed an infection. Again I couldn’t believe what I was hearing. A simple infection which could be treated with antibiotics was to be denied her. I told them that I was not happy about this, that if Sophie did develop an infection, then I wanted her treated with antibiotics. My request was agreed to.

We had to call into Mothercare on the way home to buy, amongst other things, a bed for Sophie. I hadn’t dared to hope we would get this far. I chose a pretty moses basket with white broderie anglaise drapes, Sophie was going to look absolutely beautiful sleeping in it - and she did.

What a day, a day we never thought we would see. My youngest son and neighbours were waiting for us when we arrived. There wasn’t a dry eye in the house!! Life continued, Sophie thrived. I had to keep pinching myself to believe this was really happening. Sophie was supposed to die while still inside me, while being born or soon after birth wasn’t she?? Here she was my beautiful baby proving them all wrong.

My two teenage boys were absolutely besotted with Sophie. I’ve never seen teenage boys so mesmerised, they even brought their friends to see Sophie, they were so proud. They helped to care for her, it was a joy for me to sit and watch the way they were with her. Sophie just slotted right into our family, as if she was always meant to be there, she made our family complete.

We took Sophie to visit family, to Brecon to get her pushchair - the shop owner had no idea what a milestone this was for all of us, especially little Sophie. The simple things others take for granted became momentous occasions for us. We took her to see the cows and their calves, the sheep with their lambs. We went for lovely walks in the countryside. We went shopping and out for meals, to the beach where my husband put some sea water onto Sophie’s ear, I told him off at the time but I’m so glad he did it now. We went to a birthday party, we sat outside in our garden in the sunshine, listening to the birds sing, under the shade of our tree. We danced to Bryan Adams - Everything I Do, and we showed her the moon. I just loved having her, she was a joy. We took Sophie to see the bluebells, the foxgloves, the buttercups - we put a buttercup under her chin to ‘see if she liked butter’ - as the story says, if the yellow colour of the buttercup reflects on the skin under the chin, then you like butter - and Sophie did!! We walked at the side of a lake to see her big brother fishing. We had Sophie Christened in the local church, with all our family around us, it was such a lovely day. We had so many wonderful outings but the most special times were the ones we spent at home. I would sit and watch her and marvel at the little miracle laying with her head on my knee. We sat like that for hours some days, only getting up when absolutely necessary. I loved taking Sophie to bed, she slept by my side, my poor husband was relegated to the bottom of the bed - but I know he didn’t mind one bit. Oh how I miss those days and if I had the chance to do it all again - then I would.

An outreach Health Visitor from the hospital visited us at home to offer support. Sophie was weighed every week. We continued to have appointments at the local hospital where she would have her NG tube changed. The first appointment was a week after we were discharged home. We asked about heart surgery. We were told that most parents do not ask for any surgery as babies with T18 are so disabled both physically and mentally. We answered that we were not most parents and it didn’t matter to us if Sophie was disabled, we loved her and would care for her no matter what. We were then told that she would have to weigh at least 4kg before any surgery could take place and that the pressures within her heart would have to be right. They told us to take her home and enjoy what time we had. I don’t think they ever expected to see Sophie again, especially not in a months time when her NG tube was next due to be changed……….

At Sophie’s next hospital appointment, she was five weeks and two days old. She was thriving, gaining weight steadily, as pink as a shrimp and looking really healthy. As we walked into the hospital, the sister from the neonatal ward saw us. She was so pleased that Sophie was doing so well, "now are you going to go for that surgery" she said. Of course we would, it was Sophie’s only real chance, the heart condition Sophie had could only be fixed with surgery, there was no other way.

We saw a paediatric cardiologist who told us that no surgeon would operate on Sophie while she wasn’t showing any clinical signs of heart failure, and that if she had a ‘banding’ operation to reduce the amount of blood flowing to her lungs, it could put extra pressure on her heart valves. We accepted this, I wish now that I had tried harder. We will never know if this was the right decision but it was the decision we made based on what we knew at the time.

The day Sophie went into heart failure, (she was 8 weeks old), the health visitor had examined Sophie at about 12 noon. Her Oxygen saturation level was 99% on air and she was showing absolutely no sign of distress. It was a lovely sunny day and my youngest son and I had taken Sophie into town shopping. She became very unsettled and I couldn’t seem to pacify her. We went to visit my mother and I still couldn’t calm her. I tried to feed her but she would only take 30 mls. I was glad my husband was home when I retuned, I told him how unsettled Sophie had been. We tried to pacify her, putting her into a bath of warm water and this seemed to work for a while, but she would start to cry again as soon as we took her out of the water. My husband wanted to ring the hospital for advice, I told him we couldn’t ring the hospital to say we couldn’t pacify our baby. How I regret that now. I had no idea that Sophie’s heart failure would manifest itself by her crying. Eventually we decided to take Sophie to the hospital, where it we found she was indeed in heart failure. She was taken to the high dependency unit, where she stayed for three nights. Sophie was given oxygen, diuretics and antibiotics as a precaution. After three nights we were transferred to a side room. We asked to speak to the paediatric cardiologist, he came to see Sophie on the ward.

Again we asked about heart surgery. Sophie had an echocardiogram, we were told that she now had primary pulmonary hypertension. That there was no significant backflow of blood from left to right ventricle, so that’s how they diagnosed Sophie with PPH.

They seemed to make just one excuse after another. Firstly we were told Sophie would have to weigh 4kg before any surgery could take place, then as she approached that weight, that no surgeon would operate while she showed no clinical signs of heart failure. Then when Sophie did show signs of heart failure, that she had PPH. I don’t think they ever intended to give Sophie her surgery, even when she did so well. They were blinded by the fact she had T18, they never looked at her as a beautiful baby who they had the power to save. Our wishes regarding heart surgery fell on deaf ears, their minds were already made up right from the time Sophie was diagnosed with T18. I am finding this so hard to accept. A lot of incorrect information is given out to parents by the doctors regarding T18. We were told that babies with T18 cannot tolerate anaesthetic, we now know this is untrue. There were many gaps in the information we were given and many untruths.

Sophie came home on continuous oxygen and a cocktail of diuretics and anti reflux medication. She gradually deteriorated from that point on, she had fought as long as she could. She would have the most distressing times when she would scream and wave her little arms about and we could do nothing to calm her. We were given some sedation to give her when she was unsettled. I hated giving it to her but it was the only way she would settle sometimes.

We decided we would take Sophie to Brecon, she weighed 8lb 2oz at this time. We booked a cottage which was in the most lovely setting, looking up at the Brecon Beacons. With the full support of the hospital off we went, we had such a peaceful, relaxing time. We walked along country lanes, picked hazelnuts from the trees and wild honeysuckle from the hedgerows. We walked by the side of the canal and watched my eldest son fishing. We watched the sheep grazing in the fields.

We had sat outside the cottage on that Thursday, the weather was nice and sunny. I had prayed to God that day and asked for two things. That all of this could be a terrible mistake and that Sophie didn’t have T18 or a heart condition. If this couldn’t be and Sophie had to die then please could her passing be peaceful.

We decided to go for a ride in the car and ended up in a place called Llangynidr. It is such a pretty place, we sat by the side of the canal towpath and we had just fed Sophie, my youngest son was riding his bike along the towpath. There were a few small white cottages the other side of the towpath and a line of Rowan trees with the biggest, brightest orange berries I have ever seen. We had been taking some photos and a video.

I was cuddling Sophie in her new pretty pink blanket we had bought for her the previous Friday. I could feel her breathing getting more shallow. I started to shake and my husband asked if Sophie was alright. I said no I don’t think so. I was trying not to show my son in case Sophie started to struggle, I wanted to protect him from the memory. But Sophie didn’t struggle, she gave a little whimper and I kept telling her how much I loved her, my husband was cuddling us both and my son sat next to us, when Sophie just slipped away. It was so peaceful, there was no one else around, just us four. Sophie was thirteen weeks, three days and twenty one minutes old.

It was a lovely bright sunny day for Sophie’s funeral and the church was full. We chose a pale pink coffin and released three pink balloons, one for every month Sophie was with us. Her flowers were a small hand tied bunch of the prettiest pink and white flowers, just like those a bridesmaid would hold. I had said that if Sophie had been born asleep, I only wanted my husband and sons to be at her funeral. But Sophie had met and touched so many people, I felt I wanted those people there. We had three poems read out and sung the hymns Jesus Wants Me for a Sunbeam and All Things Bright and Beautiful. We had this poem printed and gave a copy to everyone who came to Sophie’s funeral. After her funeral my husband and two sons walked along the cliff top at a beach nearby, the same beach we had taken Sophie.

Our Baby Sophie Elizabeth

We love you to the moon and back

And then way far beyond

Without you here to share our life

It’s hard to carry on

For you our child were life to us

The song within our souls

Without you we are empty

We feel the light has gone

No matter where you are our child

Please know you’ll always be

As close as our next heartbeat

And we’ll love you endlessly

We’ll always be your parents

You’ll always be our child

And in out hearts we’ll keep your love

And we’ll never say goodbye

Its been almost nine months since we lost our beautiful baby Sophie and I don’t know how I got here, I never knew such pain existed. I remember Christmas being such an awful time, I knew it would be hard, but the pain I felt was indescribable. I think this was one of my lowest times. It actually snowed on Christmas Day, something I have never seen before where we live. My youngest son said it was Sophie coming to see us. We had a real angel at the top of our Christmas tree that year, oh how I wish we had a cheap, tacky one just as we had in previous years. It hurt so bad when people sent Christmas cards just wishing us a merry Christmas, no acknowledgement of us having lost our beautiful little Sophie. I have been astounded by the insensitivities of some people, I could go on........

My husband is back at work, my eldest son has started an apprenticeship and my youngest son is back at school. I have been for a job interview and I heard today that I have been offered the job. So you could say that we are surviving but there is little joy in much of anything. Some days I’m starting to feel a little more like my old self, just little glimpses of being able to feel again. I have been told it will take a long time for the pain to heal. I honestly don’t think I will ever be the same again. Thankfully my two boys seem to be coping, they are my priority. I worry about the effect losing Sophie will have on them. They both have good friends, so I think they have helped. My husband and I are closer now, but that hasn't always been the case, it has not been easy at all.

It would have been Sophie’s first birthday on 24th May, we are still heartbroken. I am so so sorry that this had to happen to such a sweet, pure innocent little baby girl, she didn’t deserve any of this. How can such awful things happen to beautiful little babies, I don’t suppose we will ever find the answers.

I have read that I should be grateful for the time I had with Sophie, and I am, oh I really am. We had one wonderful summer together. But if I’m honest I don’t feel lucky at all. I feel cheated, the time I had just wasn’t enough. I knew her, I loved and still love her and I wanted more, much, much more. She should be here with me now. I’m sorry if I sound selfish, particularly to those of you who never got to spend any time at all with your babies, but that is how I feel, just how I feel. I am hurting so much inside.

I love you Sophie Elizabeth so very very much. I miss everything about you. I miss buying pretty pale pink baby girlie clothes and blankets. I miss taking you to bed at night, and saying goodnight beautiful. I miss waking in the morning and seeing your little face next to mine, and saying good morning beautiful. I hate it when I send a birthday card and I can’t write your name alongside ours. I think of you every day, and when I see the bluebells which are in full bloom at the moment, I am reminded of when we took you to see the bluebells, what an amazingly special day that was. I miss feeling your soft downy hair with my lips and oh that smile……….. I have so many precious memories and every one is held wrapped around my heart. I will miss and love you forever Sophie Elizabeth.