THEO'S STORY

The journey with Theo will never stop, not even now that he has gone. Theo has changed our lives for ever…..

Theo made himself known to me as early as 6 weeks. I was hit morning, noon and night with sickness and the only thing to make me feel better was peanut butter sandwiches. I think that would have been Theo's favourite in time.

By the time the 12-week scan had come and gone, I was beginning to feel better and the new arrival in November was now bringing much excitement to the whole of the family.

As our 20-week scan approached I had nerves, but was excited by the fact that I would get to see Theo again. 29^th June 2009 was the day that changed our lives.

I remember that day so clearly. Driving to the hospital. Saying to Dan I just hope all is ok with our baby - as long as we can hear a heart-beat then we are ok.

I remember the sonographer was running late, and my first thought was how young she looked. To begin with all was fine; she moved quickly through views of the brain, spine, limbs. However she spent longer looking at the heart and said she would need to come back to it, as maybe the baby wasn't in a perfect position. She also noted that Theo had an echogenic bowel. This naturally meant nothing to us. After another look at the heart, she turned off the machine and told us that she believed there was a problem with the heart. As she left us to book us for a scan with a consultant, I remember so clearly crying into Dan's arms, knowing that our poor little baby and our dreams of our perfect new family were in tatters.

We left the hospital in a daze and headed to my parents house as they were away at the time. We sat in their garden going through what possibly could be wrong and where we went from here. To be honest we had very little to go on. I remember being far more focused on the echogenic bowl than the heart. I called my parents and tried to explain. If I'm being honest I felt most scared then of having a child with Downs Syndrome.

Looking back now, I realise that my thought­-process for having a child had always been so simple. I just expected that everything would be ok. We would get pregnant, and 9 months later we would have a happy, healthy family. At this stage the prospect of having a child with problems was something I was scared to deal with or even want. I worried about how it would affect my love for the baby, how the baby would cope growing up, how we would cope and how much our life would change.

These all probably sound like selfish thoughts, and yes they were, but I guess I had never experienced the love of a child. I didn't understand that it didn't matter what he or she did or didn't have. This was something that I now realise since having Theo. It doesn't mean you don't feel sad or angry that they have health issues, but you realise that loving a child is unconditional.

Two days later we found ourselves back at Chelsea and Westminster hospital having our scan with the consultant. This was when we realised that Theo had a severe heart condition and that actually the echogenic bowl was the least of our problems. The consultant said that we would need to be referred to a paediatric cardiologist, who would scan Theo again. We could then assess what route we should take with Theo. This was the first time that the option of whether we wanted to carry on with the pregnancy was bought up. I remember feeling relatively calm and didn't cry at this point. Dan was always more emotional while we were in hospital. We had our own natural pattern of getting through this and supporting each other. I could manage to stay strong in hospital while Dan would breakdown. Once we were outside and the enormity of the situation had hit me, I would cry and Dan was strong.

The consultant also talked to us about having an amniotecisis test. I had been nervous of this, due to the chances of miscarriage. We decided to wait until we had seen the cardiologist and get his thoughts. That night I read the consultants notes. He had written that he thought our baby had a Hypoplastic Left Heart. Even though I knew I shouldn't, I decided to look on the internet to see what it meant. As I searched I realised that a Hypoplastic Left Heart was an extremely serious condition and the quality of life (from what I could understand at the time) seemed severely impaired, with many operations and a lifetime of drugs, and then not all children survived! Everything I read made it seem so bleak for our baby. It scared me so much. I couldn't see beyond what felt like a no-hope situation.

The day arrived for the cardiologist scan. We were to be scanned by Dr Piers Daubeney. I remember thinking how nice he seemed in his tweed jacket! He explained that Theo did not have a Hypoplastic Left Heart, but a condition known as 'Pulmonary Atresia with an Intact Ventricular Septum', which resulted after-birth in the blood being unable to be pumped from Theo's heart to his lungs, and thus get oxygen to his head and body. Without intervention this would cause death in a matter of hours after birth.

Strangely at the time this felt like a huge relief! Even though it was a complex condition, Dan and I thought that it was an improvement from our internet searches. Piers started to draw pictures of what a healthy heart looked like, and how it worked, and how this compared to Theo's heart. He took us through the 3 main operations Theo would need to have once he was born and during the early years of his life. At this stage he was confident that if the right ventricle remained a good size then Theo could have a biventricular repair, meaning that all the chambers of the heart would ultimately work relatively normally. However if it didn't develop during the remainder of my pregnancy, and the right ventricule became more musclar and the cavity smaller, then this prognosis would change to Theo only having half a working heart.

The major differences between the two as we saw it was that with a univentricular heart there was a significantly higher chance of needing a heart transplant later in life - a heart with only one pump, instead of standard two just simply wears out over time. It also would mean that he would be on medicine for the rest of his life. Piers also explained that sometimes 'heart children' had other complications, or syndromes and that having an amnio might be a good idea. The process of the amnio itself was actually not as bad as I thought. I think Dan was more scared than I was when he saw the size of the needle! It didn't take too long and I remember thinking that I can't believe that I had managed to have it.

From this point on, we were put in contact with an ante-natal Cardiac Liason Nurse called Mary. Mary will be in my heart forever. She came with us on this journey from the start and is still with us today, she is the most wonderful woman. I call her "My Mary". While we waited for the next more detailed scan which would be in a few days time at the Royal Brompton we talked and cried a lot about we should do. There were many more searches on the internet too!

On the morning of the scan, Dan was quite upbeat. He had confidence that Dr Daubeney was a leading expert in Theo's particular condition and felt that we would be able to cope with Theo's condition. I on the hand couldn't believe that this was going to be ok. I felt that we were just going to find out even worse news and went to the hospital with a feeling of complete dread.

We were met outside the Royal Brompton by "My Mary", which made me realise how serious this all was! I remember thinking that the hospital was so old and scary looking. It was as if we were entering another world, which I didn't want to be part of. Some days I just wished that I could swap places with Dan, just so I could be removed from all this scanning. Next to us in the waiting area were a couple who had travelled 3 hours to London for their appointment, but were told that they couldn't be seen because they had been booked in for the wrong day. I remember both Dan and I feeling like we wanted to offer our appointment up, as we only lived round the corner and could easily come back, but at the same time we needed to know sooner rather than later the full extent of Theo's condition.

The scan and the meeting to follow was awful. The scan, done in silence, seemed to last forever. We were then taken into a side room. A box of tissues sat in the middle of the table - not a good sign! This was where the rollercoaster really gathered momentum and I just wanted to get off! We were told in much more detail about Theo's condition and how if the right ventricle were to stay a relatively good size, as it is now, we could still try for a biventricular repair. However this was far from certain. The meeting then very much started to be about whether or not we wanted to carry on with the pregnancy. At 23 weeks, we still just had time to terminate. Obviously this was not a decision to be made there and then, but it was an option. This felt like the sadest & cruellest choice.

To be honest my initial thought was that I was scared of giving birth. I always have been and always thought that I would have to be hypnotised to do it! But to terminate meant giving birth NOW and at the end of that for our baby to be dead! I knew I was being selfish but part of me just wanted to carry on so I could avoid that. However I knew that before we could make a decision I had to work through this selfish, fearful side, so I could base my decision purely on what was best for Theo.

I have to admit that I didn't feel overly maternal at this point. I was struggling to feel the strong bond that mothers say they have with their baby in the womb. I felt terrible because I couldn't say passionately I wanted to save my baby. The first step I took was to speak to a senior midwife at Chelsea and Westminster Hospital about the termination process. We spoke at length about it and how it would happen, what would happen to Theo after he was born, holding him, pictures, etc. I knew after speaking to Anna that even though I was scared and the process pretty horrific, I would be able to go through with it, if this was the path we choose. I would not be continuing with Theo just because I was scared of having a termination. I was finally at peace with that.

I guess the one question that was haunting us and we so wanted to ask was, "do you worry how long your child will survive for?". We were scared of putting Theo through this all and then losing him when he was older. I was terrified that Theo would grow up being angry with us for bringing him into this world when he would have a restricted life and endure so much pain. I didn't know if I could bare to let him go through this. But on the other side of things, I knew that Theo was growing inside me and as long as I could look after him and give him all our love then he would be happy.

These questions seem selfish questions to ask, but we had to be realistic. We also realised that we were still young and we hoped we might still have more children if we chose to terminate. On the day that I found out the results of our amnio's we were at my sister's house. Dan came back from work and told me he had spoken to Chelsea and Westminster and that our amnio's were clear. It should have been wonderful news, however Dan and I had separately both come to the same decision that day - we didn't feel able to continue with the pregnancy.

We both felt it was too much to put us and Theo through and this way we could try again for a healthy baby in time. Just as we had come to decision we spoke again to Dr Daubeney. It was 9:30pm and we were so grateful that he made himself available for a phone call so late.

The phone call flipped us upside down. Dr Daubeney felt that it was possible that the right ventricle would remain a reasonable size and consequently there was a good chance that Theo could have operations with a view to achieving a biventricular working heart. This still meant limitations on his life - drugs, no competitive sport, etc, etc - but to us at least it seemed as close to 'normal' as Theo was going to get. Dr Daubeney made it very clear there was no guarantee that this would be possible - nothing is until a baby is born and further scans are done - but that phone call breathed new positivity into us, and potentially Theo's quality of life. So suddenly we were back to being torn with what to do and it was all so painful having to be in this situation. If I'm being honest, I tried to become less and less connected with Theo. I was just a person with a bump. I look back now and I so wish more than anything that I never had these thoughts, that I was like other mothers who sung and spoke to her unborn baby, who felt like they were hugging them non-stop, because If I could do it all again with Theo, I would tell him how much I loved him everyday.

There were a couple of turning points that helped us reach our decision to give Theo his chance at life. I realised that we were lucky to be given a choice, that there was a chance for Theo and people were telling us that there were ways to help him have a good quality of life. I realised that some people are not given a choice, are told termination is the only option, or are never able to have kids. I realise that I wanted to give Theo, my son, the chance he deserved.

The other turning point for both Dan and I was when one of our best friends met a lady who happened to have a little boy with the same condition as Theo. It was as if fate had lead them to her that day, as meeting them was instrumental in our decision to bring Theo into this world. They invited us round to their home for brunch one Sunday morning and there we found the most wonderful family and the most gorgeous little boy Luke, aged 6, and his twin sister Ruby. Luke was so full of life, chatting away, running around and playing on his scooter. His mum and dad, Karen and John welcomed us into their home, talked us through their experiences and showed us pictures of what they and their little boy went through. What struck us both was what a fabulous, happy family they were, and how even after major operations, Luke had bounced back quickly. Looking at him that day you would never have known that he had a heart condition. It was so wonderful to see first-hand and we can never thank Karen & John enough for letting us into their lives and giving Dan and I the belief that we could do it and so could Theo, and we were going to give him a chance.

The decision made I slowly I began to relax a little into my pregnancy. The rollercoaster had flattened out. We had done as much research as we could on the condition and I had joined an online support group, Heartline. I was able to feel safe there, writing about my fears and worries, and getting support and advice from other mums who had children with heart conditions. I was so touched by the amount of people who would write back to me in the forums, it helped me get through some very tough dark days when I just wanted to cry and cry, and to be honest with you I did just that, and wondered what I had done wrong and why this was happening to us.

We went to our next scan desperately hoping that Theo's condition had not worsened. However it was not to be. His right ventricle had got much smaller. The doctors were surprised by how quickly this had happened and so we were back to feeling desperately sad and scared again. At this stage of the pregnancy we had no option but to carry on, and so we did our best to keep calm and focused. While Theo was in me he was safe and happy and I just needed to keep him like this until he was due in November.

This scan actually turned out to be relatively quick this time. They thought that nothing had changed and so Theo was most likely to end-up with a single ventricle heart. By now we were fairly immune to these hospital visits. The language they spoke to us was not alien and we felt less terrified by what we were hearing. We had grown up and learnt so much over the past 12 weeks that we felt that we were ready to take on this battle.

In the lead up to the birth I still wasn't ready to buy loads of clothes or nappies etc. Firstly I knew that Theo wouldn't need them while he was in hospital, but also I was so terrified that we would never bring him home. However we did buy a pram and car seat, etc. It felt ok doing that as they were big and bulky and sort of felt generic to any baby. But for me buying baby clothes became personal and I was scared of getting too personal and involved in case Theo never came home.

At 12.55pm on 20th November, my gorgeous little Theo came into the world looking rather grey and blue, with a cone shaped head and a very long body. Five paediatricians were waiting at the end of the bed for him to come out to whisk him away to the neonatal ward. The midwife gave him to me for a few seconds and then Dan handed him over to them. I remember being in shock. The enormity of giving birth had knocked me sideways. I didn't really know how I felt about anything at that point. I just remember feeling shaky and not with it at all. As I write this though, how I wish I could go back to that day again and relive the moment Theo was born. My heart aches with every word I write knowing that he has now gone.

My wonderful Dan took over at this point and went to check that Theo was stable in the neo-natal ward at Cheslea and Westminster. As planned they had administered the drug prostaglandin, which kept a duct in his arteries open to allow some blood to get to the lungs. Once I was ready I was allowed to go and see Theo. There he was this tiny little person in an incubator. Again its only now as I write this that I realise how much I would do anything now to have cuddled him at that point. He looked so small and vulnerable. At the time I have to admit, my feelings were not as strong as this. The bond hadn't immediately happened. I felt like I was looking through a glass box at my son but he wasn't really mine. I was just a visitor looking in on the outside. Our midwife bought me back to the postnatal unit without Theo, whilst Dan travelled with Theo in the Childrens' CAT ambulance to the Royal Brompton Hospital. Theo was going to the Paediatric Intensive Care Unit ('PICU') as planned.

At the Royal Brompton there are rooms for parents to sleep so we went to try and rest while Theo was having his operation. Two hours later he was back. This was the first time I had really taken in that this was my son and how we were now dealing with the situation which we had been preparing ourselves for the last 5 months. There were tubes everywhere and he looked so swollen, especially his eyes. He just lay there so helpless. Again at the time it wasn't as hard to deal with as it is now thinking back about it. I guess at the time I knew nothing else, we had not seen him in any other way apart from with tubes etc. He was our son and we had prepared ourselves that this was what was going to happen and so we were ready for it. We didn't expect to lose him, this was just a place for him to get better.

We were called in to a meeting room with Dr Daubeney, Dr Uemura the Surgeon and Natasha, the paediatric intensive care nurse looking after Theo. This was to be THE defining, heartbreaking moment. Piers slowly started to draw a picture of what a normal heart should look like and how it should work and then he started to draw what he found with Theo's heart. Slowly he began to tell us that Theo's Pulmonary Artery had not grown at all. It was only 1.5mm in diameter. This meant that the operations they had planned to do were virtually impossible. His right ventricle was still undeveloped and he had also grown MAPCAs. He started to tell us that he was aware of only one other case like Theo out 182 that had been studied. This boy didn't have an operation either, but managed to live until the age of 3 with a relatively poor quality of life. Our only real option was palliative care - making sure Theo didn't suffer before he passed away.

We weren't expected to make a decision then and they all left us in this room while Dan and I tried to comprehend what he had just heard. We could fight no more and neither could Theo. We both knew in our hearts that we could not put Theo through any unnecessary pain or suffering for operations that had virtually no chance of success. From that moment we knew we had lost our son. We now had two days with Theo before we had to give our decision to Piers and the team.

I found the first 24 hours very hard to be with Theo. I was still in shock from the birth and from hearing the news from Piers and I was scared. Whilst Dan seemed to want to spend as much time as possible sitting with Theo, I found it hard to do. I was so scared of bonding, of falling in love with him as I knew I was going to loose him. Again as I write this I wish I had not felt that at the time, as now I feel I missed too many moments taking in that love for him and touching and holding him. Dan and I sat that afternoon in the park next to the hospital in tears knowing that there was no other choice for Theo's future. We also had to tell our family and friends of the decision that we were going to have to take with Theo. This was another heart-wrenching moment and so painful. I couldn't bare hearing my family so upset and pained by it all. It was also very hard because Dan and I wanted to keep Theo to ourselves. We had been on this journey together and we didn't want to let anyone else near Theo, we wanted it just to be us right up until the end. Neither Dan and I could deal with anyone else's grief apart from our own. So selfishly we shut everyone out and we said we just wanted to say goodbye to Theo on our own.

It was that night that a wave of pure love came over me for Theo. The barriers came down and I unlocked the mummy inside of me. Dan was exhausted and went to sleep but I felt I wanted to stay up with Theo longer and have my own time with him. There was a new nurse on that evening called Justine. She was so wonderful, caring and like a ray of sunshine for me. She encouraged me to touch, wash and care for Theo as much as I could as if he was at home with me. So that night we moisturised his little body. His skin was so dry from being over due, so we oiled him up! And because he would feel the cold I had bought in a pair of very smart Ralph Lauren socks that Grandpa had given him and we popped them on his feet, with his favourite bear Basil cuddled up to him with the blanket that I had put on me while I was pregnant so he could smell me on him. I took photo's of him and remember laughing and smiling with him for the first time ever and feeling like he was my son. I came bounding upstairs to find Dan and was so excited to show pictures of Theo to him and how happy I was to have had that time with him.

Monday arrived. The cardiologist, surgeons and intensive care consultants had their meeting, where they apparently talked about Theo's condition at great length in an attempt to find a course of action. At about 11am, we were called in to see Piers and Meredith. It was then having been told that their initial assessment remained the same, that we confirmed that we would like Theo to come off the ventilator and be allowed to pass away peacefully without any further intervention, other than to keep him calm. We asked them how long it would take for him to pass away. Piers explained that it was difficult to tell but considering the severity of Theo's condition, the most likely scenario was hours not days. We were actually relieved to hear this as we didn't think we could cope with having to watch Theo pass away over weeks or months! The hospital were very caring. We were not rushed into removing the ventilator. We could choose when to do this.

We had organised for Theo to be christened that evening. Wendy Izod, a very close family friend and vicar, who baptised me, and married Dan and I would do the service. It was incredibly special for Wendy to baptise Theo. It was just the three of us and Natasha. The baptism was so peaceful and perfect. My mum had sent up the christening gown that I was baptised in, and also her grandma and great grandma too. The nurses carefully put Theo into gown, not an easy job as it is rather long and the tubes had to be worked around it. However they did it with such ease and made the experience so beautiful for us all. 

That night after the christening, Dan and I went out for supper across the road. It felt strange doing it, leaving Theo but the nurses were so wonderful and it was something that we had to do. We had to every so often step away briefly, re-charge the batteries and eat something other than snicker bars!! We also celebrated the wonderful little boy we had been given and talked about our future without him and wondered if we would survive and get through it. Those moments for me were equally as special and treasured as the moments we had with Theo. Only Dan and I would ever be able to share and really understand the intensity, emotions and the journey that we were on, nothing else mattered to me apart from Theo and Dan.

We decided we would take the ventilator out on Tuesday evening. Natasha suggested we do some hand and foot prints beforehand. It was so lovely to do and a piece of Theo we can treasure. Tuesday arrived and we knew it was important that Theo met our family. We were so proud of him and we wanted our family to see what we had made! and how special and wonderful he was. The PICU made an except and allowed our immediate families to visit. So that afternoon Dan's mum came to see him, followed by my parents and then my brother, sister and sister in law. It must have been so hard for them. Dan and I had almost become numb to the tubes and what we were going through. But I know for everyone else it was just so difficult to see. However it meant and always will mean the world to me that they came, they didn't cry and were strong around him. It helped us to channel our energy into being strong for Theo too.

So night time arrived and we are now in our own cubicle with Theo. They bought in camp beds for us to sleep on so we could be with Theo 24/7 and slowly they turned off the ventilator but it was wonderful seeing his little face again without all the tubes. They only left the oxygen canular and feeding tube. This was going to be the first time that I could properly hold Theo next to my skin. It was something that I had been longing to do for. They put his little bare body down the front of my top so we were skin to skin. It was the most incredible and amazing moment of my life. It was like we had literally become one, for this precious moment. Theo felt like he belonged to me, like he knew he was safe and warm and every so often he would just make little noises as if to say he was happy. There will never be enough words to describe that moment. When I close my eyes I can almost feel it all over again, and I can't tell you how much I yearn and ache to have that moment again with Theo, my precious little monkey, my monkey chops. Theo lay next to us in bed that night. He would cry at times and I would get up and give him a cuddle and just hold him and for moments I felt like I was just like any other mum getting up in the middle of the night to look after their baby. How I wish it could have stayed that way!

Morning arrived and little Theo was still with us and continued to keep at a steady pace with his oxygen saturations levels, they were in the mid 60's at this point. A healthy person's Oxygen Saturations would be at 100%. However, 60's could have been a lot worse for little Theo. By the time the afternoon came we were bathing him and generally just enjoying being with. The room was never filled with sadness while we were there even though the outcome was going to be so sad. Tasha, Nicky and Justine, our amazing nurses helped not only Theo but Dan and I too. They gently kept us going when they knew we were breaking inside, they held us when we were falling and kept us smiling when we they sensed we needed and wanted to smile and be happy. They made sure we enjoyed our time with Theo in PICU.

That afternoon the doctors came into to tell us that actually Theo was doing better than everyone thought after coming off the ventilator and as his saturation levels were in the 60's we could actually take him home. This did not mean that he was going to now live forever. He explained that we might have Theo for another day, week, month or year. It really was up to Theo, but basically we didn't need to stay in hospital to watch him pass away. This information knocked Dan literally off his feet. For a while I felt so happy. For a moment I think I thought it meant that everything was going to be ok with Theo. However Dan was more realistic and knew that this could get even harder for us. We were taking Theo home to die and we were going to fall more and more in love with him each day and saying goodbye to him was going to be so painful.

Before leaving a care plan had to be put in place for Theo at home. It was now Wednesday and they thought we might take him home at the end of the week. We were introduced to the palliative care team. We discussed the options of bringing Theo home to care for him under the care of Caroline Rose, or taking him to Chase Kids Hospice in Guildford where we would have 24/7 care for him. We decided to go and visit the hospice on the Saturday. I remember that day as being so tough. I was all over the place with my emotions. I just didn't want to be going there at all. However the hospice was a wonderful place and so caring and the team we met were so welcoming and warm. However I just knew that I didn't want to bring Theo here. To me Theo on the outside seemed well and I so wanted to care for him at home. I wanted to do the things that I had always dreamt of doing with my own son, like taking him for a walk round the park or visiting friends with other children. We had built our home for Theo and I wanted him to be part of our new home. I didn't want our home to never be touched by Theo's presence. I also didn't want to move to another place, I needed my own bed, my own home. I needed to feel a mummy with Theo, and a wife to Dan in our home. If the hospital were ok we bought him home then that is what I was going to do. I remember driving back from the hospice, crying. We decided to nip home to change clothes before going back to see Theo. I crawled into bed for an hour and just slept and I cried some more. I was exhausted and just wanted this all to be ok. At the same time we had a knock on the door from the man who was delivering oxygen for Theo. I remember feeling that I just wanted to run away from it all and take Theo with me. I didn't want to lose Theo. I couldn't bare the thought of that.

Over that weekend while Theo was in hospital, the doctors slowly started to reduce the 24 hour care that we had originally had. They wanted us to be parents to Theo without their help and they encouraged us to do more with Theo every day as he was now not connected to any machines at all. Theo's first outing was on the Kings Road. Dan and I wrapped him up warm with Matt the nurse following us just incase anything went wrong. It was a very quick first expedition up the road. I felt rather anxious by it, but our lovely little Theo just took it all in and was perfect, his lips didn't even turn blue in the cold! The next outing was completely on our own! Down to the café in the Brompton Hospital to meet Theo's godparents and have a tea party. It was such a lovely hour and we felt so proud to be able to show him off to them.

Dan and I were by now certainly ready to bring Theo home. We had lived in his cubicle 24/7 and even though we loved the nurses with all our hearts, we were starting to get cabin fever. I think it was good that we had reached that point ourselves instead of feeling that we had to leave when we weren't ready. Theo was doing so well and I think everyone felt that he would be far better at home now that everything was in place.

Before we bought him home I had to make sure that we had various things at home, all the things that I had not wanted to buy because I was scared of never brining him home I now was doing. I went to Peter Jones and bought a mobile bath and some more baby grows and swaddling blankets and nappies!! I can still picture to this day walking round Peter Jones, thinking how sad this was. I was meant to be excited buying this but infact I was desperately sad, knowing that this was only for short term. I remember standing next to a pregnant lady with her mum and she sounded so excited about buying everything. I felt so sad as I had never had that moment of ever feeling I could buy anything for Theo, let alone feel excited. I feel like I have grieved all the way through my pregnancy, grieving for the loss of a normal pregnancy, a healthy baby, and just feeling happy. I also bumped into the midwife who helped me deliver Theo and having to tell her that we had turned the ventilator off and we didn't know how long we had with him. It just felt so sad delivering this news to someone who was so lovely and had helped bring my son into the world. I also had another amazing midwife who helped deliver Theo and I was so touched when she called up to say how sorry she was about Theo and to see how I was. It was little things like that just touched me beyond belief.

And so the day came to take our lovely son home. I always remember while we were having our heart scans before Theo was born. "My Mary" said to Dan and I, there will be a day when Dan will come in with the car seat so you can take Theo home. There was a point when I never thought that would happen. But that day did arrive and it holds a special place in my heart forever. Theo crossed the threshold into our home.

I remember feeling rather overwhelmed the first day he was home. I was scared we were on our own, I wondered if we really could do this and how we would cope. I think also the hormones were kicking in too! However Dan and I were adamant that we would not be scared, we would enjoy Theo and would make sure that we had fun, were relaxed and happy with him, life would be as normal as we could possibly make it. We made sure Theo experienced Fulham properly after all he was a Fulham boy now! He had a couple of trips to the pub, a walk along the river, Sunday roasts with his friends and girlfriend too! But most of all Theo was cuddled and cuddled by grandparents, aunties and uncles and above all his Mummy and Daddy. Theo had his own special way of being with each of us. For me he would just snuggle up on my chest for hours on end. For Dan it was lying on his back looking up into his daddy face and they would chat away about sport and other things!

Theo gave us two weeks of pure happiness. These home days sort of blend into each other because you don't have the routine of doctors rounds and monitors to watch as you do in hospital. He was the most calm and relaxed baby that we could have asked for. Theo slept well and fed well, to the point that the community nurses took out his feeding tube very soon after he got home. He very rarely cried expect when he had his nappy changed! Theo just let the world carry on around him. I can't deny that even though it was wonderful that Theo was with us still, it also got harder and harder. We fell in love with him more and more and knew one day that we were going to have to say goodbye to him

We always thought that Theo would deteriorate slowly. But Theo decided he wanted to do it his way, he wanted to leave us with a clean nappy, a full tummy of milk and in his home. On 21^st December a few days after we had put the Christmas tree up for him, Theo passed away calmly, quietly and peacefully in our arms with us telling him how much we loved him.

Dearest Theo, my monkey chops…

I miss you each day and my heart aches for you. I long to pick you up and lay you on my chest and cuddle you for hours like we used to do. Those cuddles have soaked into me so it means I can carry you around me with every day and everywhere I go. I am so proud of you Theo, you were brave, strong and courageous and yet you were only with us for 4 weeks. You have enriched our lives and I will follow in your footsteps with this bravery and courage. You have changed me for the better but Theo you gave me the greatest gift in life - being your mummy. Thank you….

I love you Theo the Bear, my beautiful son…..

xxxxxxxxxxx