Ethan Michael Norman Perry

Ethan Michael Norman Perry died on Saturday 18th August 2007 aged 7 months .
Our baby leaves behind his big brother Ryan aged 7, sisters Meghan aged 6 and Madison aged 2 and special twin sister Erin, Mummy and Daddy grandparents , great grandmothers, uncles and aunties, family and friends who all loved him so much and are so proud to have had him with us for even this short time.


I HAVE FINALLY MANAGED TO FINISH ETHAN'S EULOGY AND I HOPE I HAVE DONE HIM JUSTICE THANK YOU FOR ALL YOUR SUPPORT.

Ethan and his twin sister Erin were born , only 24 weeks in to my pregnancy on the 7th January, he weighed only 1lb 10oz and she only 1lb 8oz ,
When our twins were first born as with most severely premature babies we were told their chances of survival were not great and that we had to just take every day as it comes.
We were told about everything that could go ''wrong '' , but we just had to pray.
Until this time we but me especially had always took for granted that you get pregnant then nine long months later you go to hospital and have your baby or babies and then take them home, just as it was with Ryan Meghan and Madison but it was so different with the twins.
The twins troubles really began on the 5th January when I started having very mild contractions I wouldn't have even worried but later I discovered I was bleeding slightly so went up to Basingstoke hospital just to get checked out. I just thought I'd be told to rest and it would all be fine but after doing some swabs they said I was in proper labour and would need to be transferred to a hospital that could take babies born this premature.

They searched around the nearest hospitals whilst giving me drugs to try and stop the labour and steroids to mature the twins lungs. eventually the very mild contractions stopped and the doctor came to say they had found one intensive care cot in Portsmouth and one in Southampton but they might be able to transfer a baby from Portsmouth back to it's local hospital in Southampton in the morning to make two cots in Portsmouth for our twins but i had to stay pregnant until the the morning at least, as it would increase the twins chances if they were born in the bigger specialist unit , I remember thinking this was all one big false alarm and that I'd probably go over due now because everyone was making a fuss . boy was I WRONG

Luckily for my twins my contractions stopped, the hospitals had a chance to play musical beds and then I got a trip in the back of an ambulance on match day to St Mary's hospital in Portsmouth which just happens to be almost in Fratton park football grounds car park. I remember we were stuck in traffic and the driver asked if I needed to push so he could put blues and twos on and I thought the midwife who was accompanying us was going to punch him shouting that it was not funny but we laughed.

Well once at the hospital all went quiet on the twins front so we watched the match out my labour room window . My husband is a mad Manchester United fan so in our house it's love United hate every other team but he was only happy because Andy Cole scored for Pompey that game and as he made sure everyone knew andy cole used to play for United so that was OK.

Unfortunately later that night the contractions started again and we were moved to the delivery suite. the twins dad is very hospital phobic and doesn't do well in small rooms so when the teams for both babies started arriving as the labour progressed I told him to leave the room when he was ready because there was so many people in the room he couldn't get near me any way.

I always wanted my mum to be with me when I had my babies but fate always made it that so she never made it, all they time i was in labour with the twins , Chrissy my husband kept asking to ring her to let her know what was happening but I refused to let him. Now to most people that will seem strange but my reason was just as I went into labour my mum got a call from her local hospital in Plymouth to say that my lovely grandad Bob Lomax or grandad prickles to my kids was nearing the end of his life and only had hours to live. Obviously I could have asked her to come up and be with me but I couldn't ask her to leave him at this time so I made Chrissy keep my labour a secret, he begged me to let him call her but it was her time to be with her dad. now in hindsight I know grandad refused to give in until everyone knew the twins were born and I regret that she wasn't with me but still glad I didn't take her from him either.

The first of the twins was our Erin. she rushed in to this world at 00.13 in the morning still protected by the sack from my womb landing on the bed in a protective bubble to be whisked off straight away without a sound to the care of her team and I didn't see her till much later . Chrissy was waiting in the corridor and thought as they were still bagging her that it was too late then it took what seemed like forever for my cheeky monkey to make an appearance but it was actually only 34 minutes.

In typical Ethan style he came crashing in to my world with a bang .( he always knew how to make an appearance right from the very start )
The teams managed to get them both ventilated and into transport incubators , and took Erin straight down to NICU, but before they moved Ethan they brought Chrissy back in the room and wheeled Ethan over to the bed so we could get a quick glimpse of him and that was the first time in my 28 years of life that I have ever felt pure fear, unfortunately it wasn't to be the last time we feared for Ethan.

Over the next week Ethan was doing really well with his ventilation and doctors were very pleased but then on day seven they discovered Ethan had had a small bleed on the brain. The doctors said it was small enough to only require monitoring but we wouldn't know if it would have a lasting effect developmentally until later in his life. That was a turning point for Ethan and it was after this time we noticing things starting to go against his favour.

The doctors discovered that both twins had a condition with their heart called a PDA or patent ductus arteriosus which means the duct on the heart that is needed in pregnancy but should shut within the first 24 to 48 hours of life hasn't shut and this if not treated can have a bad effect on the lungs. Erin duct was worst then Ethan's at this point but both twins needed treatment.,which included two levels of drug treatment or failing that surgery to close the duct. the twins both had both levels of drug treatment and which what seemed like a success at this point, we felt things were going OK again. until the dreaded day Eleven . I will always remember this day until I die. It was the day we got the call to rush back to the hospital as Ethan had taken a turn for the worst.

I remember this day the 18th of January 2007 because it was the day before my grandads funeral [who had eventually passed away four days after the twins were born] was due to take place , and i was due to leave the twins to travel to Plymouth to say goodbye to him.

When we arrived at the hospital we were taken in to see Ethan who they explained had become very very poorly over night and they had done lots of tests but unfortunately they showed Ethan had developed an infection and it was in his blood and that the next few hours would be critical, it felt like we had gone back to square one and all his hard work had been for nothing .

About an hour after we arrived at Portsmouth hospital the lead consultant came to see us beside Ethan's incubator to break the news the results were in and it was the dreaded MRSA .

Chrissy and I at first broke down in tears then were so angry HOW HAD HE GOT IT, HE WAS IN A PROTECTIVE BUBBLE IN THE INCUBATOR WHICH MEANT SOMEONE HAD GIVEN IT TO HIM.
Someone had poisoned my precious baby's little body because they hadn't washed their hands properly. Then the hospital staff told us '' the good news is Erin has not got it '' but to us that just meant it was the hospital that gave it to him because if it was Chrissy or i we would have given it to her too.

We noticed straight away how differently he was treated , never having to share a nurse now in case they spread it to other babies but if the government gave one to one funding to these units would he of got it in the first place. The answer to that question is yes he would because I watched the doctor infect him with it and although I have no proof I watched the ward round two days before Ethan tested positive and saw the doctor examine the baby next to Ethan , He did not wash his hands but then went and examined my child.

The baby in the next incubator was being barrier nursed. I later found out from her mum she had MRSA too.

I have to live with it for the rest of my life that I failed Ethan because i never questioned that doctor about not washing his hands between patients before touching my baby.

On the 19th January i sat in the hospital chapel at 12 o clock ( the time of my beloved grandad's funeral ) and prayed with all my might to God not to take my little boy too. he had a big enough fight on his hands without having to battle this to. Chrissy and I refused to tell people straight away about the MRSA because you notice how differently they treated him ,like the were scared to touch this poor tiny tiny baby in case they got it . WE SOON LEARNT PEOPLE ARE VERY IGNORANT ABOUT THIS AND VERY FEW UNDERSTAND THAT WITH GOOD HAND WASHING PRACTICES IT DOESN'T GET PASSED ON. ERIN AND MY OTHER KIDS ARE PROOF OF THAT. BUT SOME PEOPLE WHO KNEW DID TREAT HIM DIFFERENTLY AND THAT HURT .
IT certainly wasn't his fault.

The drugs the hospital gave Ethan luckily managed to clear the MRSA from his blood and after a few days we saw a slight improvement. but then we received the crushing news that the infection had caused the PDA to reopen but only this time it was worse and that if Ethan didn't have surgery in the next few days he would die. So we as his parents said '' fine do what is needed''. It was then we received the blow that he had to be transported to Southampton for the surgery and that it wasn't as clear cut as we thought.

The MRSA had left Ethan so weak , firstly he might not survive the transfer, and if he did the Southampton team and the doctors might say he was too poorly to even operate and that it would just be kinder to let him go. WE HAD TO GIVE HIM THAT CHANCE. so at three and a half weeks old Ethan was separated from Erin and transferred to Southampton by specialist ambulance, just the journey made a big difference and when he got there, he had made a big improvement team stabilised him then at 9.50 on that Friday night the cardiac surgeons operated. thankfully it only took 10 Min's but they were the longest of our lives.

During this time we felt torn between both the twins and our other children but felt we had to focus on Ethan as it might be the only chance we got. On the one occasion we left Ethan to visit Erin the nurses surprised us by taking her out the incubator for our first cuddle. It was wonderful but although Ethan once back in Portsmouth continued to slowly improve it was another four long weeks and lots of nagging the doctors before we finally got our first cuddle with Ethan .
After two collapsed lung set backs on the 13th march 2007 the twins were finally taken one step closer to home and well enough to move to Basingstoke hospital .

All this time Ethan was still testing positive for MRSA on the skin and continued to be barrier nursed so the only skin to skin contact he ever had was from me or his daddy. This made every one of our limited cuddles ever more special but was clearly upsetting for other family members including some of the wonderful hospital staff at all the hospitals he stayed at but i have always been keen to tell people he never got the MRSA at Basingstoke or Southampton and that Basingstoke did every thing possible to rid him of it, but unfortunately it was here to stay .

After arriving at Basingstoke we dared to believe we were over the worst. but Ethan had another routine eye test which showed stage three retinopathy of prematurity, a condition if not treated can lead to blindness so off in an ambulance he went again to Southampton hospital for laser eye surgery to correct his ROP.

The surgery was booked for mid day on Friday and we were told he would be transferred back up to Basingstoke on later that day if all went well. So Chris made the decision not to take another day off work and that I'd travel to Southampton and ring when he was out of surgery.

After having Ethan for 11 and a half weeks we should have know that he liked to make things slightly difficult hence where he earned the nickname CHEEKY MONKEY and that we should not make any plans because Ethan would always have other ideas.

Not content with dislodging his breathing tube during the surgery and causing and hour operation to then take 2 and 1/2 hours he then decided to drop his temperature a lot . And any neonatal doctor will tell you that cold babies don't ventilate well. Southampton hospital transferred him back up to Basingstoke any way and on his return his stability got a lot worst. He was struggling again with his heart rate ,O2 saturation's and blood pressure and although if the op had gone to plan he should have been off the vent within hours it took a very stressful and very scary week to get him off the ventilator.

Ethan suffered a cardiac arrest on the Sunday after the op. I was at home with Ry, Meg and Madison and my mum at the time and Chris was at his aunties house.
I remember the call from staff nurse Ian( a lovely gentle giant who looked completely out of place in a neonatal unit but who is excellent at his job).
Ian said ''hi Marie it's Ian at neonates don't worry he's is OK now but Ethan has had me on my toes this morning.'' Ian had such a lovely way of letting you know things were very serious for a while but he was doing OK for now but i remember him asking where is dad (Chris) and knew things were not right .
This was the nurse who would always say 'we'll' (meaning him and the twins) be fine ,see you when we see you, but today he was asking what time will Chrissy be back and when was I coming up.'' and in my heart I knew we might still loose our CHEEKY MONKEY ,
I told Ian I'd ring Chris and be straight up and was about to say goodbye when Ian said Erin is fine , I had to stop and think " oh" my god I did not even asked is my little girl OK. I felt so guilty for not even given her a second thought and the upsetting thing is that if Ian hadn't have said to me she's fine I would not of asked.
This is when I made myself promise even if Ethan needed the most attention at that particular time never to forget about any of my other kids especially Erin because they all needed us, just sometimes Ethan's need was greater.

During the next few days after lots of praying Ethan started to improve and was eventually taken off the ventilator again and then a few days later I got to feed him his first ever bottle and it was amazing although Ethan was such a piggy it only lasted about a minute. the twins made steady progress from here but at 100 days old we had the bitter sweet moment when we took Erin home but had to leave Ethan behind , he was doing OK but was still not well enough to come home.
It felt so weird to be so happy our little girl had come through so much herself and was coming home but so upsetting to be leaving the hospital without him,

They had been separated before when Ethan had gone for surgery but never longer then 2 days. I remember feeling I should have two of them with me but sometimes I think looking back it was Ethan's way of preparing me for being with Erin without him.

We had Erin home for a whole month before the eye consultant sent her to Southampton neonatal for eye surgery, and in that month the house had to run like clock work.
I started every morning with feeding Erin getting Ry and Meg ready for school dropping them off, and then I'd take Madison to which ever kind friend or family member had offered to have her, then rush up the hospital to see my little man , before collecting kids again cooking tea and fitting in some housework ,and have a cuddle with the other children before going to visit again late in evening .
I remember feeling so tired all the time and some evenings after work Chris felt to tired to visit . But even on the occasions you didn't visit him you couldn't get any rest because we both felt so horrible for not being with him.

On the day of Erin's eye surgery, things didn't go quite to plan. During the operation the doctors discovered that her eyes were a lot worse then they first thought, and she'd need to go to Oxford for more specialist surgery. The only problem with this was Erin had suffered complications and was now extremely poorly.
The doctors were saying to save her eye sight she needed to be transferred as soon as possible to Oxford, but she was to poorly to travel and if they moved her at that time it would have killed her.

All this time we were miles away from Ethan who had been doing so well they were discussing for the first time about letting him home. It was great news except we would not be at home to have him , so the team at Basingstoke postponed his discharge whilst we stayed with Erin . It was like someone had turned the tables on the twins and for a time she was the poorly twin.

Over the next few days Erin's condition improved and the Southampton staff started to arrange her transfer to Oxford, but in typical Ethan style, Ethan decided he wasn't getting enough attention on the unit at Basingstoke so decided to develop a stomach condition called pyloric steno sis.
The condition caused a narrowing in his lower stomach which meant little or no food could pass through. The only cure would be surgery to his stomach as soon as possible.
Meanwhile Erin's doctors came back saying she was being transferred to Oxford Thursday morning and her op would happen later that day but then within hours Ethan's doctor was on the phone saying his op was also to go ahead Thursday morning in Southampton Hospital. I remember screaming down the phone to the poor doctor ' you cannot do this to me' . Both babies had very nearly died the last time they had a general anesthetic and the thought of not being able to be with one or the other was unbearable. Luckily the doctors at Basingstoke neonatal unit who were organising Ethan's op and transfer with Southampton were able to explain our concern and get Ethan's op put back till the Friday.

So Thursday came, Chrissy and I travelled to Oxford to be with Erin for her eye surgery. I remember praying like crazy in the car all the way there that it would go smoothly, as soon as we got to Oxford it was like our luck had changed for the better. Erin's operation went better then we could have ever expected and although we had a parents room booked at the Hospital for the night, Erin was doing so well that we felt brave enough to leave her that night and head home to prepare for Ethan's operation the following day. I remember sitting in the car on the way home crying with relief that Erin was OK but still petrified what the next day would hold for Ethan.

Never let anyone say that the boy was not competitive. It was as if Erin had started the run of good luck and Ethan was not going to let her have all the praise so he too responded better then ever expected during his operation and soon after in recovery managed to get off his oxygen for the first time too.


I felt all my prayers had been answered and within a few hours both babies where reunited back at Basingstoke neonatal unit. I told all the nurses as soon as they were both back there, that this time I'd only be walking out the door with them both together.

On the 11th of June after Ethan had spent 155 days solid in hospital and Erin only 25 days short of his total Chrissy and I proudly walked out of the hospital with both our beautiful twins. It was so emotional you could tell every member of staff in that unit, who had been living the last few months with us ,supporting us, befriending us ,and falling in love with the twins knew this moment was why they did this demanding and stressful job every day. To top things off Ethan was still without his oxygen and and that was something we never thought would happen . nothing was going to spoil this time.


We had four wonderful days like a real family , doing real family things like walking to school and going to the park not to mention all the visitors. But on the fourth day Ethan started to tire and was so obviously not coping as well as he had been, so we rang the hospital and took him up to the children's assessment unit at Basingstoke hospital to get checked out.

Ethan 's oxygen saturations were low again and the doctors had put him back on his oxygen.
The doctors diagnosed bronchilitis with is really common in babies and especially babies with chronic lung disease like Ethan but they don't usually see cases of it until between november and february but in true Ethan style he wasn't going to take any notice of what was the 'usual'.

Luckily Ethan made a good recovery in a few days and we were able to get him home again after a week in hospital but this time he was home on oxygen. It wasn't to much of a shock because we had always been told he'd come home on oxygen so Chrissy and I had already had the training.
It didn't take to much adjusting in to our lives, after all I'd walk on burning coals every minute of every day if you said that was what was needed to have him with us.

Coping with Ethan on oxygen became second nature. it would take a little longer to get anywhere and we'd always have to plan ahead if going anywhere to make sure we had enough transport oxygen. But otherwise it was fine because Ethan always made it fine. He was the happiest baby I have ever met , so content and always smiling.

For six perfect weeks we had our cheeky monkey back home and doing really so well. We started to get in a good routine and mainly enjoy being a family.
I have some brilliant memories of being with all five of the children but sometimes it was so nice when Ryan Meghan and Madison had gone to bed and you could spend time with both Ethan and Erin.

I used to lie them on a mat in the lounge and just watch them touching each other's faces . I know they spent a long time in separate incubators and sometimes in separate hospitals but you could still see their bond . Erin used to always cradle Ethan's face with her tiny hands and it didn't matter how far apart in the cot you put them if you turned your back for a minute they'd manage to get as close to each other as possible. Erin even managed to pull out his breathing tubes on more then one occasion.

Those wonderful six weeks flew by so quickly. I even got brave enough to book the twins and Madisons Christening for the 4th of August thinking there was no stopping us now everything was going so well.

Ethan was still being sick after feeds on several occasions but everyone just put it down to his reflux and as he was still gaining weight it wasn't too much of an issue until the day when he had not long been put down in his cot after his feed for a sleep and I was busy doing usual household things when he turned very pale .
I had friends over at the time and although he hadn't made a noise .
My friend Donna looked over at him and shouted to me that she didn't like the look of him so I came into the lounge where he laid in the travel cot next to Erin to find him obviously pale, as I picked him up he went limp and blue in my arms .
I don't remember being calm but Donna has since told me I walked to the phone with him in my arms and started to speak to someone on the phone as I gentle shock Ethan begging him not to leave me and to' look at mummy baby' .
At this point Donna thought he had died and ushered Madison from the room . She told me after that she didn't want to leave me but couldn't bear for Maddie to have seen him die. After a few seconds but what seemed like forever Ethan took in a large breath and his colour returned slightly but he still remained pale.

The ambulance I had called while on a strange auto pilot arrived in three minutes.
All the time this was going on I managed to turn up his oxygen and make sure he continued to breathe. the ambulance crew quickly assessed Ethan whilst I shouted to Donna to call Chrissy and tell him to meet us at they hospital .
I remember as I was walking out the door with the ambulance saying to Donna 'oh god what about the kids' and her screaming back at me don't worry about about them just go with him I'll get Ry and Meg and I'll take the girls with me .
Normally for me to go any where it would take a load of planning to make sure the other kids but especially Erin would be ok but I just ran out that door without looking back I had to be with Ethan .

We drove out my close with the blues and toos blazing .

Ethan was still pale but since being tranferred to the ambulance, oxygen on the highest level Ethan was allowed he seemed to make a good improvement, when we arrived at A and E they assessed that Ethan was stable and transferred us straight upstairs to charlie's day unit as both twins had continuous open accsess to the children's unit because of their history.

Once we arrived upstairs on charlie's Ethan was seen straightaway by one of the doctors who then called for his consultant to come take a look at Ethan too. By this time our cheeky monkey was feeling so much better that he was smiling at all the nurses and playing with my fingers as I held him.

The Doctors arranged for some tests like an X ray but were sure from my description of what had happened that Ethan had asperated on his feed . This meant that as he laid in the cot he brought up some of his feed but not compleately and then swollowed it back down in to his lungs which had caused his lung to partly collapse again.
I cried when the doctor showed me the Xray which confirmed their diagnosis.
How many more things could his poor little lungs cope with this?

The doctor who had been Ethan's consultant from the day he was transferred to Basingstoke give himself the task of trying to find a vein in Ethan to get a drip started .
The only prpblem was that Ethan had had so many drips and lines in over his life in hospital his little body was full of scars and trying to get a vein was nearly impossible.
Eight attemps later Ethan was screaming needing to be physically held down by me and two nusres and we had to make the decision if the next time failed they would have to use the vein in the top of his skull.
I just had this image of Meg and Ryan screaming if they saw him with tubes in his head that I closed my eyes and prayed please let this work .

I opened them to a Doctor who had missed his last train home 40 mins ago because he wouldn't leave my baby , jumping for joy around the room .
The relief was immense I promised my son on they day I brought him home no more needles and I broken that promise nine times but knew he needed the line for the antibiotics they had to give him but I hated the 'I'm feeling sorry for myself' look my precious baby had in his teary eyes as I cuddled him in begging him to forgive me.

Chrissy soon arrived still wearing his work clothes covered in mud , he just stood in the doorway and said 'oh no please not again.' I told him he was ok so he left to go get washed and sort out the other kids before returning later that night.


The doctors put Ethan on antibiotics and a drip stopping his feeds to give his body the best chance to recover for the first week he was a bit up and down with his oxygen but gradually started to improve a lot.

The Christening was still booked for a weeks time and although I let everyone know including reverand Mary Phillip our local vicar who like all our friends and family had already played big part in his young life,
I refused to cancel the Christening and Ethan's progress continued. for most of the second week too , the Doctors were even saying he would be allowed home for the church service on the sunday but not to the party after.
This didn't matter as long as he was improving.
On the thursday night before the Christening I was busy lying out the twins outfit and Madison's dress.
Ethan had a lovely waist coat, shirt and trouser set and the girls had matching dresses.
I remember thinking sunday was going to be so wonderful finally celebrating with all our loved ones , the twins arrival .
Then the telephone rang and it was the hospital, it was Ethan's nurse ringing to let us know Ethan had been having a tough evening and they had had to go back up on his oxygen a little bit and that the Doctors would have to see how he was the next day to see if he'd be allowed home for the Christening.
So I went to bed that night as I had many nights before unable to sleep with worry.

The following day my friend son arrived to look after the older children whilst I took Erin to the hospital for a photo shoot with the local Newspaper.
The twins auntie Charlie had previously organised and ran a fun day to raise funds for a hot cot for the neonatal unit at Basingstoke hospital. The fun day had been a great success and our family and friends raised £2,300 for the cot and this day was meant to be the hand over and dedication.

I arrived at the hospital early and for the first time even parking was easy so I popped upstairs first to see Ethan before planning to head over to neonates.

As I pressed the enter buzzer on the children's ward I over heard the nurse on the other end shout 'she's here.' The door was released and I entered the ward to one of the consultants running towards me saying she had just been trying to ring me but my phone was off.

In all the time he had been in hospital the only time it was ever off was if I was actually in the hospital buildings itself.
The consultant lead me to a waiting room where she said that in the last few hours Ethan had sufffered a dramatic worsening in his condition.

He had been taken off his nasal cannular for his oxygen and transferred to a headbox but was stiil not coping so they were just about to put him back on to CPAP a machine that stands for continuous postive airway pressure this is something both twins had been on back in the early days after getting off the ventilators.
It was such a huge step backwards.
The Doctor said that they just wanted to get him stable before I could see him but that I should ring Ethan's dad to let him know .
They staff said to use the phone in the waiting area and not to go outside.
At the time I don't think I realised that they were gently trying to let me know how serious things were.

I rang chrissy who left work straight away but it would take him an hour to get to the hospital from work, and then I rang his mum who was at the check out just about to buy the food for the Christening luckily I managed to catch her to cancel everything.

The Doctor came back in the waiting room and said I could come in to see him quickly but that the CPAP was not working. The Head doctor was on the phone to the intensive care team at southampton arranging Ethan's tranfer as I walked back into the room. The consultant was soon off the phone and explaining that as the CPAP was not helping Ethan would now need to be put back on the ventalator to help him. It felt so scary and such a huge step backwards, we were now back to square one.


Ethan spent the first week in Southampton hospital ventilated but stable , it was as we entered the second week we got the devastating news that Ethan had developed the MRSA in the mucus inside his lungs and that his chances of recovery where so slim that they had only giving him a week to live .

The doctors had one last option to try which was some nasty steroids but they did say that there was a chance the steroids would kill him anyway but there was also a slim chance they might help . We had no choice he'd die if he didn't have them and could well die if he did have them but we had to give him that chance.

As I left the hospital this day my parents who had had the older children at there house in Plymouth to get them to return i needed to see my kids . They arrived in four hours which is record time and we took Ry and Meg to visit Ethan , they just believed it was normal visit to their poorly baby brother like they had done so many times before but deep down in my heart it was them i knew that would be the last time they would see him .

When I arrived home that evening to see to the kids I rang our vicar mary and asked her to come to the hospital the next day to baptise Ethan , I finally gave in and said he could be christened on his own without Erin . I hated my decision but needed him baptised . I had always wanted them to be done together but wanted her's to be a celebration as his should have been. But instead we just gathered his god parents and ourselves and kept it very quiet .
The baptism was beautiful and I'm forever indebted to Rev Mary Phillips for all her and love and guidance .

The steriods were started on the Thursday and the doctors said they would know by the monday if the had helped at all . Until this point Ethan 's daddy and I had been travelling back and forth to the hospital but for now on we chose to stay until we either to him home or he left us for good.

By the friday evening it was clear that steriods were not working as they had hoped but the doctors kept saying lets see how he is in a few hours , (I think this was more for Chrissy and I rather then Ethan ) so we went to sleep for a few hours in the parents flat .
In the morning chrissy who has had each of our childrens names tattoed on him , left the hosptial to go find a tattooist . I sat so scared that Ethan would die while Chrissy was gone but Ethan held on for his daddy to return .

Chrissy walked back into the room with kitchen towel stuck to his arm and then he removed it to show an unconscious Ethan .
He said here son your official now, so it's ok if you need to go baby but we want you to stay . Then my man that had always tried to be so strong broke down and cried and told me he felt his grandad's spirit was waiting in the corner since Ethan arrived at southampton . At this point Ethan stopped coping with oxygen sats and his blood pressure, it was like he was telling us he'd had enough so we ask the doctors to stop everything and let our wonderful little boy go to a better place.

I don't remember the technical stuff that happened next but I remember being sat in a chair and handed my beautiful baby boy the way it should have been when he was born , without tubes and wires and alarms .
Ethan smiled at me and his daddy and then died in my arms .

He looked so peaceful .


He fought so hard and so bravely against every infection ,surgery and challenge this life dealt him but in the end his little body just couldn't go through anymore and he passed away peacefully in my arms aged 223 days old .
Erin is doing really well although you can tell she, even at seven months knows he is missing but I promise to always tell her how wonderful her little brother was and how much we love him


We can't reach out to comfort you
Or hold your tiny hand,
The precious dreams we held can't be
Fulfilled the way we planned.

sometimes we say a little prayer in hope,
perhaps we might
have one last chance to tuck you in,
before we say ' goodnight'.

So much we would have shared with you
But as we had to part,
There is just an empty silence,
Echoes in our broken hearts.


born too soon, gone too soon

my love always mummy Marie Perry