On March 14th 2014 our beautiful boy fell asleep for the final time in Demelza hospice Eltham at just 5months old 

Our boys story is one I'm still I'm awe of, a true miracle and a fighter to the end. His story is at the bottom 

Iv been blessed with a place in the Virgin London marathon 2016 by Demelza and have pledged £2000... Let's smash that target 

Sherri x

On May 28th 2013, we went for the routine 20 week scan at fanshawe clinic in dagenham, every expectant parent is always excited for this, as were we. We were over the moon when we were told we were having another boy!! Our eldest son Brandon on the other hand was unimpressed - he wanted a sister! after 10 mins or so of prodding, and poking the sonographer said we would have to go for another scan.. we couldn't understand why but she explained there was a bubble 

in our baby's tummy and we needed a 2nd opinion, 'it could be nothing' - another scan was booked for the following day at queens and as we didn't think it was anything serious i arranged to go with my sister and took my son along.

i remember the woman's face in that scan room, two previous miscarriages had taught me that face meant something horrible.

i turned to see the confusion on my sisters face as another woman came in.

we had been told in that room that they could see some bubbles in the tummy and that the heart needed to be checked. another 5mins outside we went into a room that changed my life, our life - forever.

i laid there numb, in silence 5 people looked at a screen, my sister trying to keep Brandon still and quiet all whilst looking just as terrified as i felt - i was told our baby had a large hole through the middle of his heart, making his heart have two chambers instead of 4. i was told his gut was twisted and blocked making his tummy swollen. i was told heart and tummy issue together meant he probably had downs. i was told his heart was unfixable, and that a heart attack within the womb was highly likely any day. i was told his twisted gut meant a build up of fluid would happen, flooding his lungs and causing me a great deal of pain. i was offered the unthinkable.

the rest of that day is a bit of a blur, i was put into a quiet room and i called Rob to come straight to the hospital, he asked if everything was ok, i said no and he made his way. i rang my dad to come up and he said he was on his way, no questions. i then rang my best friend and words failed me, the tears flowed and reality started to sink in, nothing was ok. 

when my dad arrived my sister left with Brandon and we waited for Rob before speaking to the fetal doctor again.. she offered the unthinkable again and said the pregnancy would not last, i demanded a second opinion.

a few weeks later we were referred to Kings College in London, i laid on the bed ready for the scan and the room filled up.

they told me they couldn't do alot if anything and that the unthinkable is the kindest option, they advised it several times that day, and again on the next couple of visits, i refused to believe in anything other than my son.

we went backwards and forwards to queens for checks on my fluid levels, they remained fine, as did our baby's lungs.

on our final visit to Kings College, we were offered tests to see if our son had a terminal illness that would decide whether he could survive out of the womb, we were also offered tests for downs... when i refused a woman doctor asked me why i would not want to know, as why would i put myself through all of this for a child that could die, because quite simply 'his my child, id do anything for my children'

we were referred to St.Thomas when they finally understood that we were carrying on with this pregnancy whether they liked it or not.

we were put under the care of the tower team midwives as they deal with expectant mothers whose child is going to born with a problem.

we were given a consultant, who put into place a plan for inducing the birth, a plan for surgery and a team of people who we would be looked after by.

after careful monitoring on the 4th October (two days before the inducing date and 11 days before my due date!) our Son was born, Ronnie Frankie Brian West arrived naturally, in 4hrs, with a grand total of 2 mins pushing and not alot of gas n air! he was born 6lb 9oz, facing the London eye and looking just as perfect as his big brother.

i held him for a mater of minutes and then he was taken to neonatal, Rob went with him, and the entire family was outside over the moon!

within the hour he was 6lb 3oz. his gut had untwisted during pregnancy but there was still a slight blockage and they had to drain alot of gunk away. at just 16hrs old we signed consent and he was off for nearly 6hrs of gut surgery.

when he came back he was all puffy and sedated but just as perfect to us as he was yesterday. he was in PICU from that day. on day 3 we were called into a room with surgeons, consultants, doctors and nurses - genuinely confused we sat down and was told that Ronnie's Anatomy was more complicated that most, after scans and gut surgery they had this to say; Ronnie had a mid line liver, his stomach sat on the wrong side of his body and his spline could not be found in one piece, his heart had a large hole creating tow chambers, and his valves and veins were either blocked or in the wrong place. we were offered something called 'comfort care' as he wouldn't survive anesthetic, he wouldn't survive surgery and he was just too mixed up inside. i completely lost it, my fight for Ronnie just bubbled up inside of me, i wanted to hit every face in that room, and then i see Robs face. we left there to talk, and rang family members. everyone broke down on the phone, and then i spoke to my dad - the most negative person i know told me 'his gonna do it, of course his gonna do it, i know he will, what do they know' we went straight back up to be by our sons side, we were going through with the heart surgery.

 it was explained to us that there were 3 stages of surgery they could do, one now one when his a few months, one when his 3-4 and then it would be down to him how long he lasted before he needed a transplant. but he always would need one, his heart wouldn't last if they could get it to function, it would be short term.

at 4 days old our sweetheart went down for what felt like days, he came back and the surgeon was impressed at how successful the first stage had been, now it was down to Ronnie.

after a few days he was awake and the nurses named him 'Ironman' the little boy who was never meant to survive pregnancy, was now a week old and two surgery's down, sticking his fingers up to every doubt, every negative thought and medical professionals up and down the country!

 at just 15 days old our baby came home.

health visitors came home twice a week, as did community nurses.

we visited the hospital every few weeks for scans and he was constantly being monitored, his little life was delicate.

a few days before xmas we were admitted for an MRI scan, the plans were being made for his second operation.

on February 24th 2014 we were admitted for surgery the following day, i didn't sleep a wink and when Rob arrived at 7am the next morning the preps started 

at 8pm that evening our son was still in surgery, he had had a pulmonary artery transplant and couldn't stem the bleeding around it, everyone was there and yet i don't remember a single look on anyone's face. when he was finally brought back to PICU they had to leave his chest open, all those hrs of bypass had meant his little body was too swollen to stitch back up. 7 days later he went back to surgery to be closed back up, more complications meant he still couldn't be but they managed to stop the bleeding.

 over the days he had to go through Physio to get gunk off his lungs, dialysis to drain fluid off and a million other tests in between. eventually his chest was closed and we were letting him wake up. as he did it was clear he wasn't well, he had suffered a stroke under sedation and couldn't move his left side, he was reliant on the ventilator and his oxygen levels were dropping constantly.

Wednesday 12th march; sitting in AMT with my aunt a nurse comes down to tell me i need to be by my sons side, she didn't know how long he had left and that a consultant would be talking to me shortly. 

for days id refused to speak to doctors, the words 'comfort care' had been used and the negativity was too much, now not only did i have to speak to them, i had to tell Rob, who had popped into work for a few hrs that morning.

i felt my word falling apart and any control i had was gone, i didn't know how to react how to speak how to walk for the most part.

we sat in a doctors office that day and were told Ronnie's choices, he really didn't have any.

his kidneys were failing, his stomach had stopped working, his heart was not in any fit state and he had any infection throughout his entire body that he couldn't fight as he had no working spline, he couldn't breath without the ventilator and his lungs were struggling and his outlook was bleak. To stand any chance of being well enough to fight the infection, he needed to go back on the ventilator, to do this he needed to go under anesthetic - the said he probably wouldn't survive this as he was too weak. he would be facing months of recovery before he could get to the stage of being fit for surgery if he survived the ventilator going back, and the he would be back on the operating table and they weren't sure if there was anything they could do there. our baby was dying, it was obvious to anyone who saw him, he was weak, he had brain damage and anything below his heart had given up. we chose to take him to a hospice called Delmelza house, a place he could be cuddled and loved in his final hrs, free from tubes and machines and wires, frees from pain and surrounded by loved ones. we didn't want our baby to go under an anesthetic, we didn't want him to go in a hospital bed. he deserved so much more than that hospital bed!

On Thursday the 13th Match we met with palliative care and they started the ball rolling, Ronnie's Surgeon came to Rob and told him the only thing that got me through the following days 

'Ronnie was one in 6 billion, many babies with his diagnosis don't get to the stage of surgery, this may not have panned out for Ronnie but we've learnt from him, his little life has not been in vein' 

knowing my baby will go onto save another, saves me every day.

on the 14th March at 8:50pm i kissed my darling goodnight for the final time, my world fell apart right there and then, my heart broke in a way that it can never be fixed. i cant explain the feeling that i had then, and that i live with every day

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