July 30, 2020

Ronnies story .. pregnancy, birth and his first two weeks in the world

Its been a long time since i went back to the start so i will try not to miss anything important out. When i first typed out ‘Ronnies story’ i was in a fog of grief and fed up with the questions and assumptions, i typed it up in half an hour and uploaded it to a facebook page in my sons memory. At the time it felt like the right thing to do, i had relatives that had sat in hospital corridors with me and still found some of what i had wrote hard to read because they werent aware of lots of things, even now people have questions.

On May 28th 2013 we went for a routine 20 week scan at our local clinic. Every expectant parent is always excited for this (well i thought they were) and we were no different, we couldn’t wait to find out if baby no.2 would be a brother or sister for Brandon. within a few minutes of lifting my top up we had found out we were having another boy and were so excited! Brandon however wanted a sister and wasn’t exactly impressed!

We stayed put for another 10mins of poking and prodding before the sonographer announced we would need another scan as baby had some sort of ‘bubble’.. at that point we had no idea our lives would never be the same again.

Not thinking too much of it we agreed to go into the hospital for a second scan the next day, i was that unphased i told Rob to go into work and invited my sister along to see her nephew on the screen, we even had Brandon with us.

The woman scanning me had a look on her face, that two previous miscarriages had taught me, meant something was wrong. i turned to my sister who looked totally confused, another woman entered the room and they started talking ‘bubbles’ and said that we needed to have the heart checked – i sort of floated from that scan room into the next.

That next room was the biggie, there was no running away and it was very real. i laid there in silence while my sister tried to keep Brandon still, i kept looking at her for some reassurance but she had nothing to give me, neither of us had a clue what was happening or what it all meant

The room had filled up with people and one consultant was telling me her ‘findings’. One large hole in the heart creating two chambers instead of four, the heart was unfixable, twists and blockages in the gut meant fluid building up in his stomach could flood his lungs and cause me a great deal of pain, these things combined meant downs was highly likely and if baby didn’t have a heart attack in the womb he wouldn’t survive labor – termination was my best option..

The rest of the day i barely said two words .. i was sat in a ‘quiet room’ i rang Rob who asked if i was OK, when i said no he said he was on his way. I rang my dad and told him i needed him, no questions he was on his way. I then rang my best friend Gemma and words failed me, the tears came and reality started to hit me in waves. When my dad arrived my sister left with Brandon, we waited for Rob to arrive before speaking to the fetal medicine doctor, the unthinkable was offered again and she said the pregnancy would not last – i demanded a second opinion.

A few weeks later we were reffered to Kings College hospital in london, i laid on the bed ready to be scanned and the room filled up with about 16 different people. not one spoke to me or Rob. Eventually a little greek doctor turned to me and said that they couldnt do alot, if anything and that they unthinkable was was the kindest option. They advised this again that day, several times as we were passed from consultant to specialist repeatedly that afternoon, and again on the next few visits we made there. I couldnt listen to any of them, i only believed in my son, who at this point was 25weeks along and kicking my ribs.

over the next few weeks we went back and forth to our local hospital for checks on mine and babies fluid levels, they remained fine (high but fine) as did our baby boys lungs.

On our final visit to Kings college we were offered tests to see if baby had any terminal illnesses that would determine whether or not he could survive outside of the womb and again downs, i refused. The doctor asked me why i would put myself through all of this for a child that might die, because quite simply ‘his my child, il do anything for my children’.

At this point (around 33 weeks) we were referred to St.Thomas in Westminster where we were finally heard, they accepted that we were continuing with the pregnancy whether they liked it or not and began making plans for delivery. i was placed under the care of specialist midwives, i had a consultant that was by far the most optimistic person we had met at this point. He arranged a surgical team that would look after baby, they made a surgery plan, we had an induction plan and a team of specialists that would all play their part. We went to first aid courses, labor courses, NICU (neonatal intensive care unit) meetings, PICU (pediatric intensive care) tours, we met every nurse, midwife, consultant, doctor and surgeon in a matter of days .. and then on the 4th October (two days before our induction was booked) and 11days before his due date) our son was born.

Ronnie Frankie Brian West arrived naturally, in 4 hours, with a grand total of 1 minute and 16 seconds pushing and barely a minute of gas an air! He was facing the London Eye as he arrived and weighed a dinky 6lb 9oz, he looked just like his big brother. I got to hold him for a few minutes before he was taken to NICU, Rob went with him and our family was outside the room cooing at his little oxygen bubble while they waited for the lift!

wityhin an hour of being born Roo weighed 6lb 3oz, by some miracle his gut had untangled during pregnancy but there was still a blockage and they had to drain some of the gunk away. At just 16hours old we had signed consent forms and he was off for 6hours of gut surgery.

when he came back he was on the PICU ward, puffy and sedated but just as perfect to us as he was the day before when he first laid eyes on him. On day 3 we were called in to a room with surgeons, consultants, doctors and nurses – genuinely confused we sat down and were told that Ronnie’s anatomy was more complicated than most. After scans and gut surgery they had this to say; Ronnie had a mid lying 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 two chambers not four and his valves and veins were either blocked or in the wrong place. At this point we were offered something called comfort care, as he wouldn’t survive anesthetic, he couldn’t survive surgery and his insides were too mixed up. I lost it.. my fight for Ronnie had boiled over and i wanted to hit every face in that room, then i turned to see Robs face. We left the room and started calling family members, everyone broke on the phone and i mean really, it sounded horrific so i cant blame them! Then i rang my dad, the best for last apparently, he is a negative person always far from optimistic in most situations but his words hit me in a way i needed ‘his gonna do it, of course his gonna do it, i know he will, what do they know!’ – we marched straight back up to our sons side, we were going for heart surgery.

it was explained to us that there would be 3 stages of surgery for Roo, one lot now, one when he was 3-4 months old and a third when he was 3-4 years old, after that it was down to him how long his heart lasted before a transplant was needed, but he would always need one, his heart couldn’t last forever, everything was short term.

At just 4 days old our darling boy went for open heart surgery, after what felt like days he was wheeled back on to the ward and the surgeon was genuinely impressed at how well things had gone – now it was down to Roo.

after a few days he opened his big blue eyes and the Nurses called him Ironman. The little boy who wasn’t meant to survive pregnancy was now a week old, two surgeries down and waving the middle finger to ‘professionals’ up and down the country

at just 15 days old we took our boy home.

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