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Hello everyone,

My name is Harley, I'm a proud mummy to both of my amazing boys Ashton aged 5 & Roman aged 10 months. 

This is how my story starts, in February 2014 I found out I was pregnant with my second child Roman it was one of the happiest days of my life.
April 2014 I was rushed to my local A&E I was 8 weeks pregnant and had suffered a huge bleed. So they did the usual blood tests etc... Kept me in overnight for a scan in the morning. They did say on several occasions that I looks like I had suffered a miscarriage. Myself and Roman's dad prepared ourselves for the worst. The morning came and I was taken to be scanned I honestly thought he'd gone but there he was this tiny little bean like bubba on the screen his heart beating away. I was so relieved. I was put on bed rest for a couple of weeks.
As I got further along in my pregnancy I all of a sudden had this huge bump out of nowhere I was huge. After a few more weeks I was really suffering it was painful to move, to sleep, to eat.
I was booked in for regular scans due to suffering with Obstetric Cholastasis in my first pregnancy which I suffered with again during this pregnancy. OC is horrible it makes you feel like your whole body feel like it itching uncontrollably. I also suffered with quite bad anaemia in both pregnancies too.
I was at the hospital on a weekly basis to monitor Roman and make sure he was ok.
At one of my scans the sonographer noticed that I had an awful lot of amniotic fluid more than your suppose to have. This was causing the big bump and pain. I was then diganosed with Polyhydramnios which is basically a condition that few women suffer from. Its caused by excessive fluid around the baby.
Finally after all of the problems in my pregnancy they decided to induce me on the 30th of October 2014.
Scared and excited I arrived at the hospital got a good nights sleep and was induced. It was now the next day Halloween 31/10/2014. My labour didn't go to well, Roman's heart rate kept dropping I was so tired and drained I had no energy left. They decided to rush me in for an emergency C-Section. Within a matter of minutes my beautiful baby Roman was born.
They quickly noticed Roman turning blue and realised that he kept choking he was transferred straight down to the Neonatal unit. After a few doctors saw him they diagnosed him with a rare condition call Oesophageal Atresia. OA is such a rare condition but also has so many different types, OA is where the top end of the food pipe by the throat and the bottom end which is attached to the stomach are not connected which results in the babies not being able to swallow, these are the medical terms and I'm probably not saying it right but this is the easiest way to explain it.
Roman was transferred to St George's Hospital Tooting in a matter of a couple of hours as they didn't have to specialists at St Helier Hospital to be able to treat his condition. At this point I still hadn't seen him nor held him, they quickly let me have a quick cuddle before they took him away. I was heart broken.
He arrived with his dad at St George's in the early hours of the 1st of November. He was put straight into an incubator put on drips and all different monitors. He was also fitted with a replogal tube into his mouth. The tube is connected to a constant suction and sits in the top end of the Oesophagus (food pipe) to drain all of the secretions (saliva/mucus) out so he doesn't choke and it pour into his lungs which could cause infections and make him even more sick. The replogal works really well but also blocks quite a lot so they tend to flush them usually every 15mins with water to help. As the babies get bigger they usually have them in the nose which Roman did.
He was only a few hours old and had gone through so much but as I had a C-Section I couldn't move and had to be transferred the next day.
Finally the next day arrived I was straight up with the help of my mum and friend Nina. That afternoon I was transferred to St George's, i went straight to the neonatal unit to see my boy. I saw his tiny little self in his incubator covered in wires, drips everywhere sucking away on this ridiculously big dummy.
That afternoon I had to sign my first ever consent form for them to go in a try to repair the Oesophagus. Off he went to theatre, a couple of hours later the doctors came to find us to let us know that Roman had Long Gap OA and that they couldn't do the repair until he had grown a little more. Down in theatre they fitted him with a gastrostomy tube which is a tube and goes directly into the stomach allowing him to be able to have his milk safely.
So now it was the waiting game we was told 2 months before they would try again. The only good thing was that Roman could finally have some milk 5 days after being born.
We waited patiently for December to come along, the day of the op was here we did the usual signing of the consent etc... Down he went again bless him. 45mins later I received a phone call to say that the gap had got even bigger and they was not able to do the repair. I was devastated, it's every parents worst nightmare having a child stuck in hospital and now it was going to be another 2 months again until they tried for the third time. The daily trips up the hospital were heart breaking I just wanted him home as every parent would. Having to leave him there every night was horrible. He spent his 1st Christmas in the High Dependancy unit in St George's, I couldn't enjoy it at all I had to pretend it wasn't really happening otherwise I would have been a wreck the whole day.
Roman wasn't really gaining much weight so they decided to switch him to a high calorie milk called Infatrini hoping that it would make him grow quicker which it did he gained weight rapidly. Before we knew it February had arrived it was time for the 3rd attempt, all his doctors and surgeons were all very confident this time around. I did the usual signed my consent forms as always and within an hour he was taken to theatre. I was told that the op should take around 4 hours or so. So I waited patiently in the family room, 4 hours had passed and still no sign of Roman, then 6 hours then at 8 hours I was going out of my mind. One of the ward sisters went down to theatre to find out what was going on. She came back to let me know that they was just finishing up. Around 20mins later Roman's surgeon finally appeared. He explained that the surgery was a lot tougher than expected but he had managed to do it. He also explained that as it was a tight repair Roman would have to stay in an induced coma for a week to give it time to heal to avoid any damage to it. I shook his hand and thanked him for finally fixing my baby.
I couldn't wait to see Roman I ran over to the intensive care unit to find my baby not looking like himself at all I didn't know what I was expecting but it wasn't what I saw. Roman was swollen, on a ventilator he didn't look real. He was on a ventilator due to being in the induced coma he needed it to breathe for him. I was traumatised by what I saw.
I couldn't return to the hospital for a couple of days. In that time they had decided to send him to the Paediatric Intensive Care Unit for one to one care as they needed the room in NICU which i wasn't too pleased about as everyone knew him there.
Now that he was on PICU his brother my eldest was finally allowed to meet him properly for the first time as he wasn't allowed to see him before hand.
Ashton was so excited to meet his brother but Roman was still very ill. A week later he was still laying there on a ventilator that was breathing for him I mean he was taking a couple of breaths of his own but not enough to breathe for himself. Still paralysed and on an awful lot of sedation so was sound asleep. I thought was he would be off these machines by now.
They decided to wean him off the heavy medication he was on to allow him to try to breathe on his own, he finally did it after a couple of days and they took his ventilator tube out.
He was put on a small amount of oxygen just through his nose for a couple of days.
2 or 3 days later after feeding him he struggled badly with his breathing he went blue. So it was back to the ventilator but he was leaking a lot of oxygen so was only getting a very small amount into his lungs.
He begun to get really sick he wasn't himself his little eyes were so sad I didn't know what to do. I knew he wasn't right but nobody would listen to me. After having a crazy meltdown I was finally heard and a meeting was called with the senior doctors and the surgeons involved with Roman. Everyone knew that he was getting worse and worse but nobody could understand why. They decided to do an emergency B&B you'll see me talk a lot about these throughout this. It's a Bronchoscopy & Bronchogram which takes a look down into the airway and pours in dye to see if there are any holes and where they are causing the leak problem that Roman had. They come back saying they couldn't see anything wrong.
After having his surgeons stand around looking very upset and adamant that they didn't know what was wrong they finally made a referral to the most amazing place in this world Great Ormond Street Children's Hospital aka GOSH.
Even tho it should have been done as soon as the leak appeared but I was finally done.
They transferred him over by emergency ambulance on the evening of the 16th of February.
Now myself and Roman's dad stayed at home with my other son as we didn't not know the extent of what was happening with Roman.
The next morning we made our way to GOSH, it was all new to us we was extreme anxious but excited to see our baby. We was directed to their PICU department and shown where Roman was. We went over only to find him on this funny looking and very loud machine called a breathing oscillator which was breathing fully for him as he couldn't. We was quite alarmed at this point. He was laying there looking so pale he had no life in him at all. Within a couple of minutes we was surrounded my doctors, anaesthetises, explaining how ill our baby really was and they had to act fast as he was deteriorating by the minute. They needed to their own B&B but Roman was so high risk it was we either do it or he wasn't going to make it. The main problem was getting him down to theatre on the oscillator down there as they couldn't transport it with him down there. So they had to manually pump breaths into him until he was down. After about an hour they come back to tell us that Roman has a big tear in the main part of his airway and two small ones on the sides that go off into the lungs also. This I why the leak was as bad as it was.
They decided to call in an expert, I call him my angel the most amazing man I've ever met Mr Professor Martin Elliot.
Me and Fletcher Roman's dad were taken to a room away from everything and sat down with Professor Elliot, we looked at each other we knew by now that things were serious.
Professor Elliot told us what he needed to do and that was to repair the airway as soon as possible but it was going to be hard as so much damage had been caused, and it was a very hard place to operate on. He had done this type of surgery a lot and some had been successful others not. He explained how he would have to open Roman's chest and put him onto a heart bypass to be able to perform the surgery but this was the problem, Roman was so ill and weak he was honest with us and gave us a 50% chance of him making it. It was more likely that they was going to lose him on the operating table. I felt like someone had ripped my heart out and repeatedly stamped on it. I couldn't breathe I couldn't see due to the amount of tears falling from my eyes. It was now 8pm on the 17th of Feb 2015, it was either sign the consent and let Professor Elliot do what he does best or we make the decision to let Roman pass away. I was so scared but I signed and put all my trust into Professor Elliot.
We went back to Roman and kissed him goodbye we didn't know if it would be the last time we'd see him. Professor Elliot took my number and told us to go and get some rest and that he would call as soon as he had some news.
We went back to the accommodation that GOSH had provided for us, we sat and watched the Chelsea match as the boys are big fans. We then had to contact all our family to tell them after plenty of tears everyone decided to pray and keep strong for Roman as there was no doubt in their minds he was pulling through.
Myself and Fletcher spent a couple of hours in the chapel at GOSH which I must say is one of the most beautiful places I've ever seen, praying and pleading with God and loved ones that had passed to keep him safe.
After a few hours I finally got the phone call to say that he had made it through surgery and had behaved the whole way.
Professor Elliot asked us to meet him in the waiting area of Flamingo ward which is the Cardiac Intensive Care Unit. We literally ran there as fast as we could.
Professor Elliot explained what he had done in surgery. So he had repaired the big hole on the airway with a pericardial patch, there's a sac around the heart that doesn't really serve a purpose so he used a small piece of it to create the patch. He also had to undo the stitches on the 2 other holes that had been created at St George's as they were too tight and of course he then had to undo the repair that was made to his oesophagus.
I was shocked according to St George's they didn't know what was wrong with him but they clearly did.
My poor baby nearly lost his life due to there actions.
After thanking the great man that saved my baby's life I finally got to see him in recovery.
There he was on a ventilator, cannula's in his feet and hands, chest drains bubbling away, all wired up to his meds and sats monitor.
He was finally safe but the next 48hrs were critical.
The 48hrs passed so quickly before we knew it he was having his drains taken out and slowly being weaned off his medicines.
He was still on a ventilator but he had his colour back he was opening his eyes and looking at me and fletcher.
He started progressing really well they decided to put a replogal back in his nose due to the amount of secretions he was producing but unfortunately it went straight through his the top end of his oesophagus which was a cause for concern as the secretions were leaking into his body. They managed to get his secretions under control and he was ok for around 2weeks after. During a feed milk started coming up from his stomach into his airway which caused stomach acid to undo part of the pericardial patch they had placed on the hole.
He went down to theatre so they could find out what was happening, they found a fistula between the stomach and the airway a connection between the two that was causing this to happen.
Roman deteriorated yet again he ended up with another major oxygen leak which cause a pneumothorax and his lungs kept collapsing, the air leak was causing everything to push against his heart. His heart rate kept dropping badly to the point we were losing him nearly every couple of hours. They placed a drain on his side to release the air so it would relieve the pressure on the heart.
The doctors and surgeon Nagarajan Muthialu another amazing man pulled us to one side to explain what was happening. They needed to urgently operate on Roman again. Mr Muthialu needed to perform the same life saving surgery that Roman had only had 3 weeks previous to now but this time the survival rate was even less he had a 25% chance of making it. It was the same thing again if we didn't do anything he definitely wasn't going to make it so we had no choice but to sign the consent and let him go again. We was asked if we would like to have him christened as they didn't think he would make it through the night.
He went to surgery early the next morning, he was put back on a heart bypass again and Professor Elliot and Mr Muthialu worked their magic again.
He made it of course my boy is a fighter he wasn't going to give up on us like that.
He came back into recovery the cheat drains were there again bubbling away, the ventilator doing its job he was highly sedated and pain free.
Over the next couple of weeks he got stronger and stronger, he made an amazing recovery his surgeons are still pretty amazed with him.
He was discharged from CICU and transferred to PICU. It felt amazing to have him out of there and on the road to recovery.
The next few weeks were spent in PICU recovering and trying to wean him off the ventilator. He failed twice but on the 3rd time he did it.
I could finally cuddle my baby after months of just looking at him. It was the best thing ever.
Roman over the next few weeks had to undergo regular B&Bs and other things which may I add involved him going under anaesthetic each time.
Finally it was time to meet with Professor De Coppi Roman's now general surgeon, he had wanted to give Roman an Oesophagostomy which is a small 2p sized hole at the side of his neck and bring the top part of his Oesophagus out through it to allow his secretions to flow freely into a stoma bag. We could have potentially had another replogal but that would have meant Roman staying in hospital for up to a year as it required specialist care that I could not provide at home.
We went ahead with the surgery and Roman now has a stoma at the side of his neck which I have to attach bags to several times a day so his secretions can come out freely without him choking or any spilling into his lungs.
Roman handled the surgery like a soldier but had to be put back on a ventilator temporarily to allow him to recover nicely which he did.
Another week passed and Roman was discharged onto Squirrel Ward which is a surgical ward that usually results in taking your babies home.
Roman was doing so so well until we was a week away from discharge and he started struggling to breath again my heart sunk. They decided to transfer him straight to PICU and put him into a ventilator as he was exhausted and was really fighting to breathe. The next day he was scheduled in for a B&B and an MLB which is a Microlaryngoscopy and a Bronchoscopy its a look down into the airway.
So here we was again back down to theatre he went. They discovered what they expected and that was narrowing in the top of his airway where the repairs were made. The scar tissues were causing it to tighten its the same we get a cut it starts to feel tight as it heals. This is what was happening to Roman's airway. They also noticed he has severe tracheomalacia the bottom part of his airway was floppy.
They had to balloon the airway to open it back up and cut some parts to allow it to stay open.
The tracheomalacia would have to heal it's self.
Roman ended up having this procedure done a few times over the next couple of weeks.
He was finally taken back off the ventilator the following day and transferred back to Squirrel Ward.
I think it was around 2 weeks later it happened again, they tried there hardest to avoid it they tried adrenaline nebulisers, salbutamol ones nothing was working it was a trip back to PICU again.
He had all the same procedures again, and yet again was taken off the ventilator a couple of days later and back to Squirrel ward.
Roman finally started behaving and two weeks later was allowed to come home for two days as a trial.
I haven't really mentioned what's involved in Roman's everyday care he has to obviously be tube fed through his stomach so 4 times a day he has gravity feeds which involves giving him milk through a tube that locks into his gastrostomy peg in his stomach. The tube gets attached to a syringe which the milk goes in and you basically hold it until the milk goes down.
Then at night he has a milk pump that does it for me I just have to fill a bottle with his milk every 4-6 hours and the milk pump does the rest.
Roman's is on several medicines some of which I have to make up myself and I have to give these through the tube in his belly 3 times a day.
He obviously has his neck stoma too which I have to change the bag on several times a day. I have to cut out the sticky disc that goes directly onto his neck attach the plastic bag to it and put it in place.
I have to bath Roman several times a day due to his bags coming off or
leaking and obviously he gets through a lot of clothes that need constantly washing.
I also occasionally have to give him a nebuliser to loosen any secretions to make it easier for him to push them out of his stoma. That's done by filling saline water into the machine and holding it in front of his face for around 20mins.
When he really struggles I have to use his suction machine which has an anchor shaped tube on the end and I put it in his mouth to get any saliva he may be pouching or any mucus that may be stuck at the back of his throat . Also when you are at home you don't have disposable syringes you have to wash each one and sterilise the buggers.
Anyway back to the 2 day release home from GOSH I had to be trained to be able to do all of the above for him.
I stayed overnight on the ward to get a taster of what it involved which was amazing it was nice to feel like I was caring for him as any mother wants to do but I had been deprived of for so long.
I loved every minute and the next morning Roman came home for the first time EVER!!!
It was so overwhelming at first my house was inundated with people wanting to see him.
When I finally got him to myself I started doing all his bits for him. Made sure all his stuff was sterile and all surfaces where I prepared his stuff was too.
I took him out in his pram went shopping with him. I could finally be a normal mum.
After the two days he had to stay a night in GOSH just to see how he was doing but was discharged fully the next day. I had my baby back.
Unfortunately it only lasted a week his breathing got bad again, he had caught a chest infection, it was straight to my local A&E then straight to GOSH.
He was rushed straight to Squirrel ward again, where they stabilised him but the next day he deteriorated again. He ended up back on a ventilator in PICU. I'd only just got him back and he was taken away from me again I was in bits.
He was put on IV antibiotics for a week had another MLB and they ballooned the airway again and after 2 weeks of being at GOSH again he was back home.
He's been back home ever since I think it's been about 3months now. Roman goes back to GOSH regularly for his MLBs to keep his airway open.
My baby is now 10 months and doing so well. He's behind developmentally but he's getting there slowly and I couldn't be more proud.
We are surrounded by an amazing community team of nurses, health visitors, physiotherapists, speech and language therapists and dieticians. 

Roman has continued to do well at home we haven't had any hospital trips for just over a year until yesterday 27/02/17. 

So Roman had another life changing surgery, yesterday afternoon. He finally had his Gastric Pull Up surgery which is a procedure that involves moving this stomach up into his chest and connecting it to the oesophagus (food pipe) at the top of this throat. They also had to had to close his gastrostomy site (where his feeding button is) and his esophagostomy which is the stoma on his neck where his saliva drained into. 

They've fitted him with a JEJ tube that runs into his small bowel allowing him to still have small feeds whilst he's learning to feed orally. 

His surgery was 8 hours long yesterday and I cannot thank Professor De Coppi and his team for the amazing job they did not only keeping him safe but the repair also. He's currently highly sedated on intensive care at GOSH where he will stay for at least 5-7 days as they need him to be still to allow the repair to heal. He's currently wired up to so many sedatives and medicines which brings back so many memories but at least I kno he's not in pain. They are hoping that on Saturday evening they will slowly start to wean him off  of the drugs and start bringing him round. Once they are all happy with him he will be going onto the ward where we will start intensive therapy to help him learn to eat and hopefully within 6-8 weeks I will have my baby home again. 

I don't know what the future holds but I want to set up this fund for Great Ormond St who gave me the chance to bring my baby home.

Roman is a true fighter and I'm so lucky to have him. He deserves everything and more.

I would like to thank everyone in advance for any donations made.

Thank you for taking the time to read this.
Lots of love, hugs & kisses Harley, Ashton and Roman x