Thomas's Story

I know we have put statuses up along the way through our journey with Thomas Elijah but we would like you to know the whole story, and just why we are doing all we can to raise money for the N.I.C.U unit at St Mary's university hospital in Manchester. 

I got a call from Lou at work asking if we could talk, the first thing I said to her was “what have you done!” Little did I know she was about to make me the happiest man alive. She told me she was pregnant with our first baby, I was that happy I actually run around the building site hi 5’ing everyone insight including my boss.

When I got home I went straight out and bought 2 more tests just to be sure, and it was definitely right Lou was pregnant to both of our delight. 

Fast forward to the first scan and everything was going brilliantly the baby was going fine and there were no issues at all. All we wanted to know was if the baby was a boy or girl and I couldn’t wait for the 20week scan, so at 16 weeks we had a gender scan done in Burnley, I said from day one it was a boy, and it was.

We had the name picked for weeks, Thomas Elijah Lang❤️ we went out the same day and bought everything we saw for him. When the 20week scan came to us it was just an appointment we kneweverything
we needed to know, our perfect little man was due April and we were absolutely on top of the world about it.

We sat in the waiting room laughing and taking the mick of if each till we were called to go in. Louise confirmed her details and led of the bed and the nurse started the scan, 10 minutes in Lou was asked to go to the toilet and drain her bladder because the image wasn’t clear enough and baby Thomas was led funny, as he always was on every scan throughout the pregnancy. So, we went for a walk to get him moving
and returned about 15 minutes later, Lou led back on the bed and the nurse started to scan again.

We both knew something wasn’t right when another nurse came in and they both just stared at the screen what seemed like hours. we held each other’s hands, but we never spoke. Then we heard the nurse whisper to the other do you want me to tell them. She then turned to us and said “I’m sorry your baby has CDH” (Congenital Diaphragmatic
Hernia) “I know is bad news” can you follow me and I’ll get a doctor to come and speak to you”.

We were put in a freezing cold room and was told to wait for the doctor to come and speak to us that could tell us more about it, we waited nearly 40 minutes in that room before I went back out and told somebody we were in the room waiting and why we were in there. They had forgotten about us, Lou was in bits wanting to know what this CDH was.

The doctor finally came and told us that our baby boy had a hole in his diaphragm which was big enough to let his intestines and Liver pass through into his chest cavity which was taking the room up where his left lung was meant to be growing. Devastated would be an understatement to how we were feeling, we went Home that night and
both cried ourselves to sleep, I asked for a second opinion at Burnley so we were transferred to that hospital as before the CDH was confirmed and Thomas Elijah was given no chance of surviving to full term, I was speechless I didn’t know what to do, I just wrapped my arms around Lou while she cried.

The hospital only gave us two choices termination or carry on with no definitive knowledge to say Thomas was going to survive full term. We went home and absolutely broke down, we both couldn’t move or talk we just cried, that night I made a bed on the living room floor and that’s where we stayed day and night for 4 days. During those four days I researched CHD and what it was, I looked at the condition and how it affects new borns, the chances of survival, affect and conditions that may arise later in life the list goes on.

I then looked in other countries and the outcome of cases, I pushed myself to find everything answer to every question I had, so whenever Lou slept for an hour or so I when back to the research. I couldn’t give up on my little boy, neither of us could. I sat Lou down on the fifth day and asked her what she wanted, she told me she couldn’t give up and she needed to carry on, not only for us but for Thomas Elijah as well. She said we if we don’t get him the chance we would always ask
what if and she was right.

The following day I rang Burnley general and asked to be
transferred to St Marys university hospital, we were given an appointment the following week, so from that day to the appointment I must have read every bit of literature on CHD to prepare myself to face the doctors. To my surprise I found an operation that was being done to babies during pregnancy inside the mother’s stomach.

I then took that information and tried to find a hospital or
doctor in England, and I did find one, one doctor that’s all one in the whole of England and the operation was still in research phase an also wasn’t available outside of London. But this gave us hope and something to look into more.

On the day of the appointment we left the house and we didn’t
really speak in the car we just held each other’s hand, we had no idea what we were going to find out and what was going to happen. We checked in at reception and was told to follow the receptionist to the neonatal unit, the receptionist told us the doctor we were meant to be seeing was on leave so we would be seeing a doctor called Dr Chibuike Iruloh. This was the best thing that could have happened to us and the help he gave us as a family and the lengths he went to
was unbelievable.

Dr Chibuike Iruloh was a Consultant Obstetrician, and he is a
Sub-specialist in Maternal and Foetal Medicine. He called us in to the room and talked to us about what he was going to do and he made Lou feel so much calmer.

He sat across from us both and told us “I’m so sorry but baby
has CDH, I’m sorry” he then gave us time to take onboard what he had said, I told him that at Burnley hospital they had told us he had no chance of making birth and I asked him if this was right, he told us that anything could happen between now and then. I then asked him Thomas’s chance of survival, he said “after measuring baby and looking at similar cases baby has about 30% chance of survival” which to us was bitter sweet.

We talked for ages and then he asked us if we had thought about
what we wanted to do, we both said we want to carry on and we told him why, if we don’t give him a fighting chance we will always ask what if and forget any outcomes that may happen we would have him here with us to hold and cuddle and if need be to say goodbye, he smiled and told us we were so brave. We had so many question and as the appointment was about to end nobody had mentioned the
surgery I had found in London.

So, I asked him the question, “I’ve done a lot of research and
I’ve found a surgery called Fetoscopic endoluminal tracheal occlusion (FETO) and I want to know more about it” Dr Iruloh was taken back a bit and explained the surgery to me which I already knew about. I told him more about it than he knew I think at that time. He had to stop me and stay I need to get more information so we can continue the conversation, he came back to the room 10 minutes later and told me more about the surgery but I know that to.

I told him that I knew the surgery was only available in London
and it was in research phases and I told him the hospital and doctor to which made him smile, he said “I see you have done your research” I told him what I had found and if this was the only way we could improve Thomas’s chance of survival that it was the only thing we wanted to do and the only thing we would accept.

He agreed to help us and to try and get us an appointment but he
said we would have to go the kings foetal research centre in London, and also said the fluid around Thomas would have to be tested to check for other possible condition Thomas may have and we would have to come back in 3 weeks to have it done. We left feeling a little bit more hopeful and knowing he had gone from 0% to 30% survival made gave us something to fight for.

It would drive Lou crazy waiting for the appointment and I couldn’t have her more upset than she already was so the next day I started to ring the hospital back asked for cancelled appointments, it took over 20 calls and 3 days but I got one for the follow Monday.


Monday morning came and it was back to the St Marys hospital in Manchester to see Dr Iruloh again. We were called in and Dr Iruloh sat us down and said he was surprised to see us so soon but knew what I had been doing calling every few hours and laughed about it. He then explained the procedure and the risks involved to us both and trust me if it was me I’d have ran out of the room.

Lou had to have a 200mm needle directly into her stomach into membrane with the amniotic fluid around Thomas under ultrasound. She was so brave she didn’t look she just held my hand. After the test we were put in a room for Lou to recover due to the increased risk of her waters breaking and miscarrying Thomas. Later that day we were told we could leave to go home and the test would come back in 3 weeks.
The test only took just a week to come back at the time I was in Ireland I got a phone call off Lou telling that both parts of the test where clear, I was so happy that I got upset it was such a massive weight lifted for Lou and for me, the next step was getting the appointment in London.

Dr Iruloh took over getting us referred to London and I have no
doubt what so ever that he pushed and pushed to get us there, this man is one of the greatest men I’ve ever had the pleasure to meet and know. He is so dedicated to his work and pushes his self to learn more to help these little tiny unborn children. And I own him every minute we got with Thomas Elijah.

True to his word he got us in for the appointment in London. We were on our way. The time we waited was a killer but the day eventually came, we set off the day before and stopped with Zak Khan for the night, we had tea and talk then nicked his bed while he slept on the floor. At 7am the next day we were off to the appointment. After we got there we checked he and waited in the reception, 10 minutes later I looked up to see Dr Iruloh at the desk, we were shocked but thought he was there for some other reason, he then turned around and spotted us and came over to sit down.

We were called and Dr Iruloh

again asked us if he could join Lou in the appointment she said of course we

went into a room where Lou was examined and had a scan, there was 3 doctors in

t

he room, us and also Dr Iruloh who told them everything about Thomas. The

doctor had picked up on something with Thomas and had a talk with our doctor.

They then sat us down to tell us there was something they had spotted that they wanted to check with a cardiologist which meant we needed a second scan but on his heart in another room, we walked to the room and it was full.

Dr Iruloh was with us all the way. There were at least 10 doctors in there to check to see if Thomas Elijah’s heart was ok, but It wasn’t. Thomas’s liver and intestines where in the left side of his chest and due to that had pushed his heart into the right side stopping his right lung from growing we were told he also had ventricular septal defect (VSD), This meant that he would be able to have the surgery he needed, we were devastated everything we had done to get there only for them to
tell us no.

VSD is a hole in the wall separating the two lower chambers of the heart. In an hour he was put on the server category. We were put in a private room and Dr Iruloh came with us talk help us and talk about what we could do next. About 20 minutes later the doctor that scanned Lou came back and said she was sorry about the news of Thomas
having VSD, she then smiled and told us all 3 of the doctors and cardiologist had been talking to the professor and that with all the information he had agreed to do the surgery at random, which meant Thomas and Lou could have the operation but we wouldn’t be part of the research trial.

I cried my eyes out while Dr Iruloh explained what she meant to Lou and after he had finished I just hugged her. The female doctor came back and bought Lou a consent form for the professor, she then told her your op will be in an hour so you must stay in London for the weekend to recover after surgery and then she would be ok to return home.

The next we knew Lou was getting injections of antibiotics and
having bloods taken everything was moving so fast as soon as the blood results came back she was taken to the scan room to have the operation. This was the first time we met the Prof, Prof Kypros Nicolaides the only person in UK able to do the surgery on Lou and Thomas. He came into the room and said “the big boss is here” which made us all laugh and calm the nerves in the room, Dr Iruloh spoke to the prof because he is one of the people he had followed in his career and been to watch speak Lou was prepped for the surgery and I sat right next to her throughout it with Dr Iruloh behind me.

The professor then sat with Lou and explained what was about to
happen. He was going to cut into her stomach under local anaesthetic so she wasn’t asleep. He then put a 3mm thick needle that was about 40cm long into the cut he pushed it through the muscles in her stomach and into her fluid around Thomas.

He then put a 2mm needle into the 3mm needle and did an
ultrasound to find where the needle was to put Thomas to sleep, it took over 30minutes and 4 injections for him to go to sleep he fought it, when he was under the professor manipulated Thomas in to a position where he could get a camera into his throat. The camera was put into the needle and we all watched the screen we got to see his face for the first time, his nose, eyes, eye lashes and lips, he was beautiful.

The needle and camera where guided by the professor into Thomas’s mouth down his throat pass his vocal chords and into his Trachea, a
balloon was then put in to his trachea and inflated to pressurise the fluid in his lungs to force them to grow it was amazing to watch the prof at work.

He then versed the process and then the doctors took over to
drain Lou of over a litre of fluid out of her and from around Thomas, Lou was then stitched up. within an hour Lou was ready to go home, this amazing girl was walking about and laughing about what she had just had done she did brilliantly. We thanked everyone at the centre and Dr Iruloh and left to find a hotel to stay at.

The following day we had a drive out into London then set off

We tried to fill our time with days out but Lou struggled with walking and was in pain a lot of the time she was constantly worried she wasn’t
doing things right, but she couldn’t have done anything better. The last visit to the foetal research centre was when she was 34 weeks gone.

We got to the centre checked in and waited to see the professor,
we went to the ultrasound round and the professor was waiting for us he did a scan and we were put in a private room for Lou to have antibiotics and bloods taken again. She was like a pin cushion she had holes all over her but she soldiered on. When went back to the ultrasound room where she was prepped for the operation.

The professor then did the operation as he did on the first visit
but it was bad news he couldn’t find the balloon, on our first visit Thomas was under weight and was small, Thomas had grown so fast that he had expelled it, the operation had failed it was absolutely gutting after everything we had done the professor versed the operation as he did last time and held Lou’s hand and said he was sorry. Just at that point Dr Iruloh arrived he wanted to be with us again on the day but his train had been stopped on the tracks due to the snow, he had been travelling for hours to be with us and he had missed the operation.

I got straight up and shook his hand. He was informed about the
feto failure and he comforted Lou and told us our next steps. The next day we travelled home. We had an appointment with Dr Iruloh a few days later to start to plan the birth of Thomas Elijah, I did research to see the best delivery date in all the cases of CDH and the longer he was with Lou the better, Dr Iruloh wanted 37 weeks and I wanted 39-40week. We talked about it and went to and fro in the end we laughed and agreed on 38 weeks, but that wasn’t to be. 

The birth plan was in place Thomas was a good weight and all we
wanted was him here for the doctors to help him. Lou was in hospital for ten days waiting to give birth she had lost her waters but was not in labour. This meant Thomas and Lou where at risk of infection and both were put on antibiotics to stop anything arising.

We were told if he was there for the 19th she would be induced.
I went back to work to keep the money coming in so we didn’t struggle, and I visited Lou after work then I’d drive home most nights. On the 19th the doctors came to induce Lou and to our surprise Thomas had made his mind up he was coming without the help of the doctors, she was already 2cm dilated. Yet again Lou took it all in her stride and powered through for hours, all I could do was hold her hand and stand there fanning her down with a piece of paper. She was in labour for hours. We were told when Thomas came we wouldn’t be able to hold him
and he would have to go straight to N.I.C.U.

Thomas Elijah Lang was born Tuesday 19th March at 14:16pm and to
our shock Lou did get to hold him straight away while they cut the cord, he was then taken by the doctors to clear his airways and help him try to breath. He was taken straight to NICU and I never left his side for a second, but I had to leave Lou’s to be with him, my dad was waiting outside the room and as soon as

It was so hard to watch them taking bloods, putting him on the
ventilator, taking his pressure the list goes on, this isn’t something most
parents would watch and they try to talk you out of it but I couldn’t leave
him, just stood there silently absolutely heartbroken, till the nurse assigned to him Lauren saw me and realised how upset I was, she came to me and give me a hug and introduced herself as Thomas’s main carer. I stayed as long as I could but then had to leave the room for a minute to get myself straight.

Thomas was put to sleep and I held his little hand for hours, I
was so torn as I needed to check on Lou but I couldn’t leave Thomas, Lauren said he would be ok and said go see her if anything changed she would call me straight away. I run back to Lou and gave her a massive hug and told her she did brilliantly, I showed her all the photos I’d took of him. I then ask for a wheel chair for Lou to take her to see her boy because she had been cut in 3 different place and needed a lot of stitches so she couldn’t walk.

I wheeled her down and warned her about all the wires and tubes

His stats stabilised and I held his hand till I fell asleep and the
night nurse Sonia woke me up and told me to go get some sleep and if anything changed she would ring us at around 2am Wednesday, I got a call at 4:30am and was asked to go back to NICU, Thomas was not getting enough oxygen so his stats where down, I sat with him an held his hand till about 6:30. I spoke to the doctor and he gave me two options that we had to make for Thomas so I went to talk to Louise and when I got back to her Thomas took a turn for the worse and
deteriorated very quickly we just got back to his side just in time.

Thomas Elijah Lang passed away on Wednesday 20th March 19 hours after being born. Sonia and Lauren took such good care of him, Sonia apologised to me and said she did everything she could and I could see she was so upset and had been crying. I can’t thank them enough, every baby on that ward has a nurse that sits with them constantly monitoring them all day they are amazing people. I asked them to take everything on him off and to wrap him in his blanket and I carried him to a nursery where we got to hold and cuddle him to make a few memories with him.

This is the only part of the journey I don’t want to share as it is for me and Lou. That was our time with him and both our families. He was absolutely beautiful with lots of dark hair like his mummy, we changed his nappy, bathed and dressed him, he had lots of cuddles and loads of kisses we all slept together as well. But we had to leave him Thursday night as we he needed to go to his special nursery. 

We are both devastated and just need some time to go through what we have all been through. All his nurses came to see him and say goodbye as well.Dr Iruloh also came to find us to see Thomas and say goodbye, he came he and lent over him on his bed, he stroked his face and told him how he had been so strong he spent around 10 minutes with him then he said his last goodbye.

He then hugged us both and left the room upset, he was with Thomas from the start to the end. This is why we are doing all we can for the NICU we love each and every one of them and they care so much, to them they don’t have a job, they have a calling to help.

Thomas wasn’t just another baby Thomas was part of them. To see them cry over our son and how hard they tried to save him and keep him comfortable really hammered it home for us. These doctors and nurses give up most of their lives to save our children and also to help us, so let’s thank them and do anything we can to help.

Throughout the whole journey we both had to try and carry on day
to day but it was so hard. Lou worked right up till she was 32weeks pregnant. And I worked till the day he was born, even though we both found it so hard to even get up in morning. We needed to carry on for him, and that is still the same to this day, we are fighters and will carry on the fight in his name. How could we give up when he never gave up on his battle.

Thomas Elijah has left a legacy with being the first baby to be
treated that lives outside of London and has helped Dr Iruloh to get the FETO surgery to be brought to Manchester. Thomas, Lou, Dr iruloh and myself will help save possibly thousands of babies with our journey together.

Thank you all so much for
reading this and taking the time to be part of our night for our little man
Thomas Elijah Lang