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My Plea:

Thomas Elijah
I have always wanted to be a daddy and have children.
My journey with my little angel baby started when I got a surprise call from partner (louise) 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 five’ing everyone insight including my boss.
When I got home i still couldn’t believe it or take it in, so I went straight out and bought two more tests just to be sure she was pregnant. And it was definitely right Lou was pregnant to both of our delight. I couldn’t wait to become a proper family and be daddy with my beautiful girl. Louise was 6 weeks pregnant when we first found out, It took weeks for it to sink in properly. And it was set in stone for me at the first scan, everything was going brilliantly the baby was growing fine and there was 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 at precise glimpse. I said from day one it was a boy, we had the name picked for weeks, Thomas Elijah Lang. I was over the moon we went out the same day and bought everything we saw for him.

The next few weeks I treated lou like the queen she is and took care of her the best I could after work. When the 20 week scan came around to us it was just an appointment we knew everything we needed to know, our perfect little man was due April and we where absolutely on top of the world about it.

We sat in the waiting room at Queen’s Park hospital laughing and taking the mick of each other till we where called to go in. Louise confirmed her details and led on the bed and the nurse started the scan, 10 minutes in the nurse asked louise to go to the toilet and drain her bladder because the image on the screen were not clear enough, and baby Thomas was led funny.

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 where getting worried, I could see lou was getting nervous, so i held her hand and tried to let her know I was there but we never spoke.

we heard the second nurse whisper to the other do you want me to tell them and she said yes. She then turned to us and said “I’m sorry your baby has CDH” (Congenital Diaphragmatic Hernia) “I know is bad knews”, we just looked at each other and didn’t say anything we didn’t know what CDH was. We asked if it was bad and all that was said was “can you follow me and I’ll get a doctor to come and speak to you”.

We where 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. I went back out and found a nurse who I told we was in the room waiting and why we where in there. They had forgotten about us, lou was in bits wanting to know what this CDH was, I told her not to check on her phone and that the doctor would be in soon. The doctor finally came after being in there an hour, he 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. When we woke up we couldn’t believe what was going on, I needed to know if it was definitely CDH, so I asked to be transferred for a second opinion at Burnley hospital. we where transferred and Burnley hospital as before confirmed that our little man had CDH. 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, I had no answers for her or words of comfort I just stood there empty.
The hospital only gave us two choices which where termination or carry on with no definitive knowledge to say Thomas was going to survive full term. We went home and absolutely broke down. I remember it like it was yesterday 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.

The first day I was selfish and All I thought about was why me and louise an why our baby after wanting this for so long, I felt cheated. I couldn’t sleep and I remember looking across the living room and seeing my laptop sat on the bookcase and thinking to my self don’t go looking and searching on the net. I must of cried my self to sleep, I woke up about an hour later, I looked back at the bookcase saw my laptop again and I couldn’t stop my self I grabbed it for the the next four days I researched CDH and what it was. This was the start of the months of work researching Into the CDH. I looked at the condition and how it affects new borns, the chances of survival, affect on the life span, on going treatments the would be needed. If they feel any pain while this is happening and conditions that may arise later in life, there was so much I looked into to find answers that I wanted to know. I then looked in other countries and the outcome of cases, I pushed myself to find everything answer to every question I had, so when ever lou slept for a hour, after I finished work, when I woke up in the night I when back to the research. I was looking to see if there was anything we could do to make him more comfortable and information on how these little warriors cope during pregnancy and also after birth if they survive. 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 if we don’t get him the chance to fight we would always ask what if, and she was right. We where not going to give up. The following day I rung Burnley general and asked to be transferred to St Marys university hospital to the neonatal unit I’d been researching.

We where given an appointment the following week, so from that day to the appointment I must of read every bit of literature on CDH to prepare myself talk to the doctors just so I knew the different terms they would use and questions I needed to ask as well. I looked not only in England at medical research reports and websites but in America, Germany, Canada, Sweden, and China, I had to translate them to English then I’d sit up reading them at night.

It took me hours of no sleep and weeks of reading but To my absolute surprise I found an operation that was being done to babies during pregnancy, this happened while the babies where still inside the mothers. I then took that information and tried to find a hospital or doctor in England, it took a few days of looking, but I did find one. One doctor in the all of England and the operation was still in research phase an also wasn’t available outside of London. But this gave us hope an something to look into more. I now had an aim, I had some knowledge to take with me to Manchester and ask some questions.

On the day of the appointment we left the house and we didn’t really speak in the car we just held hands while I drove, we had no idea what we where going to find out an what was going to happen. We checked in at reception and was told to follow the receptionist to 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 of happened to us. He is the head of his department and the help he gave us as a family and also the lengths he went to was unbelievable. Dr Chibuike Iruloh was a Consultant Obstetrician, and he is a Sub-specialist in Maternal and Fetal Medicine. He called us in to the scan room and talked to us about what he was going to do.
He made Lou feel at ease which was brilliant. I had not seen her so calm in weeks. He started the full body scan of Thomas and took every measurement of how big he was right down to his hands and feet. He then looked at Thomas’s chest and stomach it took nearly an hour till he had finished, he then asked us to wait in a personal waiting room while he wrote a report.

It took him no time at all, he came to the room we where in, knocked on the door and asked if he was ok to come in. 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 after being told at Burnley he wouldn’t make full term.

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 smile and told us we where 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 and we where about to get up to go, So I took the chance and said to dr Iruloh “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 wanted to know more about it and I pushed for every answer he had. He had to stop me at one point and say “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 it was the things I had researched.

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”. This was the point I knew if I didn’t say what I wanted and demand it that happen, we probably not have the chance of seeing the professor down in London. I told him what I had found and if this was the only way we could improve Thomas elijah’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 fetal research centre in London, and also said the fluid around Thomas would have to be tested to check for other possible conditions Thomas may have (Amniocentesis), and we would also have to come back in 3 weeks to have it done. We left feeling a little bit more hopeful and knowing that Thomas had gone from 0% to 30% survival made gave us something to fight for. I knew 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 asking for cancelled appointments. it took over 20 calls and 3 day but I got one for the follow monday. Lou was so relieved we didn’t have to wait.

Monday morning came and it was back to the st marys hospital in Manchester to see Dr Iruloh again. We where 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 Amniocentesis procedure and the risks involved to both louise and Thomas. I was so proud of louise, if it was me I’d run out the room knowing what was about to happen. 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 where put in a room for lou to recover due to the increased risk of her waters breaking and miscarrying Thomas. Later that day we where 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 i just remember it being 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 and can never repay him for what he did. True to his word Dr Iruloh got us in for the appointment in London. We where on our way. The time we waited killed us, but the day eventually came. we set off the day before and stop with A good friend in Kent for the night. At 7am the next day we set off to the appointment. We checked in at reception he and waited to be called, 10 minutes later I looked up to see Dr Iruloh at the desk, we where shocked but thought he was there for some other reason. he then turn around and spotted us an came over to sit down. He had traveled down to London to be with us and help us in the appointment, he took time out for us and for Thomas which we where overwhelmed about. We where 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 the room, us and also Dr Iruloh who told them everything about Thomas.

The doctors scanned lou for about 20 minutes an they 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. They where 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 an due to that had pushed his heart into the right side stopping his right lung from growing we where told he also had ventricular septal defect (VSD) a small hole in between the chambers of his heart. This meant that he would be able to have the surgery he needed.

That was the first time I let lou see me cry. we where devastated everything we had done for the past 3 months had lead up to this day, and to get there only for them to tell us no was heartbreaking. Within 2 hours of being at kings fetal research thomas was put in the server category with a 10% chance of survival.
We where 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. Dr Iruloh explained what the doctor meant to lou and after he had finished I just hugged her. We had done it, The research was all worth it we finally reached the goal.

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 an 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 was the one I had found in England to do the research this was the man the all those weeks of research had found. 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 cause 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 there stomach an into her fluid around Thomas. He then put a 2mm needle into the 3mm needle an 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 an we all watched the screen we got to see his face for the first time, his nose, eyes an eye lashes, lips and 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 professor 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. with in a 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 thank everyone at the centre and Dr Iruloh to and left to find a hotel to stay at. The following day we had a drive out into London then set off Home. For the following 3 weeks we had appointment at st marys with Dr Iruloh lou was drained 2 more times to stop her going into labour she was so brave it hurt her so much but she did it for Thomas.
On the 4th week we where back in London for a month till the balloon came out week had weekly appointments at the centre lou needed to be drained 2 more times again and she took it all in her stride. 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 was doing things right, but she couldn’t of done anything better.

The last visit to the fetal research centre was when she was 34 weeks gone. We got to the the centre checked in and waited to see the professor, we when to the ultrasound round and the professor was waiting for us he did a scan and we where put in a private room for lou to had 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 the 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 on 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 the wasn’t to be.

I was woken up at 4:30am on March 9th to lou telling me her waters had broke, she was so calm I run about not knowing what to do stuffing random things in a bag, till she told me to calm down. I striped the bed and got lou changed, And i phoned st marys and told them we where coming in. The birth plan was in place Thomas was a good weight and all we want 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 where put on antibiotics to stop anything arising. We where 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 in labour for hours, Until Dr iruloh came in told told them to get Thomas out. We where told when Thomas came we wouldn’t be able to hold him and he would have to go straight to NICU.

Thomas Elijah Lang was born Tuesday 20th March at 14:16pm and to are 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 out side the room and as soon as Thomas was born was in there with lou just so she had someone with her, I couldn’t leave her on her own.
When we got to the ward there was a team on stand by waiting to help him and make him comfortable, about 10 in total. 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 will 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 hugs and introduce her as Thomas’s main carer.

I stayed as long as I could but i had to leave the room for a minute to get my self straight. Thomas was put to sleep and I held his little hand for hours, i had an instant bond with him, the love I feel for him now is amazing.

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 wanted lou to see Thomas she needed to be with him all we both wanted was to get back to our boy, because she had been cut in 3 different place and needed a lot of stitches so she couldn’t barely walk but that didn’t stop her.

I walked her down to NICU, I had to warned her about all the wires and tubes that he had but I don’t think anything could ever prepare you for seeing your baby like that. She was in bits but lou stayed there holding his little hand as long as she could. She where shattered so I took her back to her room after an hour for her to recover and get some sleep. I went back to Thomas and sat with him. I was told at 8pm to get both our family’s to come over to be with Thomas as he wasn’t well.
I rung my family, louise’s family and also his god parents. I asked for a priest to come to see Thomas and We had Thomas christened with our parents and family around him and one of his godfathers, he was also blessed which was beautiful. His stats stabilised and I held his hand till I fell asleep. Thomas’s 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 past away on Wednesday 21st 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 holding 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 the he said his last goodbye. He then hugged us both and left the room upset, he was with Thomas from start to the end.

Throughout the all 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.

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 with how hard we pushed to get the surgery and the research put in to get us there will be passed to other parents with babies like Thomas Elijah. I have already helped a few families with information about the condition, after they have seen Thomas’s story and the research I did for it. I have also done some research for a family with an unborn baby that reached out to us when Thomas wasn’t born. The baby had congenital heart defect (CHD) unfortunately the little angel didn’t make full term. I will carry on helping anybody that needs me, and if I can bring comfort to any other families in our journey we faced I will do it. I don’t want anybody to feel the way we felt.

 

What others have said:

“He always wanted a child. At the 20 week scan we found out Thomas had a condition called Congenital diaphragmatic hernia (CDH). From that day Adam was my absolute rock. Adam listened to everything they said, while I didn’t really understand. He talked me through everything and he never gave up, no matter what they said. The midwife came in and said we need to get to the ward immediately. We ran back to the ward and as soon as we walked into the room Thomas passed away. We got to spend the full day with him and night to wash him, kiss him, cuddle him, sing to him and spend some family time together. He truly is the best father and partner me and Thomas could ask for.”