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My Plea:

My journey first began on the 16th of August 2017 when I found out I was pregnant. I was absolutely over the moon, as my partner Adam was. I had to ring him whilst he was at work, to which his response was running around to everyone shouting with happiness too all his work friends saying he was becoming a dad. Once we was home from work we did another pregnancy test which came back positive, I knew I was around 6 week pregnant. We told all our close friends and family until we had the 12 week scan. The 12 week scan came, everything was fine. The baby was growing fine and we had no problems. We was dying to find out what we was having so at 16 week we went for a private scan to find out. At the 16 week scan we heard his heartbeat, got a bear with this in and found out we was having a boy. We was so happy, Adam wanted a boy so much. We had gender reveals with both family’s and decided on his name. Thomas Elijah Lang. Then came out 20 week scan. We attended Blackburn hospital for what we just thought a normal check up. During the scan the midwife was taking a while and asked us to go for a walk as Thomas was led in a funny position. So we did, and returned to the room. While scanning again the midwife advised she needed to speak to another midwife to check something. The second midwife came in and started to scan. All I heard was “do you want me to tell them”. The midwife then told us our baby had a condition called CDH (Congenital Diaphragmatic Hernia).

The midwife started to explain what this was. Myself and Adam broke down. I didn’t understand what the midwife was saying all I asked was “is this dangerous for him” she explained more and it soon hit me what was happening. The lady then took us into another room to wait for a consultant to come and speak to us. 40 minute later which felt like 40 years a consultant came in. He talked us through everything but couldn’t advise us how severe the CDH was. We booked an appointment to go Burnley for a few days after. Those days were possibly some of the worst. I couldn’t look anything up online as I knew this would make me worse. Both me and Adam didn’t sleep or eat for days and we just wanted to know our baby was ok. We attended Burnley Hospital, and had our scan. We was taken into a room to which the midwife told us Thomas’s CDH was very severe and there was no chance of him making it through birth or the full labour. My heart absolutely shattered and my world came crashing down. The midwife spent a hour or so with me and Adam advising what the next steps were to take. She gave us two options. 1. We have an abortion. 2. We carry on with the pregnancy and we are then to be seen at the best hospital possible. St.Marys.

The midwife said she would give us a few days to discuss this. Myself and Adam instantly said we wanted to go St.Marys and there was no discussion about an abortion. We was then given an appointment at St.Marys Manchester. We attended the appointment with such sadness and no hope of what we was about to hear. We got called through by a gentleman called Dr.Iruloh. He advised us we was supposed to have another doctor but they had to attend another hospital (to which we are now so grateful we had Dr.Iruloh). The doctor scanned myself and Thomas for a good hour. No words were spoken. Myself and Adam just sat holding hands praying Thomas would be ok. After the scan Dr.Iurloh spent 15 minute going through the scan and entered back in the room. He explained to us that Thomas’s change of survival was 30%. This is classed as moderate. We was over the moon. A few days ago we was told there was no survival rate and now there is 30%. We went through everything with the Dr and he explained what could and probably would happen after labour. The meeting then finished. Adam said he had one last question to ask and that was about a operation myself and Thomas could have called FETO. Adam had been up for hours on end researching this condition and what we could do while Thomas was still inside. The surgery is not offered on the NHS, and is only offered in London in the UK as it is still the research progress. Dr.Iruloh laughed and said “I can see you have done your research”.

And he had. We would have walked the earth to help our baby.

Adam started asking questions, to which the doctor actually had to go and research as he didn’t know everything about this surgery. Adam on the other hand did. The doctor came back and advised us that he will contact Kings College in London to ask for an appointment to see us. He was in contact with the professor who did the surgery and he said he would help us in any way he could. A few week after we had confirmation that the professor would see us to see if we could have the FETO surgery done. We thought this wouldn’t happen as only one couple from Manchester had been for the FETO and unfortunately got refused. A few week past and we had a phone call to say the professor has accepted us to go for an appointment which they would decide if we could have the surgery or not. We were beyond happy. The one thing that could save our baby and we was that bit closer to doing this. Beforehand I had to have a amniocentesis at the hospital to check if Thomas had Down-syndrome, Edwards syndrome or Patau. The needle was huge. That’s all I know. I am absolutely petrified of needles and surgery but nothing mattered. I didn’t question this once. So the results came back, they were all clear. Another step forward. I called Adam as he was working away and we both just cried. Everything was looking positive. Around came our appointment at Kings College, London. We attended the hospital and anxiously waited in reception. 5 minute after sitting down we saw Dr.Iruloh. We said hi to him and asked him what he was doing at the hospital. His response was “I have come too see you both and see how they test and do the surgery”. We couldn’t believe it. The doctor has travelled from Manchester all the way to London too support us and learn about FETO. The Dr asked if he would join us in the room and we were delighted for him too. The scan began, the doctor at London went through everything with Dr.Iruloh about Thomas and the condition.

After the scan the midwife sat us down and told us the heartbreaking news that the previous percentage of Thomas’s survival rate was incorrect and Thomas’s only had a 20% of survival which is now classed as severe. They also noticed a problem with Thomas’s heart so we we had to have a scan with the heart specialist. We did so, and we got the devastating news that Thomas had VSD. A hole in his heart. The specialist advised that the hole was only severe 2 out of 10 but meant the professor probably wouldn’t do the surgery as there was another problem. We were asked to wait in the other room while they spoke with the professor. A couple of minutes later the doctor came to us and said “the professor is willing to do the FETO, at random not part of the research”. We was so happy, we both cried and just hugged each other. The doctor then advised us that because Thomas’s condition was now serve he would have to do the surgery today. My whole body went numb. I couldn’t believe that in an hour I was about to have this very rare surgery. We filled out all the forms and got all my bloods done. We waiting very anxious for 2 hours, then got called in the room. Professor Kyprianos Nicolaides entered 10 minute later with “The big boss is here”. We all laughed and it put me at ease so much. The professor then started to scan and ask questions about Thomas’s and what had been happening. Once he had scanned and checked how Thomas’s was led, he then put him to sleep. My stubborn baby only took 20 minute to get to sleep. Once Thomas was asleep he started the surgery. Adam was sat right behind me aswell as Dr.Iruloh. A needle was placed into my stomach and then a camera so they could position the balloon. FETO surgery is done by placing a balloon in the baby’s trachea to prevent fluid escaping which will help the lungs to develop.

The surgery lasted no longer than an hour. The surgery went great. It probably hurt but I felt no pain, just love for Thomas and knowing we was helping him. We was told to come back to London in 3 week. The professor advised if I went into labour beforehand that Thomas would not make it through labour due to the balloon and that he was be too premature to survive. That night we was told to stay in London incase I went into labour (there is a percentage of this happening with the FETO surgery as needles are put inside and can break your waters). We stayed in London, I was told Thomas’s would be asleep for 24 hours. The little monster woke me up at 5am kicking. Everything was good. We drove home the following day. We carried on with everyday life he best we could. 3 week later we drove back to London for our first appointment of 3. We stayed in London for the following 3 week. The first appointment went well. I wasn’t showing any signs of labour and Thomas was doing good. They did say they was struggling to see the balloon but after advised it was there. 2nd appointment went ok. Again the doctor advised it was hard to see the balloon inside. 3rd came for the reverse surgery to take the balloon out. We had the scan before the professor came and was told the news that the surgery had not working. Thomas’s has grown that much in the week that the balloon had been pushed out and it hadn’t worked the way it could have. We were heartbroken. The professor came in and scanned us. He advised there was no balloon there to take out. The professor sat with us and just said sorry. This had come out and was now in my stomach which would come out during labour.

I was so upset. Thomas’s still had a 20% chance of survival. Dr.Iruloh entered the room as soon as the professor had finished. He wanted to be there for this but he had travel problems. We all sat there devastated but we carried on. We drove home that night from London. The week after we had an appointment in Manchester with Dr.Iruloh. We had a scan and then was took into a room with a consultant to go through labour plans. He talked us through everything and what could happen and the next steps. The next thing was to plan a day I was to be induced. Adam and Dr.Iruloh sat together to decide a day. Adam wanted Thomas’s to be in as long as possible so wanted 39 week. Dr.Irlouh wanted Thomas here at the safest time and as soon as possible, so 37 week. Dr.Iruloh knew Adams determination and they agreed 38 week together. I came home and had a date for my induction.

Two days later I woke up to which my waters had broke. I woke adam up and told him. Adam panicked (a lot) while I stayed calm. We drove to St.Marys where they scanned and tested (won’t go into much detail) but advised I wasn’t in labour at all. They took us to a hospital bed to stay until we knew what was happened next. Adam was very tired (lol) so I asked if they could let him sleep somewhere. So they gave us a private room. The doctors discussed that they couldn’t let me waters break for more than 48 hours for risk of infection but Thomas was only 35 week. Bringing him on at 35 week would be dangerous. They came back and said they would prevent the induction until he was 37 week-19th Match and give me tablets to stop infection. 10 days I sat in hospital. Adam had to go to work to keep is going but visited me every night along side family and friends during the day.

These days were probably some of the best days of my life. I got to spend time with Thomas’s while he was still safe and got to eat lots of food (lol). On the 19th of March the doctors came in and advised I would be getting induced at 5pm. At 8pm the midwife came to induce me. To my delight I was already 2cm dilated. Labour was the best experience of my life. Thomas Elijah Lang was born on the 20th of March 2018 at 14.16pm. I got to hold Thomas as soon as he was born which was the best few seconds of my life. They doctors had previously advised I wouldn’t be able to hold him as he’ll be taken straight to NICU. Thomas was taken straight to NICU. His oxygen levels were low. 76%. We sat by Thomas, spoke to him, prayed for him and just wanted him to know he was the best thing that ever happened to us.

Thomas’s stats stayed the same but we knew this hasn’t enough to keep him going. Later on in the night a consultant took us into a room to tell us that Thomas wasn’t doing well and it is getting to much for him. All I remember is Adam saying how do we make him peaceful. We called all our family to come to the hospital so we could have Thomas christened. We had him christened and it was beautiful. After the family went we was told to go to sleep. I hadn’t slept in about 3 days. They said they would call us if there is any problems. At around 4am Adam had a call. Thomas’s stats had gone down to 40%. Adam went straight to Thomas and sat with him. The doctor told adam he had to come and get me as things were not looking good and we needed to make a decision.

Adam came back to the room and within a minute a midwife came running in saying we need to get back to NICU. We ran back down and walked into the room where our little boy sadly passed away on the 21st of March at 7.41am. Adam asked for everything to be taken off Thomas and for him to be put in a blanket. We took him to a room called the snowdrop suite. This was like a little bedroom with a bathroom. We got to spend the night with Thomas. We cuddled him, sang to him, kissed him and spent the night holding him. Our family and close friends came over to say goodbye to our boy before the next day when me and Adam had some alone time with Thomas.

Time we will never forget.

Thomas’s is truly the greatest achievement of my life and I will continue to love and miss him until we meet again.
Myself and Adam are also raising money for the NICU at St.Marys Manchester for other little babies like our Thomas. We raised around £2000 at the funeral and we are holding a black tie event on the 6th of October in memory of Thomas. Thank you for reading my story.

What others have said:

“She was in labour for 14 hours and Thomas was born. She held him for 10seconds before the doctors took him away to NICU. We were told to contact the family and tell them that he was very ill and may not make it. We had Thomas Elijah’s funeral a week later and raised £1800 for the NICU in Manchester which made Louise feel a little better. She has now thrown herself in to doing a black tie charity night in memory of Thomas. Thomas Elijah Lang was born on 20/03/18 and Louise has done all this in 5 weeks. She truly is the most beautiful, kind, caring mother I’ve ever known. She has sacrificed her body and given everything for myself and Thomas to make us a family.”