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Finlay James Johnson

Our precious little boy Finlay James was welcomed into the world on 9th December 2009 weighing 6lb
9oz, sadly our brave little soldier grew his wings on the 17th December 2009. Finlay was born with an isolated left sided Congenital Diaphragmatic Hernia (CDH) which meant that his little lungs were not able to form properly and therefore they were not able to support him when he was born.
My partner Ricky and I will never forget the day that our precious little boy was diagnosed with this devastating condition. We arrived at the Hull Royal Infirmary for our 20 week scan bursting at the seams with excitement; little did we know that our lives were to be changed forever. It wasn’t until the scan was nearly over that she said that she couldn’t get a good view of Finlay’s heart so she told me to go have a walk around for 10 minutes to see if he would change position. When we went back in the room after 10 minutes the head sonographer was in there and took over scanning me, it was at that point I knew something was wrong. As they spoke between themselves my heart began to race, finally I blurted out “what’s wrong?” As soon as the sonographer said those three words Congenital Diaphragmatic Hernia our whole world crumbled in front of our eyes. What did this mean? So many questions, but nothing would come out, it felt like everything had come to a stand still. We left the hospital numb, no words to describe the feelings we felt

I rang my mum straight away and she didn’t waste a second, she was on the internet constantly; researching everything she possibly could. When I got home I was so upset and confused I didn’t have a clue what any of this meant so I decided to have a look on the internet myself, which I regretted. Ricky and I had to go see the consultant on the following Monday, so we were left over the weekend with so many unanswered questions. We were both so frightened.

After a weekend in limbo we went to see Dr Coady (consultant Radiologist) who was the loveliest person ever! She explained everything and checked Finlay again to make sure the sonographer had got it right. We were obviously hoping that there had been a mistake, but there wasn’t and Finlay did have a left sided hernia. Dr Coady went on to tell us that it was 50/50 on whether or not he would survive and we were told there and then that even if he survived and made it to his corrective surgery that he could have serious problems as a child. We were also told that Finlay would have to be delivered at the Leeds General Infirmary, rather than Hull, as it was better equiped and had more experience of babies with CDH. We were all devastated, Why us? Why Finlay? It was one of the worst days of my entire life. After that we were going to and from hospital for scans, meetings with the medical professionals and general checkups. Seeing other mums to be broke my heart, because I knew that they would walk out of hospital holding their babies in their arms, and deep in the pit of my stomach I knew that I would never get the chance to take Finlay home.

Weeks flew by and my bump continued to grow, Finlay refused to let me sleep! He seemed so content and active inside me. I found it hard to believe that he only had 50% chance of survival. Dr Coady had asked if we would let the Royal Hallamshire hospital do a study on Finlay whilst in utero and the outcome after birth. Ricky and I decided that if it would help in some way to get to the bottom of this devastating condition then we would do everything we possibly could. So we were sent to Sheffield for two MRI scans one at 24 weeks and one at 34 weeks. The first scan was ok and we were told that although this condition was serious Finlay was probably in the mild to moderate category, which gave us some hope. We drove home from Sheffield in fairly high spirits. At 34 weeks the second MRI scan wasn’t so good they said Finlay’s lung volumes were extremely low and to be honest they didn’t have much hope. After that we all tried our best to keep plodding on; it was inevitable Finlay was going to be born and he was either going to survive or he wasn’t. I knew, I tried my best to hang on to that glimmer of hope but I was carrying him and call it motherly instinct, but I just knew he wasn’t going to make it. So I held on to every single day I had with him even though he was a little human being bundled up inside me, Ricky and I formed an incredible bond with him.

Nearing the end of my pregnancy I was diagnosed with Polyhydramnious, which is basically excess fluid around baby. This meant that I had to have more regular checkups and scans and I was kept a close eye on by my wonderful consultant Dr Coady.  Finally after 20 long agonising weeks I was given an induction date.
I had to be induced early so that a full medical team were ready on standby for the arrival our precious little boy. On the 07/12/2009 we made our way to the Leeds General Infirmary, I was overwhelmed with fear, excitement and anxiety. On the 08/12/2009 my waters broke on their own and all we had to do now was wait. My Dad’s birthday was the next day and we all knew that Finlay was destined to have the same birthday as his Grandad Tony! Labour progressed and by the time we
knew it I was ready to push, but Finlay had other ideas! He decided he didn’t want to come out without a fuss so raised his little hand above his head and got himself wedged in my pelvis! So plan B, emergency C-section and off I went into theatre. Ricky and my mum were both dressed in their blues; we were all overcome with emotion. Then a loud scream came from this little thing held up in the air, We were all a little shocked at his cry because we were told that he may not be able to cry due of the size of his little lungs.

Finally after 9 long months our little fella arrived by emergency C-section! His beady eyes peered at us wondering what the hell was going on.
He was whisked away and intubated straight away. As they took him to the Neonatal intensive care unit they wheeled him past me, his beautiful little eyes looking straight at me; that was the last time I saw Finlay with his eyes open. After a few hours, one of the Doctor’s came to tell us that Finlay was stable on a conventional ventilator and he was only needing 60% oxygen. He told us that they were all surprised because they weren’t anticipating him doing so well, my mum burst into tears we were so relieved.
I finally got to see our precious son 6 hours later hooked up to machines, tubes everywhere, a very different baby to what I had seen only hours ago. He was paralysed by drugs, I was so scared and I didn’t want him to feel any pain. The lovely nurses assured me that he was perfectly comfortable. “Such a brave boy” I told him, His daddy and I were so proud. We tried to be by his side 24/7, but because id had a c-section I found it difficult to stand up. I was so annoyed with myself for being tired and in pain, because all I wanted to do was stand there day and night to hold his hand!  Within a few hours of his birth, Finlay deteriorated and they had to put him on a High Frequency oscillator (HFOV) an give him Inhaled Nitric Oxide therapy (iNO therapy), as he wasn’t coping as well as he was previously on the conventional ventilator

We were beside ourselves, the days passed and Finlay was up and down it really was like a rollercoaster ride. Three times we were told to call our loved ones in to say goodbye to Finlay because they didn’t think he was going to make it through the night, but Finlay proved them all wrong and carried on battling for as long as he could! We took the decision to have him christened by the Hospital chaplain (a lovely man named Adam), we asked our family and friends to attend. This was a very emotional time for everyone and I got christened alongside my beautiful baby boy, which gave me an inner peace that I can’t describe.

He was visited by so many people who loved him and cared for him, he was in high demand for such a small person! Our brave little man surprised us all and put up a fight, he battled for 8 days until finally he just couldn’t do it anymore. Ricky and I had to make the hardest decision of our lives, Finlay had tried his hardest, but his little lungs just could not cope, we had to turn off his machines. That day his saturation levels dipped really low and they didn’t pick back up at all, we knew it was a sign from him that he was tired and had just had enough. He was so gorgeous in every possible way.
Finlay fell asleep in mine and his Daddy’s arms where he belonged. Now with the rest of the stars Finlay shines bright. We love him with all our hearts and there is not a day goes by that we do not think about him.

We are the proudest parents ever and we are so thankful of those 8 days that we had with him; 8 days of our lives that we will never forget. We love and miss him so, so
much. He has changed our lives forever!

CDH is such a horrible congenital condition and I would like to thank CDH UK for helping me and my family through extremely difficult circumstances and for giving me the opportunity to tell you my story. Although my outcome was the worst possible, there are other babies who survive, given very little chance by doctors. I would be happy to speak to any other expectant or bereaved mums who are going through or who have been through what I have experienced.

“A precious flower, lent not given
to bud on earth and bloom in heaven”

We love you so much Finlay xxx