Our CDH journey started in August 2010 when we went for our 20 week scan. Andy and I were so excited and couldn’t wait to see our little baby! I got laid down in the scan room and looked up at the screen…there he was looking like an actual little person, it was amazing. The first thing i looked for was his heart beating which we saw straight away. From that, we were so wrapped up in looking at him, it was the best moment of our lives, but soon started to become the worst. We got to the end of the scan and the sonographer looked at me and said ‘i’ve got some really serious news’. I will never forget the look on her face when she said that. She said she could see a shadow next to the heart and it looked like it was the stomach. Andy and I just went into a state of shock and didnt know what this meant. She asked us to go for a walk for ten minutes as she couldnt get a clear picture for us as the baby was moving too much but told us to come back and she would get one and also get someone to speak to us about what she had found. Andy and I went for a walk and couldn’t believe what we had been told because everything looked fine to us. We went back ten minutes later and the sonographer scanned me again at which point she started crying!! This really worried me so i asked why she was crying. She said her friends baby had a condition called CDH so it reminded her of that. I asked if her friends baby survived and she said yes but only because she was very lucky. At this point Andy and I just started crying. Another two women came in and told us that it looked like our baby had CDH and had a very slim chance of survivng and offered me a termination!! I couldnt believe what i was hearing as just minutes before, all i had to think about was seeing my perfect baby. They then offered to send us to Leeds General Infirmary to have it all confirmed and to take it from there. I told them this is what i wanted to do as there was no way i was giving up on my little baby.
Four long days later we went to see Dr Glanville and Leeds and she confirmed that our baby had left sided CDH. She told us he had between 20 and 30% chance of surviving. To me that was a lot as four days earlier we were told it was a very slim chance, so 30% to me seemed better than we originally thought. We told her we were going to continue with the pregnancy and give him every chance possible and i never had to think about that decision for one second. We had some tests to see if there were any other problems and they all came back fine which was a big relief.
We had to go for a scan every four weeks to see how he was doing. We were asked if we wanted to take part in a study for Sheffield University so in October we went for an MRI scan which gave us some bad news. The hernia had also moved on to the right side as well as the left. The Dr could see part of the Left lung had formed but couldn’t see the right one at all. We knew this was bad and she said that our baby was at the poorer end of the scale for babies with CDH. This broke our hearts because we didnt want him to have even less chance of getting through this than what he already had.
Throughout my whole pregnancy, not once did i give up on my little boy and never ever thought i was going to lose him. I always tried my hardest to stay positive for him and for me but when we heard things like this it was so hard and it broke my heart.
It finally came to 21st December 2010 which was my last scan with Dr Glanville, i took my twin sister with us as she was going to be my other birthing partner. She told us that Brody had stopped growing now and that his stomach was measuring smaller than what it should be so now there was no benefit to him staying inside me any longer, even though my due date wasnt until 2nd January. We decided that I would be induced after christmas.
New years eve came round and we got the call to go in to be induced. We were so excited but really scared at the same time. My waters were broke at 12.30 in the afternoon on new years day and Brody was finally born at 6.55pm that night. I remember seeing him when he first came out and he looked like he wanted to cry! This scared me but a second later one of the doctors rushed him over to a bed in the corner where they put the tube down his throat and got him stabalized to take him to ICU. They brought him over for us to look at him for a second then he was rushed off but before they left the consultant told us she was extremely worried about his oxygen levels.
About an hour later were were told that they had stabalized him and we could go and see him. Andy pushed me round to ICU in the wheelchair and my sister came in with us too and we got to see our little boy. He had his eyes wide open which i wasnt expecting because he was heavily sedated but he looked so perfect and it just brought such emotion seeing him looking at us. We got to spend 5 minutes with him then we had to leave whilst they took him for an ultrasound to see what his lungs were like. We waited in a room for about an hour then the consultant came back and took us to another room for a chat. I knew this was serious. We sat down and she told us that Brody had very little lung tissue but had also got an air leak so they needed to put a drain in asap. His oxygen levels were still extremely low so they needed to do the procedure straight away as this could help. Obviously we said yes to them doing the procedure. We went back up to my room and waited for some news. The consultant came up about an hour or so later and said the procedure had gone well and that his oxygen levels had gone up which was good news. She said she would just go make sure he was settled and then we could go spend some proper time with him. At this point i told my sister and my dad to go home and get some rest as my sister had been there all day. They left and Andy and I fell asleep.
An hour later i woke up in a huge panic because the consultant said she was only going to make sure he was settled and would ring us to go down and see him but it had been over an hour…..i knew at this point that we had been waiting too long and something must be wrong.
We finally got a call at 2am to go see him and as soon as we got to ICU the consultant came out to us and said that Brody had deteriorated. They had tried everything but couldnt get his oxygen levels up. We didnt even need to ask what this meant as we knew this was it. We went in and saw Brody and just burst into tears. We were absolutely devastated. We knew then that we had to make the most of the time we had left with him so we called our parents and sisters and told them to get there straight away. When they arrived we had to tell them that Brody only had a few hours left. Everyone was devastated.
After a couple of hours the nurse asked if i wanted to hold Brody. I couldnt believe i was actually aloud to hold my little boy! Andy and I were then left alone to spend some quality time with our son. They put him in my arms really gently because there were tubes everywhere. I will never ever forget that moment for the rest of my life. I held him really close to me and told him how much i loved him. Andy then got to hold him and spent some time alone with him. Those hours were so precious to us both. Everyone then came back in to say their goodbyes which was so heart breaking. It was then just Andy, me and Brody.
We knew that we then had to do the hardest thing we will ever do in our lives. The machines were turned off and I held Brody in my arms.
Brody grew his wings just twelve hours after being born.
Those 12 hours that we had with Brody were the most precious hours of our lives and we will never ever forget them.
We love him so much and our hearts are broken from the pain but Brody will be in our hearts forever and there isn’t a second that goes by that we dont think about him.
Cherubs is absolutely amazing and I have had so much support from people I have spoke to through this charity. Both Beverley Power and Jenna Hilton have been a huge help to me and i hope i can help raise awareness of CDH.
If there are any mothers going through what i have and want someone to talk to my name is Gemma Waite and i am always here to try and support you in a way that people have supported me.
We love you Brody, so so much xxxxxxxx
