Next morning get a phone call to go straight up to Margate hospital to get scanned again, once there the room goes quiet. The women scanning me says that his heart is on the wrong side, so they just tell me he had dextrocardia and booked us a appointment for the following week at St Thomas. By this time our minds are every were. We turned up to the appointment laying there on the bed when two three Doctors walked in all looking at the screen they tell me and partner to take a seat in the room next door. We were so confused not knowing what was happening. The Doctor comes in and tells us that it is not dextrocardia and that his heart was being pushed over to the right. We were told we had to come back in a few days to find out what was happening . We turned up as nervous as can be, I laid there being scanned and the Doctor was talking away to me, so felt relaxed and like everything was ok and going to be ok. She then told us to take seat next door. By this time our heads are going round and round. The Doctor comes in and tells us that he has a congenital diaphragmatic hernia and has a 30 to 40 per cent chance of surviving due to having such a low head to lung ratio. By this time I feel numb and confused, she gave us our options; to carry on and hope for the best, to terminate pregnancy or to have a ballon put into his throat while I was pregnant, but that it came with some risks and I would have to stay near the hospital through my pregnancy, which was impossible with my other little boy; I had to do the best for my family and are baby. They told us to go home and to think about it. We new straight away we had to give him a chance; a hope for the best. We were back and forth to hospital every few weeks, our hearts were breaking. We were angry wondering why it was us and we did not deserve it; what had we done so bad and that poor baby is innocent. I felt like I had my whole pregnancy taken away from me and could not enjoy it. I did not go shopping and I hated feeling him kick, I could not get my head around the fact that he was alive and well inside me but not the case as soon as I had him. The weeks pased and I was booked to be induced on the 14th of November 2011. They told me I had to stay up there alone a week before that date incase anything happened, so all alone two hours away from home without my family and son. Only two days left; nerves start to kick in, but did not stay for long as started to get contractions and rushed to labour ward, where they told me that I was in labour. I was in such a state it, was not ment to be happening yet, it was all planned for two days time. I was all alone, and it took two hours for my partner to get there, but I was so happy to see him so we could go through this together. In the end he was born by emergency c section the next day. They took him stright away there were so many Doctors and Nurses helping him. They got him stabilised and they let me have a quick glimpse of him before they whisked him of to NICU. My partner went with them and he came back half hour later with a picture for me. It broke me that I could not be with him and I had to wait six hours before I could see him. Finally allowed to see him, I broke down as soon as I saw him; wires machines everywhere and my little baby laying there so hopeless. I knew he was in no pain and he looked fast asleep. We took things day by day. By day four he was able to be put onto conventional ventilation. Day five he was ready for his op. He got taken down at twelve (we had a seven hour wait to no what was going on), during that time we get told that we have a room in the Ronald mc Donald house, so we could bring are little boy up with us and get through this together as a family. Finally we get a call saying that he’s back and it all went well. It felt like a weight had been lifted, but knew that he had to get through the next 72 hours till we could relax. But by day by day he grew stronger. He finally opened his eyes ten days after his op and I just looked at him and cried; my baby boy was on the mend . Finally three weeks after he was born I got my first cuddle; it was one of the best moments of my life and never wanted it to end. You don’t relise how much you take everything for granted. They started to feed him but released he was struggling to breath again. They did a chest x ray, which showed them that he had a right sided chylothorax which meant the fat from milk was leaking onto his right lung ( his good lung) which caused him so much prob as his left lung was so little. They put in a chest drain to drain it away. After 28 days he camef of ventilation; we were over the moon. They decided to try him on a milk powder called monogen which had a different type of fat that went stright into the blood it seemed to work, he was taking it. They found out he had reflux, but gave him medication to help it. He was so slow with feeding and would not take a bottle. We were finally allowed to take him to a local hospital four days before Christmas . It broke my heart him being in hospital for Christmas, but deep down inside I new he would be home soon and he had beaten the odds and made it through. He all of a sudden starting to feed well so came home after 7 weeks in hospital in total. Things were going well, he had some breathing probs and he was aspirating, but we were getting through it. Weeks passed and he was doing well, then four weeks ago he stopped feeding and was losing weight, so they decided to put the ng tube back i, taught us how to do it and everything we need to know, but could come home which was great. We have also found out he has scoliosis very badly and is getting worse as he gets bigger so going back to see the Specialists at St Thomas’ to see what is happening and how it will effect him. We don’t mind what we have to deal with as he is here and that is the most important thing. He is gaining weight slowly but surely. Really wanted to share my story as this website helped me alot when I did not no what to expect and I want to show people that feel the same that there is hope, it may be hard but worth every moment x
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- committee@cdhuk.org.uk
