Hi, I hope it is ok to post this here. Thanks for reading x
Hello everyone, this is Anthony's story. I will try to keep it brief!
If you are bored at any point, p
lease scroll to the bottom where the important stuff is!
I had a normal pregnancy with normal scan results and my waters broke at 39+4 but there were no contractions. 18 hours passed and still nothing so I cried buckets because I couldn't go to Corbar. Macclesfield were brilliant and I opted to wait a maximum of 96 hours to get the baby out. Anthony was born 95 hours 54 mi
nutes later in poor condition, thought to have pneumonia from the long-broken waters. He went to SCBU while I waited for a transfer to Liverpool, which has more capacity for long-term special care.
Ant left SCBU after two weeks but his chest xrays still didn't look right. After a battery of unpleasant tests and a CT scan, they told us he had a Congenital Diaphragmatic Hernia. I later found out this literally means "born with a hole in the diaphragm" and is a potentially fatal defect allows organs to move into the chest cavity, preventing the lungs from growing properly. At 5 weeks old, he underwent a 5 hour operation at Alder Hey. We later discovered he was Mr Jones' biggest case. Mr Jones repaired the hole in the diaphragm, separated his liver, right lung and kidney, which were all fused, and put them back in place, untwisted his bowel then removed the appendix which ended up in the wrong place, to prevent confusion in later life. He tried to save a section of Anthony's lower right lung, which had died, and an extra artery that Anthony had grown to supply it with blood. During the operation, Anthony bled from his nose and mouth and was critical. He was given a blood transfusion and the team were surprised and delighted that they managed to bring him back. It has taken me years to be able to say that to anyone. He spent 24 nervewracking hours in Intensive Care. We didn't want to leave him that night but his nurse said she would ring if anything "happened". It was so frightening that we didn't even take pictures.
The reason I am appealing to members of this group for help is that it is incredibly difficult to interest my friends and get them to help spread awareness. I am hurt and upset every day when I PM them, asking them to share a petition, for example, and they ignore me but then manage to share jokes and silly photos.
CDH has left a scar on my son's body and a scar on my soul. It has affected me psychologically, socially, financially and caused marital disharmony. As for Anthony, he has got away "lightly" with a small right lung, small pulmonary artery, a developmental delay affecting the way he interacts with others and his speech. At nearly 4, he is at about the level of a two year old or younger. In fact, he speaks a lot but it isn't communication. He needs 1:1 help at St Peter's Preschool, who have been fabulous, and a Statement of Special Needs is in the pipeline. Most importantly of all, we accept him as he is, relish each day, never, ever forget our medical team and acknowledge what a precious gift his life is.
In fact, CDH is NOT rare and 50% of affected newborns die. The tragedy is that CDH is as common as Cystic Fibrosis and Spina Bifida, but nobody has heard of CDH, treatment is patchy and there is little research.
It hadn't occurred to me to talk about CDH until now. I can think of 1000 ways I would like to spend my time rather than jumping up and down and screaming, trying to get people to help me.....but I need to raise awareness of CDH. Without awareness, people don't understand the importance of sharing this information far and wide. Without sharing far and wide, with everybody you know, we aren't going to get those crucial 100,000 signatures of the epetition asking for research and more babies will lose their fight. Last week I heard of 8 newborns who died. 8 families whose lives are shattered forever.
I know your time is precious but I would be so grateful if you would do the following:
- watch this CDH awareness film. You can miss this out but I have found friends have a greater understanding of the importance of sharing the petition and encouraging others to sign if they have watched
Anthony is in it! If this one seems too long, there are plenty on youtube under "CDH awareness"
2) please sign this petition:
epetitions.direct.gov.uk/petitions/33898
If you are still reading, then you are really very kind indeed. This means a lot to me [♥]
3) It would really make me happy (and all this effort worthwhile) if I could see that lots of people have shared this story. I have spent a long time writing this and my husband is going to ask why the house isn't tidy, washing isn't done etc.
Please cut and paste this story into your status/email/Twitter to share with friends, raise more awareness and, the ultimate aim, to achieve those 100,000 signatures.
Thank you all for reading. xx
PS. If you don't know how to cut and paste, don't be afraid of asking someone to help you x