10 entries
 Name: Zillablog E-mail:
 Website: www Date: 03 Sep 10 10:49am |
Great work! It very impressive. Your web site is helpful. All the best! |
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Name: Richard E-mail:
Website: n/a Date: 23 Aug 10 10:18pm |
Hi Sarah & Andrea, We found that the medical staff don't really want to talk about Anencephaly, why? I don't know. What I do know is that it affects 1 in 1000 babies born, which when you consider how many babies are born everyday is quite common. With this in mind why does the NHS not have a leaflet containing correct information available for parents going through this? This is the reason we have a donate button on this website, because we want to publish a leaflet with knowledgeable information for parents to be. Once we have raised enough we will get them published and try to get them into all NHS authorities. We don't expect them to have them in the leaflet racks on the wall in the waiting rooms, but we will expect them to have them to hand when needed. Please bear with us as it is only with peoples help that we will be able to do this. We are so glad that this website is able to help you through this tough time, it has helped us knowing that we are helping others. Regards Richard Goodenough |
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Name: Sarah Powell E-mail:
Website: n/a Date: 18 Aug 10 11:34pm |
hello all..... i have joined because my 18yr old daughter went for her 12 week scan on Monday and was told her baby has Anencephaly.......well actually she wasn't given a name for it she was just told that the babies skull hadn't formed properly so would not survive.....it was only when she contacted someone at the hospital yesterday that she was told that the baby had Anencephaly ....this is something we had never ever heard of so obviously did a lot of googling and found this site...... my very brave daughter and her boyfriend made the decision to end her pregnancy early...she has just come out of hospital tonight. i think that more information should be given to parents whose babies have Anencephaly as she has had conflicting information over the last 2 days from different medical staff. they are both very brave and i am extremely proud of them both and how they are coping....she has told all her friends and told them to google the condition as she wants people to be aware of it and to understand the decision her and her boyfriend made........ |
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Name: Andrea E-mail:
Website: n/a Date: 11 Aug 10 10:49am |
I have been toying with the idea should I shouldn't I write something on here. All I would like to say is this website is fantastic. I like many of you have gone through the terrible loss of a baby with Anecephaly. I was 12 weeks pregnant when the Scan detected a problem. My Husband & I were heartbroken. We had never heard of this condition & I don't think a lot of General Practitioners give out information to make people aware that something like Anencephaly could happen. As it is only early days for me I still feel like a dark cloud is hanging over me, but hopefully in time I can go on to try for another baby. I would just like to say 'Thank You' for a UK Based site with lots of Information xx |
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Name: Janine E-mail:
Website: n/a Date: 06 Jun 10 07:20pm |
i believe your website will help alot of couples goi ng through such a difficult time i was unaware of the condition at the time and me and my husband were both shocked by this. its nice in a sence to be able to talk to people who understand and not to judge. we luckily went on to have a healthy son who is now ten years old but our son gary is always with us and i am proud to be his mummy |
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Name: Jade E-mail:
Website: n/a Date: 04 Jun 10 07:15pm |
Hello again Richard, the only information I know is that once you have one anancephelic child the chances of having another can be strong in some cases, taking folic acid tablets 3 months before getting pregnant and the first 3 months of pregnancy reduces anyones chances to 1%. These tablets can only be prescribed by a doctor as the amount of folic acid in each tablet is 500mg rather then most counter tablets are 50-100mg. It's definatly worth talking this through with a doctor or midwife before trying for another baby, I was told by my midwife after charley was born that if I had taken folic acid before then there would be a very very good chance charley would have been a normal healthy baby, not only is unprotected sex risky with STD's ect but also people could be putting there babies at risk at getting some kind of nueral tube defect such as anancephaly or spina bifida Wich are both linked. People aren't aware of this, well I certaintly wasn't. I hope this has helped a little. |
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Name: Richard E-mail:
Website: www Date: 03 Jun 10 11:13pm |
Hi Janine, It is for this very reason we started this site, we felt so so alone. Nobody we knew had heard of Anencephaly and no uk based website with correct information - we had to do something, and this is what we created. We are so glad it is able to help you all Richard Goodenough |
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Name: Janine E-mail:
Website: n/a Date: 03 Jun 10 10:57pm |
i was very pleased to have found your website i to lost a little boy to anencephaly and was totally devastasted i was given very little support my son gary wouid of been nearly 12 years old i know feel i am not alone in this |
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Name: Richard E-mail:
Website: www Date: 03 Jun 10 10:40pm |
Hi Jade, I am sorry to hear that you had to go through all of that on your own, with no info or help from the nursing team. As you, we we're taken into a room told anencephalic and termination in the same sentence, then given 5 minutes to make our mind up. We decided to go full term and during that time we scoured the internet for as much info as possible and found that everything was American or European but nothing based in and for the UK. For this reason and to keep us going we decided to set up a website for people like us and you. I am just so sorry we we're not here for you when it happened to you. I am so glad you have managed to turn things around and for the experience to make you a stronger person. If there is anything that you feel the website is missing, please email me with your suggestions and we will try to include it within the site so that we may continue to help others. I say try purely because I am very new to this web design which is why I've not worked out how to integrate all of the pages correctly yet, I will do so with a little guidance. Thank you so much for your story, please feel free to leave any comments for others, especially if you have info that we don't have. Jade, thanks again Keep in touch Richard Goodenough |
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Name: Jade E-mail:
Website: n/a Date: 03 Jun 10 12:53am |
Hi, I found out I was pregnant at 16, on my 17th birthday I had my first 12 week scan, I was scared excited nervous I had so many emotions, I can't remember the day clearly as my brain has automaticly blanked it out, I just remember a lady doing my scan, appolygising, the word anencephaly and termination? I remember crying so hard I couldn't breath I was in such a state the nurse led me through a back do to get out so I wasn't seen by others. The nurse told me to come back in 5 days time. On that Wednesday I came back to the hospital they gave me a few options but tried pushing me towards an abortion, I couldn't do it I already loved that little baby inside me, like you joanne my baby looked perfect on the scan screen, wriggling around and sucking it's thumb I just couldn't believe what they were telling me and to make matters worse they could hardly tell me much information such as how? Why? Chances of it happening again? I was so upset. In the end I dissided to have an induced labour at 15 weeks, I didn't want an abort |