tag:blogger.com,1999:blog-1489893954801724761.post3779187448160693618..comments2023-10-24T06:38:02.218-07:00Comments on Sami's Blog: What is an encephalocele?Lisettehttp://www.blogger.com/profile/06486760107232191431noreply@blogger.comBlogger30125tag:blogger.com,1999:blog-1489893954801724761.post-47536975205031314252017-05-05T15:12:42.840-07:002017-05-05T15:12:42.840-07:00My daughter Robyn is nearly 4. She had an encephal...My daughter Robyn is nearly 4. She had an encephalocele at the base of her skull with no brain matter but other brain malformation. She's healthy and happy, reaching all milestones but slowly. Love to hear from you sgordon83@hotmail.co.uk Anonymoushttps://www.blogger.com/profile/10229661572760521788noreply@blogger.comtag:blogger.com,1999:blog-1489893954801724761.post-45344347319328699022016-07-25T23:25:20.333-07:002016-07-25T23:25:20.333-07:00hi my name is sabel from philippines. my son is 3 ...hi my name is sabel from philippines. my son is 3 yrs old and also having an encephalocele case. we pray that he undergo the operation, he have 2 case of ctscan last week. 1 is cranial and 2 is face cut ctscan. we pray that he undergo the operation after the reading of her ctscan next week. i will comment again on this site after her operation. please pray my son. Anonymoushttps://www.blogger.com/profile/05980319061383398461noreply@blogger.comtag:blogger.com,1999:blog-1489893954801724761.post-1043907268712717042014-07-12T20:17:12.128-07:002014-07-12T20:17:12.128-07:00I'm another mother of a happy three year old, ...I'm another mother of a happy three year old, born with an encephalocele. I hope anyone who finds this, will also search out Facebook groups for support. There are two, one general group, and one private group specifically for parents. It's a terrifying diagnosis, and it helps to have people to talk to. <br /><br />Sami is absolutely beautiful. Thank you for sharing her with us. Annehttps://www.blogger.com/profile/15667772171360379262noreply@blogger.comtag:blogger.com,1999:blog-1489893954801724761.post-1383086068994257602014-06-02T19:31:20.445-07:002014-06-02T19:31:20.445-07:00Here are two Miracle babies to share. My is includ...Here are two Miracle babies to share. My is included. Have FAITH>><br />http://fivemonkeysmama.blogspot.com/ <br />https://www.facebook.com/PrayersForJaceMichaelCooper?ref=bookmarks<br />Anonymoushttps://www.blogger.com/profile/05773230459081531090noreply@blogger.comtag:blogger.com,1999:blog-1489893954801724761.post-78578311362362092532014-04-21T19:08:45.740-07:002014-04-21T19:08:45.740-07:00My name is Jackie and I am 14 weeks and my baby ha...My name is Jackie and I am 14 weeks and my baby have the some want should I do I want to have it but at the same time I do not want to go though that again back I 2011 my son pass because he was born at 22 weeks and I do not thank and can take that again so want should I do can someone please tell meAnonymoushttps://www.blogger.com/profile/15847258404855409975noreply@blogger.comtag:blogger.com,1999:blog-1489893954801724761.post-49963474761582550292013-06-07T22:21:48.614-07:002013-06-07T22:21:48.614-07:00Thank you everyone for sharing your story. I just ...Thank you everyone for sharing your story. I just got the news at 14 weeks along the baby has encephalocele, I am devastated. I have 2 beautiful amazing healthy kids. I had on pregnancy and the baby was anencephalic and now this pregnancy with encephalocele. I don't understand why I am at high risk for NTD. I was found to have MTHFR gene mutation took extra folic acid mega doses and this still happened. Anyone else tested for the gene mutation?Sharonkimhttps://www.blogger.com/profile/16990353528942079241noreply@blogger.comtag:blogger.com,1999:blog-1489893954801724761.post-63318780205667431642012-11-12T12:24:05.094-08:002012-11-12T12:24:05.094-08:00Hi - like all of you, my life has been touched and...Hi - like all of you, my life has been touched and forever changed by a baby with encephalocele. My daughter Gianna was born with an occipital encephalocele on September 23, 2012 - I started a blog when she was diagnosed at 20 weeks (giannamaried.blogspot.com)<br />We have been incredibly blessed by her progress beyond our wildest dreams. <br />My heart goes out to all who have contributed your comments and stories. AmyDhttps://www.blogger.com/profile/11417111542916192329noreply@blogger.comtag:blogger.com,1999:blog-1489893954801724761.post-715939694836754872012-09-20T18:12:10.948-07:002012-09-20T18:12:10.948-07:00My family also has a member with encephalocele. O...My family also has a member with encephalocele. Our first child, Hope, was diagnosed at our 20 week ultrasound. They told us she would probably not survive to term and if she did, she would not survive birth. She did both and lived for 37 magnificent days. I started a blog to commemorate her life (caeliocea.blogspot.com). Her 1 year birthday is this Sunday, 23 Sep. If your child did not survive, there is still hope.(K-Lee)https://www.blogger.com/profile/15239066087500608872noreply@blogger.comtag:blogger.com,1999:blog-1489893954801724761.post-56053648742483453302010-12-03T14:26:50.822-08:002010-12-03T14:26:50.822-08:00I posted on Oct 21, 2010 regarding my son Newt. I...I posted on Oct 21, 2010 regarding my son Newt. I did not realize that you could not contact us if you needed or wanted to. My email address is morris_girl3@hotmail.com. My Name is Lindsey.Unknownhttps://www.blogger.com/profile/09373216064674673646noreply@blogger.comtag:blogger.com,1999:blog-1489893954801724761.post-20210545171882524612010-11-29T17:48:52.928-08:002010-11-29T17:48:52.928-08:00My husband and I also found out at 20 weeks that o...My husband and I also found out at 20 weeks that our son has an encephalocele. We were also encouraged to terminate but chose not to. He has no other anamolies and no syndromes and is perfectly healthy other than the encephalocele. He is also very active and I LOVE to feel him kick. At 20 weeks, his encephalocele was measuring 2 cm. It is located near the top of his head but it still considered occipital. We go back on Dec 23rd 2010 for another scan. He is due on March 24th 2011. I would love to talk with anyone who has experience with this! My email is halee.whitesides@gmail.com and our blog is at www.caringbridge.org/visit/babycooperUnknownhttps://www.blogger.com/profile/09943477939612724639noreply@blogger.comtag:blogger.com,1999:blog-1489893954801724761.post-43920211840358390872010-11-23T06:08:08.875-08:002010-11-23T06:08:08.875-08:00Hi my name is Sierra Im 24 yrs old I live North Ca...Hi my name is Sierra Im 24 yrs old I live North Carolina and at 13 wks pregnant my docter told me my baby has the same condition "encephalocele". When I first heard about it all I could do was cry and ask God why me? What did I do so wrong that I would even be in this situation. My docters gave me the option of termination, or waiting to get further along and to see more of my babies condition. Well I am 17wks as of today I go for a MRI on the baby once I turn 18 weeks. I have been praying as well asking for others to pray for me and my baby. I have to trust God in the postion he put me in. This happen to me and others for a reason no matter what the outcome may be I cant give up! I trust that GOd will bring me through this. I dont plain on giving up I have come to far the sound of my babies heart beat lets me kno that he or she will be a fighter. I havent found out the sex of the baby yet I will next week but it doesnt even matter I just want my baby to have the best quality of life. Im so thankful for this site I thought I was so alone. Im thankful for everybody sharing their experience I plan to share my miracle baby with you all as well. If anybody has any form of advice for me my direct email is (sierra.mclean@bankofamerica.com) or (noteasilybroken1986@gmail.com)Unknownhttps://www.blogger.com/profile/13647334490215802796noreply@blogger.comtag:blogger.com,1999:blog-1489893954801724761.post-11129595550719634112010-11-18T00:11:14.433-08:002010-11-18T00:11:14.433-08:00Everyone please have hope and failth. I too, like...Everyone please have hope and failth. I too, like many of you, found out that my first born had an encephalocele when I was 5 months pregnant. We too were told to terminate my pregancy. We did not. Regardless of the outcome, I still wanted to hold her and see her. Madalyn was born on December 31, 1999. She weighed 5 lbs and 11 ounces. She was beautiful. We did nothing out of the ordinary for her except love and pray for her. Her expected few minutes of life got longer and longer. Minutes were turning into hours. The doctors decided we needed to do something. Madalyn had surgery on her second day of life and came home from the hospital after 7 days. Madalyn's encephalocele was at the base of her skull in the back. Hers did contain brain matter and when it was removed her entire cerebellum was removed also. We were taking home a beautiful baby and that is all that mattered. Madalyn had a slow start in life. She was extremely far behind in her mile stones. However, I am EXTREMELY happy to say that Madalyn is almost 11 years old and is starting to walk on her own. Pretty good for a little girl with no cerebellum. She is very intelligent and to look at her you would never know she has any issues. She is in a multiple handicapped class at school but does very well in life. I will say that I believe alot of prayers and her own determination has gotten her this far. Please don't give up hope!!!!! I didn't. If any one would like to see pictures or just chat, please contact TKW1995@aol.comTinahttps://www.blogger.com/profile/09181114881246024504noreply@blogger.comtag:blogger.com,1999:blog-1489893954801724761.post-2750890411644553212010-11-09T15:36:34.087-08:002010-11-09T15:36:34.087-08:00Hi my name is Nicole, I'm living in Aukland, a...Hi my name is Nicole, I'm living in Aukland, and I am 33 weeks pregnant, my husband and I were also given the news of our daughter at 18 weeks. We were told our only option was to terminate, but I felt that was no option and I could not live with the guilt hanging over my head. When i felt my baby move and heard her heart beat I knew she was a fighter and that there was hope for her, due to me refusing the termination has caused a wedge in my marriage but feel that our baby should be given a chance to live. Our baby girl is due 28 December 2010 and I know that God is a healer and that through him all is possible. So I am thankful for stumbling over this blog and inspired by all the stories and grateful that I am not alone, so for the other mothers out there going through this do not be discouraged and give up as there is always hope. I'ts time to fight for the ones without a voice and continue to spread the word. So thank you once again you truelly are awesome and God sent.nicolehttps://www.blogger.com/profile/08001528629193316320noreply@blogger.comtag:blogger.com,1999:blog-1489893954801724761.post-77738333854539902612010-10-27T20:03:41.270-07:002010-10-27T20:03:41.270-07:00hi there,my name is patricia and my son had the sa...hi there,my name is patricia and my son had the same thing. thank you for this site it helps to know that other child can servive my son did not and was two months prem. i live in new zealand and not many people have had this here as it is a small country. i did not have a termination as it would effect me in the future. it was nine years ago in two weeks so i thank you from the bottom of my heart that you are getting the word out. you rock.Unknownhttps://www.blogger.com/profile/02420541947156439683noreply@blogger.comtag:blogger.com,1999:blog-1489893954801724761.post-8405591693901225362010-10-21T10:53:02.731-07:002010-10-21T10:53:02.731-07:00Our Children’s Incredible Journey
I am sharing th...Our Children’s Incredible Journey<br /><br />I am sharing this with all of you in ultimate hopes that we can save other children and wish that all of you find it as inspiring as we have.<br /><br />On February 1, 2010 my husband and I found out we were expecting our first child. On March first (8 weeks pregnant) we found out we were expecting twins and at 16 weeks pregnant during a routine sonogram we found out that we were having a boy and a girl and our son had an occipital encephalocele. We were told that our son would probably not make it through utero and if he did he would only live to be a few hours to a few days old. We were told that if he made it he would not be able to breathe on his own, eat on his own, or see. Our doctors told us that we should selectively terminate our son. Well, selective termination was not an option. We saw 9 different doctors prior to our son’s arrival all with the same diagnosis. On September 23rd 2010 at 9:44 pm our son was born weighing in at 5lbs 12oz and 17 ½ inches long. His sister was born at 9:45pm weighing in at 5lbs 6oz and 15 ½ inches long. He came out breathing, ready to eat, and he could see… a true miracle! Three days after his birth he had brain surgery to repair the encephalocele and at 2 weeks old he had a second operation due to hydrocephalus. My son is perfectly healthy. He eats, sees, and cries; everything a newborn should. God is still performing miracles today! They are not sure what causes an encephalocele. It only affects 1 out of 5000 children and unfortunately 80-90 % of women terminate the pregnancy. We have already met with many different physicians, nurses, nursing students that had never seen a child with an encephalocele and are taught that the family should terminate the pregnancy. We are trying to spread the word to keep your baby. Our son is living, breathing, seeing proof! My son was in the NICU for a week after he was born and when we got to bring him home on September 30th we were elated!!! We scrambled to get a car seat as we were told not to bring one to the hospital because we would not be going home with our son. He is home, happy and healthy! He is so tough and such a fighter! Praise God! We knew throughout our entire pregnancy that God had a great plan for our son. Our son has an amazing story to tell and we will help get his testimony out there to try and save other children!Unknownhttps://www.blogger.com/profile/09373216064674673646noreply@blogger.comtag:blogger.com,1999:blog-1489893954801724761.post-23540314831560573842010-10-19T13:44:53.459-07:002010-10-19T13:44:53.459-07:00Hi Beth,
Sorry to hear your story, we are also i...Hi Beth, <br /><br />Sorry to hear your story, we are also in the same situation, we just got to know yesterday that our baby is having this. what did you do ? can you please write me @ rajanikanth.r@gmail.com. I don't know what to do, we are alone here in US and all my family in India. <br /><br />Thanks & Regards,<br />Rajanikanth RRajanikanthhttps://www.blogger.com/profile/04696231378974806952noreply@blogger.comtag:blogger.com,1999:blog-1489893954801724761.post-12149805749437974672010-09-20T06:23:17.775-07:002010-09-20T06:23:17.775-07:00hi, got told last week that my baby has Encephlace...hi, got told last week that my baby has Encephlacele in the back of her head close to her neck, didn't get told much from the doctor or the widwife they just sent us off to do are own research. Read so many different storys and really don't know what to think im not ready to give up on her. I think more should be done for this condition because i had never even heard of it before.Unknownhttps://www.blogger.com/profile/08475349360999231198noreply@blogger.comtag:blogger.com,1999:blog-1489893954801724761.post-23521863405228051422010-08-04T21:05:25.675-07:002010-08-04T21:05:25.675-07:00I just found out our baby boy has this , I am 20 w...I just found out our baby boy has this , I am 20 weeks pregnant. It was hard to take in, but i believe in miracles and I know ANYTHING is possible. I have asked alot of people (who beleive as well), GOD, Angels, Guides of Light to assist in this healing before the baby's born. I am NOT giving up on him. He is perfectly healthy otherwise. ALL of his major organs, anatomy look perfect. I beleive he chose this to overcome it. And he WILL survive, and be very smart, i feel it in my heart.<br />I am glad i found this website. I send my LOVE to you ALL. Please pray for my baby boy to pull through this! In my deepest sincerity and gratitude. Jessica email: mind4twisting2art0@gmail.com<br />or yahoo.comUnknownhttps://www.blogger.com/profile/18047308750596666563noreply@blogger.comtag:blogger.com,1999:blog-1489893954801724761.post-34491666084551511852010-05-18T13:21:01.845-07:002010-05-18T13:21:01.845-07:00Jenny, if you need to talk you can email me at lis...Jenny, if you need to talk you can email me at lisarry99@yahoo.com I will be praying for you and your family, ((HUGS)).Lisettehttps://www.blogger.com/profile/06486760107232191431noreply@blogger.comtag:blogger.com,1999:blog-1489893954801724761.post-89838441533159868422010-05-18T12:15:04.233-07:002010-05-18T12:15:04.233-07:00No blog at this stage. But I was thinking of doin...No blog at this stage. But I was thinking of doing one post operation. Also one that gives people support with special needs children and dealing with it.Unknownhttps://www.blogger.com/profile/09823630602251579535noreply@blogger.comtag:blogger.com,1999:blog-1489893954801724761.post-25763681484303733132010-05-17T13:12:28.441-07:002010-05-17T13:12:28.441-07:00Jenny, oh my goodness I am sorry to hear about you...Jenny, oh my goodness I am sorry to hear about your son. I will pray that everything goes well and that he recovers quickly. Do you have a blog? Please keep me posted.Lisettehttps://www.blogger.com/profile/06486760107232191431noreply@blogger.comtag:blogger.com,1999:blog-1489893954801724761.post-84255477643215321112010-05-17T12:47:13.439-07:002010-05-17T12:47:13.439-07:00Thank so much for your inspiring website and the s...Thank so much for your inspiring website and the stories. Reading the comments makes one not feel alone. We found out a month ago that our 7 year old son has a Encephlacele (frontal) which was extremely rare as there is no obvious signs of it when you look at his face. They picked it up co incidently on a CT scan after he had a fall and doctors were checking for a broken nose. They are due to operate on him in the next month. We are praying for a miracle...Unknownhttps://www.blogger.com/profile/09823630602251579535noreply@blogger.comtag:blogger.com,1999:blog-1489893954801724761.post-62758128820186260112010-05-14T10:21:36.797-07:002010-05-14T10:21:36.797-07:00Layton, I think it is amazing that you are alive a...Layton, I think it is amazing that you are alive and doing so well. You can email me directly at lisarry99@yahoo.com<br />I would love to hear from you, especially after your scans.Lisettehttps://www.blogger.com/profile/06486760107232191431noreply@blogger.comtag:blogger.com,1999:blog-1489893954801724761.post-81122742833574747362010-05-14T06:43:05.119-07:002010-05-14T06:43:05.119-07:00Thankyou for your message, the situation you found...Thankyou for your message, the situation you found yourself in last year must of been so heart wrenching life can be so cruel, I have always been told that i was born with hydrocephalus, It was only two weeks ago i actually found out from my neurosurgeon that it was actually encephalocele, i've had to ask family members about how i looked at birth and how they felt when they saw me as i looked very different from any other newborn, unfortunately my mother died over three years ago so i couldn't get info off her, I only found these blogs due to trying to find out if i have a short life span as i've been having bad aches and pains in my scar and neck and spine i'm due to have MRI scans on may the 30th and another brain scan to keep an eye on my swollen pictuity gland,so because i was born 39 years ago with encephalocele not alot was known back then about this birth defect i cannot seem to find information on other associated problems with this defect in later life, I feel blessed to be still here but very scared that the pain i feel is related to my encephalocele, I do really feel for all the parents and children that are having to deal with this defect, and i do hope that these babies have the same chance at life like i have.layton18https://www.blogger.com/profile/04164816294702252018noreply@blogger.comtag:blogger.com,1999:blog-1489893954801724761.post-20351128094960229542010-05-12T12:01:39.266-07:002010-05-12T12:01:39.266-07:00Layton18, not sure how to respond to you any other...Layton18, not sure how to respond to you any other way. I hope you are reading this. That is awesome that you have been able live with encephalocele, that is so uncommon. When my daughter was born on 10/26/2009, we realized the doctors were wrong. Sami was supposed to be a twin. She was connected with her twin (Faith). We believe that was what probably caused the other defects since they never split correctly. <br />May the Lord above continue to bless you.Lisettehttps://www.blogger.com/profile/06486760107232191431noreply@blogger.com