I decided to start this blog because there are limited resources out there for mother's of children or mother's to be of children with omphaloceles. When I learned of my baby's diagnosis I was 12 weeks pregnant and felt like the rug had been pulled from under me. I spent days researching information on children with omphaloceles (SCARY as you may already know), omphalocele repairs, best hospitals and pretty much anything I could get my hands onto at the time. I also spent days trying to find a place where I could talk to other mother's of omphalocele children...the blogs or forums were very limited...needless to say I didn't find anything on The Bump. That being said, is why I started this blog...I need a place where I can talk to other mother's who have been or are in the same situation. WE need a place to vent, ask questions, laugh, and cry when we need to without pressure or fear.
I as I am sure you did, I spent days asking, "why us, why are we the 1 in 5,000?" I couldn't stop thinking about everything I had done in the past weeks, what I ate, what I cleaned with, how I slept, and my husband did the same. If you are just tuning in or know about omphaloceles you know that YOU did not do anything to create this birth defect in your child.
I am not a doctor nor an expert in anything medical, I just have my thoughts and the information I researched or have learned through my conversations with my physicians and counselors. I plan on putting what I find here on this blog to share with you all.
Thank you for taking the time to stop by, I hope you can find a friend here, support, and most of all know that you are not alone in this...
... neither are you.
ReplyDelete<3
Hello Morgan,
ReplyDeleteI hesitated first to post here because I am not a native speaker ( I am from Germany) but then decided to take a chance to contact to other moms with the same diagnose.
I am 16 weeks pregnant and just got yesterday the omphalocele diagnose at the ultrasound. My husband and me were shocked and since we got home I did a lot of research about risks, therapy and of course other parents with that problem.
I am 40 years and this is my 2nd pregnancy after 17 years. It wasn't planned at all though we are happy about this baby.
Because of my age I was about to have the amniocentese anyway which is next week.I am scared and can't wait for the result.
Your blog encouraged me and I feel a little better since I read your story. Thank you.
Jane
Thanks Jane!! I am sorry it took me so long to comment, I just saw your comment on here...Please let me know how you are doing...if you need anyone to talk to please feel free to contact me at anytime! Best of luck to you...I am really glad that you decided to post a comment...we need to stick together no matter where we live!
ReplyDeleteHi Morgan
ReplyDeleteMy name is Krissie. I am 34 years old and my husband and I are discussing having children. When I was born I weighed 3 pounds and born with an omphalacele. I was born on September 11, 1975 in Northern Maine. They did not know that I had an Omphalacele so luckily my mom had me cacerian. I was shipped (taken by a helicopter and litteraly wrapped up in plastic) to Portland Me. My doctor was Dr. Dibbens. He was amazing. I was also born with 2 other birth defects. I had an aterial septal disorder ( a small hole in my heart) and I also had to have the valves and tubes (urethas) replaced in my kidney. I had the surgery for the Omphalacele. I have a mesh screen in my stomach. I have a lot of scars b/c I was one of the first babies in Maine to have had this birth defect. I was in and out of the hospital until the age of 4. The doctors could not find the hole in my heart and thought the hole had healed on its own and so they did not need to do heart surgery. 3 years ago I got pregnant and had a tubal pregnancey. After the surgery I went into heart failure and they discovered that my hole was still there......I lived 31 years w/out any issues. Anyway I had open heart surgery last April and received a clean bill of health this past July.
All that said and done.....I have had a great life. My parents always tried to "baby" me when I was little but I had a normal childhood. I participated in school sports and did not have any other major issues.
Anyway as I mentioned before My husband and I are thinking about having a baby. I spoke w/ my gynocologist about my medical hx. Unfortunately she has not ever treated a woman who was born w/ an Omphalocele and had a baby. I am being sent to a high risk pregnancy doctor to discuss my options. I have always wanted to be a mother but have never dealt with the issue until now. Tonight I started doing some research about women who have had successful pregnancies after being born w/ the Omphalacele and I came across your post. I just thought I would share my story. If you or anyone else on here know of someone in my position please pass along my email. I am feeling very alone right now and have not found any information or resources on this situation. Thank you for allowing me to share my story. Good luck to you and your husband. Krissie Rubino
Krissie,
ReplyDeleteThank you for sharing your story with all of us on this website. I have to say that from what I learned omphaloceles are at total anomoly and there was nothing your mother could have or have not done to prevent this birth defect.
I do not know anything about people who have had an omphalocele having a baby but my doctor told me that if my husband and I decided to have another child the chances of that child having an omphalocele are extremely tiny.
I know it is hard to wait to talk to the specialist but I know you will get the answers you need. I go to a high risk OB and to a maternal fetal medicine doctor (they keep tabs on the baby and his growth via ultrasound).
Best of luck to you and if I find out any information I will let you know. I am going to the doc on Tuesday, I am going to ask them about your situation.
Hello Morgan,
ReplyDeleteI just wanted to say thanks for writing this blog. I find my self in the same situation and its comforting to read about your experience. We are still early in this journey 16 wks 5 days and I am sure all you have shared will help us through it. It is also great comfort to know your little boy just turned one year. I can't wait to share your blog with my husband.
Dalia,
ReplyDeleteFirst, congrats on your pregnancy. Second, I am really glad that my blog is helping you, that is the exact reason I made it. Please feel free to email me at mdeevy@optonline.net where we can talk more.
Hi everyone.
ReplyDeleteI know I have only found this blog now, but I felt the need to comment and give you all a bit of hope!
I was born with this condition in 1981 in South Africa-one of the first recorded births in the country. I am now 31, and healthy...with very few symptoms and only a few small complications! I completed university, have an amazing job, and got married last year....all this after the doctors told my parents I wouldnt survive! So, keep your faith, and keep praying!
xxxx