Okay, so here’s how my story goes. I had my first diagnosis of a major encephelocele in 1999. It was my very first pregnancy and I was young and naïve. I had no idea such complications could arise in pregnancy. I was totally numb when I heard the words “incompatibl
[More]e with life”. At that time we didn't have a definitive confirmation of MKS, yet there were major, major complications with my baby boy. It was my first pregnancy and it was detected on ultrasound that he had a major encephelocele, however, polycystic kidneys, extra digits, and low amniotic fluid were not seen. At that point, our peri. basically said it was like being struck by lightening and should never, ever happen again. Wishful thinking!!! I ttc again as soon as the doctors told me I could. In the beginning of my ttc journey the professionals told me this would not happen in another pregnancy. Basically it was supposed to be a fluke. I thought the only way possible to get over such a terrible loss was to try again. Little did I know that I would be devastated with my following pregnancy. For the second time I was faced with horrible pregnancy complications. However, the complications were associated with low amniotic fluid this time. There was no encephelocele to be found and the kidneys did not look to be polycystic. This discovery was almost a year to the date from the first time! It was the hardest most trying time of my life. I couldn't believe I was going through this twice. I thought once was excruciating enough. Of course then the doctors new something was wrong. They started with research and finally concluded that the complications were an effect from a genetic disorder, Meckel Gruber Syndrome. My odds of ever having a healthy child were the same as yours. I have a 25% chance of this happening with every pregnancy. I finally decided to take time out from ttc, because I just couldn't do it any more. My body and my mind were so exhausted from the roller coaster ride. Then, after three years off, I decided to give it another go. I was very lucky that I was still young and had some time on my side. Fortunately, I was blessed with my miracle baby the third time around. My daughter is now 4 years old and the love of my life. She is completely untouched by MKS. I can't even imagine what I would do without her. However, bad luck struck again! In the fall of 2007 I was able to conceive for a 4th time. I was so excited b/c of the success of my daughter, that I kind of went into the pregnancy blind. It gave me a false sense of hope that nothing would ever be wrong again. If I could beat the odds once, I could beat the odds a second time. Unfortunately, that was not the case. I had to go through a diagnosis of MKS yet again. This happened to be the worst case yet. My precious baby boy had a major encephelocele and severe polycystic kidneys. It’s been right at a year since my last loss, and I'm still a little numb with pain and fear. I have suffered through three terrible losses that have really changed my life in so many ways. At the same time my living daughter is the biggest miracle ever. And, I can honestly say that I'm not sure if my journey is over yet. You never know what tomorrow brings. I do not want to give up hope and let this beat me. I am currently 14 weeks pregnant. So far things look perfect with this baby (crossing my fingers).
Just checking up on you, to see how you are.
I am doing good, New Year new hope. We are currently trying again this will be our second month. But it took 8months to get Angel so I know its not magic. But I have faith that very soon I will have a healthy child.
Talk to you soon
Angel Peanuts Mom
I guess I am going to do what ever is nessary to keep myself sane!!!! I am not going to push myself to do anything crazy that I don't think that I will be able to handle. One of my good friends is pregnant, she found out when I found out that I was going to lose mine. I am not going to that baby shower and I don't feel guilty, I will just give my sister some money and have her get the gift and my friend will understand. and if not so be it.
Talk to you soon
Angel Peanuts Mom
This site complies with the HONcode standard for trustworthy health information.
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.