Another Great Group: Gastroschisis

Finding support groups for rare birth defects is very difficult. I unfortunately know this from experience. Just six short years ago I got pregnant with my first child. Everyone was so excited including me, especially when it came time for the first ultrasound at about three months. Anxiously, I looked at the screen while the tech glided the wand over my growing belly. I waited for him to begin telling me that every little part of my child looked perfect, one body part and organ at a time. But when he stayed completely silent until the moment he announced that he needed to go get a second opinion, my heart sank and the tears couldn’t be fought back. My daughter had gastroschisis. Her intestines were on the outside of her little developing body from a hole in her abdomen.

Questions and worries instantly flooded my mind. I didn’t know who to turn to. No one I knew had a clue about my daughter’s condition and my next appointment with the specialist was too far away to wait it out. I got online and began my search. Sadly my results came up with close to nothing other than different definitions of the term and that its cause was still unknown. To this day I still do searches every now and then and try to help other parents out who are in the same position as I once was. Recently, I found a large support group on Facebook called Gastroschisis.

This is a great group to be a part of no matter what stage you are at dealing with gastroschisis. The group has members that are survivors, expecting parents, new parents and parents that have made it over the hurdles. Each member of the group us highly supportive and I have never seen a question go unanswered. The entire profile is open to the public, including the discussion boards, so anyone is more than welcome to take a look around before jumping in and becoming a member.

In the discussion boards you will find many success stories from parents and survivors. Find out how other parents dealt with all the heart wrenching pains of the NICU, the surgeries, genetic counselors and the whole whorl wind of it all. It is a lot to swallow but you don’t have to do it alone and you don’t have to go into it blind. Learn what to expect because let me tell you, when you see your child for the first time hooked up to machines and IVs, cords connected everywhere, it will hit you like a ton of bricks if you’re not prepared beforehand. I was terrified to touch my baby for fear that I would hurt her or pull on something I shouldn’t. She was so tiny and fragile.

I love when I see groups like these because without much effort, they manage to do so much good for a lot of people. I will keep posting reviews of the good, the bad and the ugly of Facebook pages for parents and parents to be. If there is a specific page topic you’d like me to research or a page you would like to mention let me know and leave a comment.