Trisomy 18 (Edwards Syndrome) Support Group

I joined this group because the Trisomy 13 site doesn't have much activity. I decided to write to you because you seem to need some encouragement.
My son was born with Full Trisomy 13. I had no idea he had this condition. Doctors explained to me that Matthew would not live past a week. He was born with heart defects, kidney issues, stomach issues, etc.
Very long story short, Matthew spent 10 weeks in the NICU, survived three surgeries, aspiration pneumonia, being on a ventilator, and many other things. Right now he's sitting in his bouncer glaring at me because he wants me to pick him up. By the way, he'll be nine months old in a couple of weeks. :)
My son's Geneticist told me that the lower the Trisomy number, the greater the defects the baby could potentially have and that Trisomy -13 is incompatable with life.
Nine months later, by the grace of God, my son is alive and well.
Mosacism means that some of your son's cells are normal and some are Trisomy-18. This means he may very well have a chance of not having all of his major systems affected.
Though, till you have testing, no one knows for sure.
If you have your baby, I advise you to find out all you can about Trisomy-18. And to get a thick skin when talking to doctors. Most don't offer much hope but you may encounter some that do. Join support groups online. They can be invaluable-- parents of other Trisomy kids can offer the most helpful advice.
I can't imagine life without my son. He laughs, smiles, gets mad-- he's a baby. I truly believe with all my heart, despite his diagnosis, that Matthew will be with us for many years to come. This journey hasn't been easy. I'm worn out from running to hospitals and appointments but I'll gladly do anything necessary to keep him going. And right now, he's great.
I hope you make the best decision for you and from your post I can tell you really love your baby.
Take care, and I'll keep you both in my prayers!
Danni

Oh thank you so much Danni for your reply, this is just what I wanted to hear, that there is hope and My little one may have the chance to laugh and smile, like matthew.

I have already encountered the brick wall that Trisomy kiddies are up against, every time I tell someone the first thing they say is ' I assume you are terminating' which is really upsetting for us as it has never been something we want to do.

I have had further tests done now, due to the mosaicism and have been told that it is in fact full Trisomy 18, and also that we are having a little boy, which I knew all along secretly as I already have 4 beautiful boys at home with me :)

I have taken all the information you have given me on board Danni, and I wish you and Matthew many many happy and healthy years, so little and he is already my inspiration.

Thank you x

we have just lost our son to edwards syndrome at 23 weeks. We did make the decision to terminate the pregnancy as our little boy Ned had lots of complications and would mean that he would suffer if we did carry to term. It was the most hardest decision we have ever had to make and although we have no regrets about ending the pregnancy its just so sad every day. Its a difficult decision either way whether you decide to terminate or carry on the pregnancy. You have to consider what impact it will have on yourself and your family and the life that your little one will have. good luck with whatever decision you decide.

I am so sorry to hear about your son Bulagirl, whatever decision you end up making it is always hard and I am very sorry for your loss.

We ended up deciding on keeping our little boy, Liam, after making contact with many families with children living with Edwards and also T18. I am now almost 27 weeks pregnant. Liam has a heart condition, and a few other minor problems but so far so good and I am happy that I made the right decision for us.

I wish you well for the future xxx

Sorry above post was meant to say Edwards and T13.... I really do have T18 on the brain!!