Friday, January 04, 2008

Sad news about the baby

This is an email we sent out to our family and friends, but we also know there are some of you who read our blog that we do not have info for, but read our blog. We have posted this here for you.

We received some news today about our baby. Unfortunately, it is not good. During the sonogram they discovered several abnormalities. There appears to be some sort of heart malfunction, although it is not clear we are being referred to a neonatal cardiologist. It also appears as though one of the baby’s kidney is underdeveloped and not functioning properly, if at all. There were also some noticeable problems with the arm/hand development. It seems as though one of the two bones that connect to the hand are missing in both arms which are also shorter than they should be at this stage of development.

What is next……………?
The doctors have suggested and we have agreed to an Amniocentesis. This is a test that will draw fluid & cells from the womb and cultured to determine if there is a chromosomal disorder. They are particularly leaning towards Trisomy 18, which is an extra chromosome on #18. Many of the abnormalities we mentioned above are unfortunately associated with this syndrome. This test will help to rule out or confirm the Trisomy. We will be scheduling the test early next week and it takes about 10-14 days for results. So we anticipate knowing more the end of January or early February. We will keep you updated as we know.

What does all this mean..............?
It’s very difficult to say for sure at this point. We are trying to be strong and positive as best we can. The reality of this depends a lot on the results of the Amniocentesis. If it is negative then it is likely that the baby will be born with some form or forms of handicap. This could be mental, physical, or a combination of the two. However, if the results are positive then the prognosis is unfortunately grave. There is a small chance that the baby will survive, but not likely. Trisomy 18 is usually fatal, with many babies passing within days of birth. However, a small number of babies (<10%) live at least one year.

Our decision…………….!!
We talked with a genetics counselor yesterday after finding out the news. She laid out all the choices we had and the steps we would take with each of these. One of these is of course termination. This is NOT an option for us. We know and understand that many people may not agree with this decision, but we ask that you please support us. We are fortunate enough to both come from very loving and nurturing families and we have decided that we want our baby to experience that as well, even if it is for a few short hours. We will take what God will give us and cherish every second of it.

What can we do to help..................?
We know that everyone will be shocked by this news and will want to help out in many ways. We truly appreciate this. We appreciate you wanting to be here, to help and support. There may be a time in the near future that we will need to take you up on that, we will definitely let you know. Do feel free to call us and talk and please do not be afraid to ask questions. We do plan to cherish the rest of this pregnancy and all the wonderful memories it will create. The next four-five months will be very up & down emotionally for us and we are preparing ourselves for this long and difficult journey. We ask that you keep the baby in your prayers and continue to support us. We believe that God will grace & bless our family as he has so many times before. He knows how important family is to both of us and has touched us all with his love through each other. Miracles can happen, and if there ever was a family deserving, with all the love that exist within, it is ours!

1 comment:

Anonymous said...

May I recommend www.trisomyonline.org It is a group of families who have all been where you are now. There are also many families on the list that have older and even adult children with trisomy 18. But whether they have earthly angels or heavenly angels they help each other on the journey. It really does help to share the journey with others who understand.