Friday, April 03, 2009

Why I am part of TEAM TRISOMY!!

This is a long one. Please read. This is why I am part of TEAM TRISOMY. I want to help raise awareness, so that parents like Kathleen and Dusten can have the help that they need for their unborn baby and that no parent will EVER have to hear that their child is incompatible with life.

Please read on:

Kathleen's Story

"We have been told that her hernia is fixable, but that because she has a Trisomy 18 diagnosis, there isn't a doctor out there that will touch her. "No doctor will touch her." Straight out of not one, but three doctors' mouths! "


From Kathleen:

My name is Kathleen. I am 36 and I have been married to my husband Dusten for almost 13 years. We live in Fort Worth, TX have three beautiful girls, ages 7, 4 and 20 months. Dusten is a firefighter/paramedic and I am fortunate to be able to stay home to be a mommy to my kids.
I had never heard about Trisomy 18, or any trisomy for that matter until we were given our diagnosis. Our OB/GYN's office had called, telling me they wanted me to come in and talk to the doctor. We live about 30 miles away and I told her that I would rather talk to the doctor on the phone, that the nurse was scaring me. After quite some debating, she put our doctor on the phone.

She informed us that our blood screening came back positive for Trisomy 18, and that was serious. She told us she would schedule an appointment with a neonatologist who would conduct a more specialized sonogram. Our OB/GYN told us we needed to start preparing ourselves for what lies ahead, and that even though a positive screening result doesn't confirm a diagnosis, it still could have a negative outcome.
At 24 weeks, the very next day we went for our specialized sonogram. Before going in, a genetic counselor tried to tell us a little bit about Trisomy 18 - what it meant and what markers the doctor would be looking for. She also suggested that most people terminate their babies if they are found with a positive diagnosis. We were scared to death to the say the least, all before even going into the sonogram.

The doctor found many of the markers associated with Trisomy 18: cysts in the brain, a hole in the heart, a diaphragmatic hernia, and clenched hands. With all of these markers present, a Trisomy 18 diagnosis was most likely positive, but we would only know for sure through an amniocentesis. We decided to to have that done, and would wait several days before finding out the results.

In the mean time, while waiting for the amnio procedure to be done, we went back to talk to the genetic counselor who told us that it was our choice to terminate the pregnancy or carry to term. If we terminated, she could put us in touch with grief counselors and such, but we if chose to carry on, she couldn't not offer any further help. I think this made me more furious and fearful than anything. I don't think my husband and I had ever felt so much alone.
Because I am a very positive person and because of my faith, I knew the only decision for me was to carry to term. We knew we might not make it to a full 40 weeks, but we would try and make it as far as we could.

Unfortunately, we have been surrounded by doctors, counselors, nurses and people in general who would rather wash their hands of this pregnancy and I have yet to encounter anybody who is willing to treat me and my daughter with a little compassion and treat us a human beings. My OB/GYN, my perinatologist, and then the neonatologist have all pushed us to terminate the pregnancy early on. They kept telling us that our baby would not be viable and that there would not be any quality of life should she be born alive. We even had the doctors calling us at home days before the termination cut off date, asking if we were sure that we didn't want to terminate.

And yet the whole time, we really weren't being told how to progress with our decision. Once our amnio results came back, I surely thought we would have another meeting with the genetic counselor to explain things further, to at least clarify which type of Trisomy 18 our baby had and what we should expect down the road. No such thing. The counselor said she couldn't help us or provide us with any other information. I even clearly remember that the sonographer told us not to research this diagnosis because there was too much false information on the Internet.
I am the last person for a doctor to tell me what to do or not do. For the past couple of months my mother and I have been trying to research all that we can to see what is actually available for our baby girl. We have read the statistics and the stories about the deaths and lives of babies affected by Trisomy 18. Not all of them die! And it makes me wonder that if some of these babies had not been denied treatment, if the statistics would be different.

I fully understand that there is not a magical pill that will change the mental retardation part of this diagnosis, but no one can guarantee me the severity at which my daughter will be affected. I understand that my daughter may not benefit from certain procedures, but no none can guarantee me that she might not take well to them. Surgery may work for her, it may not, but not one doctor can guarantee me any kind of results. In my eyes, doesn't my daughter, doesn't every baby, deserve a chance at life?

We have been told that her hernia is fixable, but that because she has a Trisomy 18 diagnosis, there isn't a doctor out there that will touch her. "No doctor will touch her." Straight out of not one, but three doctors' mouths!

I have been told that our children's hospital here in Fort Worth has a pediatric cardiologist, a hernia surgeon, and a great NICU with ECMO that would benefit a healthy baby should they be born with the defects that my daughter has. However, because of her Trisomy 18, they will not operate on her.

I have been told that the hernia has pushed her stomach and digestive parts through her diaphragm, into her chest cavity, which is compressing her lungs and pushing her heart over to the side. If she is born alive, the first thing she will do is try to take a breath. With the compressed lungs, it will be hard, or nearly impossible for her to breathe on her own.

I have had 2 NICU nurses tell me that if a hernia surgery is to be performed, it has to be done right after birth, that my baby girl would need assistance in breathing until the surgery can be done. It is an immediate procedure. On the flip side, the doctors are telling me the best we can do is try to let our baby girl breathe on her own, that she will hopefully pass with peace within 30 minutes to couple of hours. They have told me there is nothing they can do, that Trisomy 18 is basically a death sentence and we can try to keep her warm and hold her as long as possible.
I can't believe that with all of today's medical technology and equipment, that doctors have the power to attempt to save lives, but that in my case, it seems like they have chosen not to help those who are less than perfect. I understand that my baby girl will have issues, and the she might not survive the fight in the long run, but doesn't she deserve a chance?

I feel like there are so many what ifs and there are so many kids who have been born with Trisomy 18 and have lived. Do the doctors not realize this? Do they not care? I know what statistics say, but I also believe that each case should be handled on an individual basis. All I am asking for is a chance.

All I want is my right as a parent to do what is best for my child, and I believe that giving her a chance is the one thing I can do, and perhaps that one thing that I can have control over. I have to try. Miracles do happen.

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