[tri-med] Re: (no subject)

Denise:
My heart goes out to you.  Really.  I just completed a battle with 
non-compassionate doctors myself, so I think I can feel some of your pain.  I'd 
like to share my story with you, and hope I can offer you whatever peace I can.

Our baby girl was diagnoses with T18 when I was about 24 weeks pregnant, and 
even though I had made the decision to carry to term, they repeatedly urged me 
to terminate the pregnancy.  Even though I had made my wishes clear, I feel 
like they were disappointed and from that point on, I feel as if they wanted to 
wash their hands of the whole thing.  They wouldn't answer my questions, and 
kept telling me to ask the other doctor.  He would tell me the same thing.  As 
time went by, I talked to everyone I could possibly think of.  My genetic 
counselor was not giving me the answers I wanted, and the perinatologist 
sonographer was not answering any of my questions either.  I was getting the 
run around from the beginning, and I was furious.   Isn't it my right as a 
patient, as a mother, to know exactly what is going on?  If I didn't ask the 
question, they wouldn't tell me.  They were monitoring my blood pressure and 
amniotic fluid levels, but they
 wouldn't tell me what they were unless I asked.  At one point, the levels were 
so high, my OB freaked out and decided that maybe she should start reading the 
progress reports.  She didn't have a clue, and as a the patient, I wound up 
catching a lot of the problems and high risk factors.  Funny, that the doctors 
weren't catching that.  I finally made the decision that the one thing I could 
have control over, was my knowledge and education.  I started researching T18 
and other doctors in the surrounding area that could possibly help me.  For 
starters, I found a genetic doctor who actually took the time to explain to me 
exactly what T18 is, and what kind we were dealing with.  Come to find out, we 
had full T18, and it was not something I could genetically pass on to my other 
children.  What a relief, but I wondered why the first set of doctors didn't 
explain this.  Nobody told me there were different kinds (full, partial, 
mosaic) and I wanted to
 know what we were dealing with.  Then, I decided to get a second opinion from 
another perinatologist.  He told me things about our baby girl that the first 
doctors refused to discuss with us.  The more I followed down the road of 
finding new doctors, the more I learned and began to understand what we were 
facing and the severity of our particular problem.  Although my new doctors 
told me that the possibility of our baby girl living and having a chance at 
life was grim, at least they took the time to explain things thoroughly, and 
gave us a really good picture of best case and worse case scenario.  Although 
the new doctors couldn't guarantee anything, they did explain to me what might 
be able to be done if she were to be born alive and breathing.

Our baby girl had a diaphragmatic hernia as well, along with a heart defect 
that is pretty common in trisomy babies.  First we were told that it was on the 
left side, and that it could be fixed, but that no surgeon would touch her 
because of her T18 diagnosis.  That infuriated me.  No one was willing to give 
her a chance?  I spent weeks tracking down doctors who performed this surgery.  
I researched for weeks, trying to find a doctor that would help us.  Finally, I 
found a neonatologist at a different hospital who would look over my records 
and give me her opinion.  Come to find out, the hernia was on the right side, 
and was worse than originally thought.  She did explain to me how they treat 
and operate on "healthy" children who are born with this defect.  She  
explained to me that there would be a lot of factors that came into play before 
they could even operate, such as the baby's size and weight.  Certain things 
had to be in order if the
 baby were to have surgery and survive.  At this point, I felt a little better, 
that at least someone was giving me a full explanation.  

In the end, we switched doctors and our delivering hospital.  I delivered next 
door to a children's hospital that had better specialists and surgeons that 
could possibly help our daughter should she be born alive and breathing.  I 
also got the hospital neonatologist to promise me a full exam once our baby 
girl was physically here, not just rely on what the sonogram was telling us.  
(The previous doctor had promised us a warm blanket and a box of tissues, 
stating that an exam would not be necessary or conducted.)  By this time, we 
had explored all our options, including comfort care.  We talked about warmth, 
nutrition, pain meds, the pros and cons to a ventilator, possible surgical 
options, etc.  I had no idea what was to come next, but I thought that at least 
we were surrounded by people who cared enough to look at me as a human, a 
pregnant mother who still had to go through the delivery process and still had 
to recover and continue
 on living.  I was still a person, with a living baby in my belly, and NO BODY 
could guarantee me how this would come out in the end.  I wanted to be 
surrounded by caring people who still saw me for me, not just a diagnosis. In a 
potentially negative situation, I wanted to be surrounded by the most positive 
people I could find.

YOU are your baby's best advocate.  Only YOU can fight for your baby, to love 
him and protect him in whatever way you can find.  My answer to process and 
cope with this was to keep trying and keep asking until I found out the 
answers.  

At this point, I turned everything over to God.  I know we are supposed to be 
careful about religious emotions here, and probably technically not supposed to 
use this word, but I am just telling you my story, not preaching it.  I came to 
a point where I felt like I did everything humanly possible to hep my baby 
girl, and I would just have to wait until she was actually physically here, 
before we could assess her condition and take it from there.  I knew I had 
surrounded myself with better caring doctors, and I felt like there were more 
positive people surrounding me in a time of uncertainty and fear.  I don't 
think I could have done any better.

In the end, however, Bethany Kate passed away in utero at 35 weeks.  It just 
wasn't her time, and my decision was made for me.  That's a whole other story 
in itself, but I feel like my journey was one of hope and knowledge.  I NEVER 
gave up on my baby, struggling every step of the way to try and find care for 
her.  At least in my situation, there was nothing they could do for her in 
utero.  We had to wait until she was born.  I fought for her through the end, 
did everything humanly possible, and I can honestly look back with no regrets.  
I can understand your fear and frustration, and my heart truly does go out to 
you.  If you should ever want to talk, I'd be more than happy to.  There are a 
lot of great people on this forum, and I gained a lot of strength and support 
from these people, which is what actually got me through my journey.  Although 
it wasn't meant to be in my case, I never gave up hope, because there are 
children who live and
 survive this diagnosis.  Each child is different, each with their own problems 
and severity.  Each child needs to be treated on an individual basis, and I 
think most of the parents here will agree with me on that statement.  Miracles 
do happen and there are children who defy all odds.  

I know it can be a struggle, but don't give up.  This is your baby, and I know 
you already love him like only a mother could.  

Big hugs,

Kathleen




________________________________
From: DENISE DEVLIN <denisedevlin@xxxxxxxxxxxxxx>
To: Tri-Med@xxxxxxxxxxxxx
Sent: Tuesday, May 19, 2009 4:09:35 AM
Subject: (no subject)

My unborn son has been diagnosed with trisomy 18 and a congenital diaphragmatic 
hernia and I have been told nothing can be done, he will not be incubated to 
keep him alive and there is no hope. I can find no details of similar cases and 
wondered if anyone could give me any information. 
Many Thanks
Denise 
                  Building ___ooOOoo__ Rainbows
                      www.trisomyonline.org
                  Families Helping Families On-line
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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