[tri-med] Re: (no subject)

Kathleen,
So sorry you had to go through all this.  I thank you for sharing your
story, it is beautiful how you didn't take the drs words to heart and you
believed in your momminess... you are a great mom, and I am very proud of
you and what you have accomplished.  It couldn't have been easy with all the
other emotions you must have been feeling, but you were strong for your
little girl.
Bless you,
Debbie, mom to Claire (T18)

P.S. No one should ever have to apologize for their religion, or saying
God's name.  I sure won't.  I also did what I could for my child, and then
placed her future in God's hands, as I knew the rest was out of my control.


On Wed, May 20, 2009 at 11:51 AM, Kathleen Hards <
kathleen.hards@xxxxxxxxxxxxx> wrote:

> 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
>
>


-- 
______________________________________________________________________________________________________
Give a man a fish and you feed him for a day. Teach a man to fish and you
feed him for a lifetime.    -Chinese Proverb


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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