[tri-med] Re: 27 weeks pregnant with T18-long response

Maureen:
Thank you for your kind and encouraging letter.  Maybe I'm not thinking 
straight - I have read so many articles, letters, made so many phone calls, 
etc...  When you say you called hospice, where did you find them?  Were they 
through the hospital?  Were they recommended?  I guess what I am asking, is 
where can I find someone in my area?  I live in Fort Worth, if that helps at 
all.  

Many thanks again to all who have been trying to help.  I haven't given up just 
yet.

Kathleen




________________________________
From: "Maureenroheny@xxxxxxx" <Maureenroheny@xxxxxxx>
To: tri-med@xxxxxxxxxxxxx
Sent: Sunday, March 29, 2009 8:11:48 PM
Subject: [tri-med] Re: 27 weeks pregnant with T18-long response

Dear Kathleen, Our son was born with Trisomy 13.  We knew the  diagnosis very 
early on and continued the pregnancy.  I had virtually no  support from our 
doctors.  I contacted hospice on a lark one day; because,  I basically had no 
where to turn.  A pediatric nurse and social worker were  assigned to me right 
away.  It was like being thrown a life  preserver!  Contrary to what you might 
expect, they never tried to  influence our decisions about our baby Thomas.  
They served as advocates  for us.  The nurse went to ultrasound appointments 
with me and helped me  get a new OB and a pediatric cardiologist, who did an 
echocardiogram while  Thomas was still in utero.  Our goal was to know as much 
as possible about  Thomas, so that we would have as much information as 
possible, in order to make  decisions about Thomas' care after he was born. Our 
nurse 
helped us formulate a  birth plan, also, to make sure that everything we 
wanted for Thomas was  done.  She also convened an ethics committee meeting at 
the 
hospital  before Thomas' birth, so that everyone who would be involved in 
Thomas' care was  "on board," and understood our family and our wishes, before 
he 
arrived. We even  had the same nurses assigned T/O our stay at the hospital.  
Because of  all this preparation, the staff was really prepared for us.  We 
had a  neonatologist and palliative care doctor, as well as hospice staff and 
the  pediatric cardiologist with us T/O the birth and afterward.  NO ONE  
pressured us to make any decisions, but instead provided us with all the  
tools, 
medical info. and support needed for us to make our decisions in the  best 
interest of Thomas and our family.  Thomas was baptized  immediately upon 
delivery. 
His brothers and other immediate  family all held him. Our parish priests 
came.  We took many  pictures.  The cardiologist performed another ECHO and 
found that Thomas'  heart was in poor condition and that he likely would not 
survive even if he did  not have trisomy 13.  Thomas had one respiratory arrest 
(stopped  breathing) and he was immediately resuccitated, as we had not decided 
yet  what we were going to do.  Breast feeding specialists helped us with  
Thomas, but he was not able to suck, and the nurse felt he would never be able  
to.  Thomas lived 31 hours.  Toward the end of that time. he  began to have 
seizures. We did not what Thomas to suffer at all, so we permitted  the staff 
to 
give him pain and seizure medications.  Because Thomas would  likely not 
breathe or eat on his own, and his prognosis was so poor, we decided  to let 
him go. 
He passed away peacefully and comfortably in my arms.  I felt privileged to 
carry Thomas and to have had the great blessing of being  his mom.  My best 
advice to you is to find a doctor and hospital that will  support you.  This is 
YOUR child.  Only you can decide what is best  for him or her.  You have 
EVERY right to as much information  about your child (before he is born and 
after) 
as you wish to have, and to have  a health care team that will advocate for 
you and your child. I will pray  for you. Maureen-wife of Nader, mother of 
Nader jr., Noah, Nathaniel, and Thomas  T13 April 2004
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                       www.trisomyonline.org
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