[tri-med] Re: Full Trisomy 17

Hi Theresa,

First of all I'm glad you found this list. They are a wonderful 
source of help and support. Many of us have been told the same eg, 
that the child will not survive birth etc etc. I am here because of 
our grand daughter Tess who has Trisomy 18. We were told to take her 
home to die, but here we are eleven and a half years later, with a 
child that (yes) has multiple problems, but it dearly loved, and we 
are glad we gave her the chance to live her life. It is not without 
it's price to pay. Tess's parents divorced when she was five years 
old. Tess spends on average four nights with her mother, and three 
nights with her father (our son) and half the school holidays. I 
shared in Tess's care for the first 5 years of her life. She goes to 
school now, so I get to see her for a couple of hours on the weekend, 
and maybe a couple of days during the school holidays. Tess attends 
an ordinary school which has a special unit for special needs 
children. Tess has a small VSD and now has developed pulmonary 
hypertension (which can be fatal). We just enjoy one day at a time 
now. Tess does not walk, or talk, is now tube fed, but did eat orally 
for most of her life. She laughs, loves, pouts, is stubborn, has a 
sense of humor, understands most of what is going on around her, in 
fact became the joy of my life as her Nanna.

I should warn you that if you give your heart to your Trisomy child, 
you will be hooked for ever, as they seem to be born with a magic 
potion that is sprinkled over you. This means that as long as they 
live, you are on a roller-coaster of highs and lows, laughter and 
tears as you watch their heroic struggles over the months or years, 
but you get much more back in the most genuine love that you can receive.

We live in Australia, so can not advise you on sympathetic doctors, 
but I see now (after reading other responses to you) that you have 
been given suggestions by other list families.

However long your baby survives, it will be the most profound 
experience you will ever experience in your life. I hope all goes 
well for you, whatever you decide.





At 12:46 AM 15/07/2008, you wrote:
>A few weeks ago I emailed you all with the diagnosis that my baby has full
>Trisomy 17. I am currently 29 weeks pregnant. There has never been a
>reported live birth of a baby with a full Trisomy 17. In fact doctors are
>baffled by the fact that I am still pregnant as no full T-17 pregnacy has
>ever lasted past 16 weeks gestation.
>
>I have visited The childrens Hospital Of Philadelphia MFM as they are ranked
>#1 in the country for cardiology and we have found that this baby has a
>severe heart defect. This baby has a single ventricle and Truncus
>Arteriosus. I have only found 3 cases of this ever reported in live people.
>All babies with this rare disease have died shortly after birth with the
>exception of one who was succesfully treated with surgery and is now 13
>months old.
>
>They told me this baby would not live past one day if he survives to birth.
>
>I am asking anyone in this community who has any information on this rare
>disorder in infants to please email me. Doctors have given up hope and they
>will not even attempt to do the surgery due to the fact the baby has T-17.
>
>I cant even find an OBGYN right now who will deliver this baby. My OBGYN has
>told me I have to find another doctor as her hospital will not let her
>deliver a high rish baby like this. I have visited 4 others hospitals and
>OBGYN's and as soon as they hear my story no one wants me. I feel like such
>a reject of the medical system right now. Like I have a contageous disease
>that no one wants to catch.
>
>Anyone with any information please email me as I really dont know what else
>to do at this point. I feel so hopeless. Thank you all for your time in
>reading this.
>
>Theresa
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>
>
>
>
>--
>No virus found in this incoming message.
>Checked by AVG.
>Version: 7.5.524 / Virus Database: 270.4.10/1550 - Release Date: 
>13/07/2008 5:58 PM

Jocelyn, loving Nanna to Tess with Trisomy 18, age 11 years
.  

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

Other related posts: