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trisomy 13

post #1 of 15
Thread Starter 
a family member recently had a baby diagnosed with trisomy 13. the baby went home with her parents just this week and is being fed through a nasal tube and is on oxygen. apparently her case is quite severe, and we just don't know how long she might live.

i'm wondering if anyone here has any experience with this condition. are there any good resources/books? i'm just not finding much. . .

my husband and i are going to be helping them out for a week in the next month and i'd like to familiarize myself more with the condition and also with the needs of the parents. any advice would be appreciated.
post #2 of 15
pony, a member here has a daughter with trisome 13. SHe could help you I bet. PM her.


Iam so sorry of the diagnosis. It usually is not a good out come at all.

My friend had a tri 13 baby. SHe passed 6 days after birth.

Blessings,
Char
post #3 of 15
I'm sorry that they are having to face this hardship with their new baby.

I found this website support group by doing a search just now. Maybe they can provide some help and understanding.

http://www.trisomyonline.org/
post #4 of 15
I am sorry. My friend had a trisomy 18 baby who was still born... Trisomys are terrible genetic accidents, but the child still needs all of the love they can get.

Hugs to your friend
post #5 of 15
On another board I use to be on 2 1/2 years ago there was a gal there who's 8th baby was a trisomy 13 baby.

The love that family gave to that baby was increable! They made sure someone was always holding her 24/7 so that every moment that baby has being loved. They made the most of that babies short life. They had family photos made. The baby girl died after 3 short months of life.

I dont think I will ever forget that family because they seemed to special, caring and thoughtful.

I guess all of this to say I am so happy that you will be able to care for the family so they may love and spend all of their time with their dd. What a special gift you are giving this family!
post #6 of 15
Hi

My baby sister was born with trisomy 13. Her name was Sharon, and she lived just a few hours after birth, but she some other anomalies that contributed to her problems.

I was only 5 when she was born, (in 1979) so I didn't understand much, but I treasure the memory of feeling her kick when she was still in my mom, and wish I had been able to spend more time with her. She was beautiful, with a full head of hair. The only real outward signs of her problems were her chin, which was more receded than most, and tiny ears. She had somewhat deformed hands and feet, but I can't be sure if that was from the trisomy or not.

Mom's grieving was, I think, made much harder to work through by the utter lack of information available (especially back then!) and there was no MDC, no web at all, for her to be able to connect with other mothers who had experienced the same problems. She had NO idea anything was going wrong with her baby. Her pregnancy was totally normal before premature labor and an emergency C-section changed our lives.

Anyway, I think it's wonderfully caring that you'll be spending time with your family and have a chance to share in this child's life. I found these two websites that I thought might be helpful:

http://trisomy.org
http://members.optushome.com.au/karens/

The second one is a support site for parents of Trisomy 13 and 18... it's from Australia, but it seemed to have a lot of good info.

Prayers and s to you and your family!!

lizzie
post #7 of 15
Thread Starter 
thank you for your kind replies. the baby passed one week ago. today was her beautiful memorial service.

we are still going to be visiting the parents in a week. initially we were going down to help out with the baby, but now we are going down to help out with surviving another sad week without baby. hopefully we can lift their spirits a little, or at least simply be there as listening ears.
post #8 of 15

Trisomy 13 - Patau's Syndrome (Trisome 13)

Hello,
I just happended upon this site and wanted to connect with you. I read through the posts and am sorry their precious baby didn't make it.

Please tell the familiy when they are ready and need support and want to share their story that our new site has a beautiful area for the Treasure Trisomy Families ---There are a few families who also have just lost their children,(within the last few months.) I have talked this week to all of them as this site is new, They all are willing and want to help eachother through their loss..Please let your friend know that these women have been in her shoes and they are available if she wants to reach out.

I noticed that a few of the posts found our site...I am glad (We just opened this .org site 2/7)--we are hoping to bring Trisomy Awareness out in hopes that the medical communitiy will do the needed treatments for these children...They all are different, some are just too weak with many heart and breathing problems, but some sad to say, aren't givine proper treatment due to their diagnosis. they are just givne a "NO hope" and "Not compatible with Life" you can read the stories--many are encouraged to abort.

Although there have been support sites out there in the past, all the families have been spread out...
With this new site, we are bringing them together and
showing the medical communtiy just what these kids can do...

We'll keep the family in our prayers.
Blessings,
ThereseAnn
http://www.LivingWithTrisomy13.org
http://www.thehealingpowerofprayer.com
http://www.InspiredbyanAngel.com
post #9 of 15

Trisomy 13 - Patau Syndrome Family Support - Trisomy 13 Awareness

We've added many new support resources to the Living with Trisomy 13 site, and a 30 page Survey

Trisomy 13 Family Survey 2007
Compiled, Written and Reviewed by LWT13 Families

http://livingwithtrisomy13.org/Triso...ey-results.htm
post #10 of 15
My cousin died 4 years ago of Trisomy 13. He was 2 months old.

I don't know much about the condition but he lived a bit longer than they thought.

post #11 of 15
:
I'm so glad they had some time with their baby. Let them know of the site please and if they'd like to share their story, have them contact me
off the site. livingwithtrisomy13.org
ThereseAnn mom to Natalia full trisomy 13
post #12 of 15
My brother and sister in law are waiting for a final diagnosis, but two ultrasounds seem to show that their baby (due in November or December) has Trisomy 13. I'd already looked at your site last night, ThereseAnn (do you pronounce Therese like the French do or like Theresa?). Thank you for your site. I'll be passing along the link to them if they haven't seen it themselves yet.
post #13 of 15
Hello,
Therese (treece) with the long eeee sound...H is silent. Like Marianne...
ThereseAnn

Glad you found the site. There is also a message board off the site where many of the families help support eachother.

Blessings,
ThereseAnn
post #14 of 15
Hello I am a singe dad, how has a son with trisomy13 now he is 4 yaer old boy how loves life,there is not much out there in books about trisomy13 on the net there lots
post #15 of 15

It has been my understanding that the mosaic form of Trisomy 13 has a much better prognosis than full Trisomy 13. I am a peds nurse and because of privacy laws I cannot share my experienced with babies with this condition. But I have seen patients with it. As with all severe disorders, there are ethical issues involved, and the families who are expecting a Trisomy 13 baby need to think about how far they want to take medical interventions, and at what point quality of life is more important than quantity of life. In my personal opinion it's often better to hold and love and let go than to test the limits of modern medicine. This does NOT mean the baby's life is not precious or the baby is unwanted. On the contrary-- special babies teach us the depths of love.

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