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Avatar universal

I seem positive and upbeat but dying inside

Trisomy 18 is pure evil. I know she has it and I want it to be different. I want her to live. She is also a rainbow baby for me. I know a friend has a trisomy 18 daughter and she is now 16 with health and developmental delays. I am feeling bad keeping on asking him questions and advice.

All issues she has separately are bad but are able to be compatible with life. She has a mono ventricle brain but it is on the not totally horrid side of this condition. She would have developmental delays. She also has a duel output right ventricle. Surgically fixable.

Most doctors aren't willing to surgically assist in life giving measures in trisomy 18. I am debating calling the best pediatric  heart surgeons in my area. I am unsure if they will help or deny help. My fiancé wants to fight hard for her her get a surgeon to agree. I am waffling between fighting and letting her live as long as she can with out additional pain I will put her through to try to prolong her life.

I am 22 weeks with 18 weeks to go. It is pure fun putting on a happy face and sugar coating stuff so that people around me don't know the true severity of it and give me platitudes. My teenagers know that she has issues and may or may not make it to birth or live long or have health issues for life.

I cherish every moment I feel her move. And every day she is still with me. But I dread them both. I don't want her to hurt. I want her to be at peace.
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Avatar universal
I wish you every blessing in your road ahead. Prayers for you and your family.
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Avatar universal
OMG @ elder baby that was very nice of u to say and vey true....it brought tears to my eyes reading it. It's very true we all shldnt take life for granted and enjoy the lives we have for these are short days...Bert and everyone else I wish U all the best outcomes wit ur babies..
GOD IS GOOD AND WILL LOOK AFTER UR ANGELS
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Avatar universal
My thoughts and prayers are with you
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Avatar universal
I can't advise on the difficulty with trisomy (# any of them are horrible), but I had a son that was incompatible with life - ancephaly/brain and skull not there.  I hear your pain, and joy.  Most (outsiders) only feel it is a tragedy, but if you are willing to look...you see many blessings.   No one knows what you are going through because they aren't you.

I will share this, it helped me.

Imagine since you were little you wanted to go to Italy.  You have spent years dreaming of the possibility, you have studied, saved money and you are planning your life long dream adventure.   Italian food, opera, the sights, history & museums, art...YOU LOVE EVERYTHING ITALAIAN!
You get on the plane, you are so excited.  You fall asleep and when you wake up the flight attendant says WELCOME TO HOLLAND!  What NO, that's not your plan, not your dream since you were little.  You know nothing of Holland.  Not the language, the history, the culture, nothing other than wooden shoes you imagine will hurt.
Now you are there, YOU HAVE CHOICES.  Keep wishing you were in Italy, or explore all Holland has to offer.  It might not be what you planned, or what you believed you wanted.  However, Holland has so many beautiful blessings of its own to celebrate.  The tulips, windmills, it's own unique language, history, culture and art.
Take the opportunity to celebrate each milestone, be thankful you are healthy and have this experience, try to recognize the blessings you do have...especially when you are down.  You may be very disappointed that you didn't make it to Italy and that is okay too.  Frustrated by not meeting expectations of your own and those around you.  That is okay.  Talk to people who support you, and surround yourself with positivity.

I am on this site daily, feel free to message me.  I will encourage and support you anyway I can.
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Avatar universal
I can only share muy story with trisomy 21. I had monoamniotic twins which comes with only 50% chance of delivering one baby alive due to cord entanglement from sharing sac. Had C/S sched for 32 wks..Few weeks after that dx, found out twins prob had trisomy 21 (they did). Then at 19 weeks after domestic abuse one twin started filling up with fluid in abdomen/chest/scalp and was told he wouldn't survive past 23 weeks and I should sever his cord and let him pass in utero to save his twin. I rapidly declined to sacrifice one for other. My heart couldn't do if! I researched and found Dr in Fl who could do surgery in utero to drain fluid but they said baby was stage 4 so not an option. Discussed this and other research findings with perinatologist who just poo pooed me so nothing done. I prayed hard and fluid started resolving but remained around rt lung. Dr said Don't get hopes up. Made it to 29 weeks to surprise of that one dr and had emergency C/S after other twin stopped moving. I did lose my one twin that had fluid around Lung at 13 days. Surviving twin was micropreemie weighing 1lb 14oz and Intervention specialist told me at 4 mos old he would never even hold his head up....would be a blob. WRONG!!! He and I proved everyone wrong. From pregnancy to today I hear things I don't agree with so I question/challenge them. If u feel you know what is best or best decision...go with your gut! Many times parents r ones who fight hardest and win the greatest because of their strength a and devotion for their child!!!! Don't be afraid talking to ur friend for fear of bothering them! Parents staring similar shoes r great resources and usually don't mind the questions. Online boards r great resources too! Just because a Dr says your baby will only live x amt of time or only do x amt of things doesn't mean that is carved in stone but rather written in sand and can be rewritten! Do what you feel is best and right. NEVER stop fighting. Good luck and  God bless! I will pray for you!
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Avatar universal
I lost my first baby at 32 weeks to Trisomy 18. I hope your outcome is better than what mine was.
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