Prayer for baby born with Trisomy 18-- please read

[wy_kid_wrangler04]

This really hits home because when I was pregnant with ds5 I was told he had trisomy 18. I spent the first almost 6 months of my pregnancy thinking my baby was going to die. Then they did an amniocentesis and that "proved" he had downs syndrome :glare: Ds was born fine.

 

 

This baby indeed was born with trisomy 18. Here is a link to a facebook page set up for her and this is today's update:

 

Day 19 - Crystal had several episodes early this morning around 5:30am where she stopped breathing and an oxygen bag (which gave more dosage of oxygen than the one currently attached to her nose) was administered to her to revive her. The doctor called this afternoon and brought up the possibility of having to connect her to the ventilator (oxygen machine), for which she may not come out of, and in this case we should be prepared to decide to pull her out of it and accept the worse. I know that doctors mean well, but I felt it was too early to suggest death for my child. Another preparation we are making is to have Crystal go through G-tube surgery to place a "button" on her stomach to administer direct feeding (as oppose to the nasal feeding tube which she has right now). Please continue to stand with us on prayer that God will give us wisdom as we make decisions for Crystal...

 

 

"If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him." - James 1:5

 

 

Please please PLEASE pray for Crystal and her family. My heart is simply breaking for them. God is carrying them through this!!

 

 

ETA: Sorry I forgot to put the link. Here is the facebook page. You can see updates and pictures.

Edited December 22, 2011 by wy_kid_wrangler04

[Wendi]

Praying for grace, wisdom, peace, mercy, and blessings on little Crystal and her family.

 

Wendi

[LisaKinVA]

I will pray for the family.

 

20 years ago, my niece (my brother's first baby & our parent's first grandchild) was born on 12/15 with Trisomy 18. She died on my birthday, 15 days later.

[Celia]

My neice was born with Trisomy 18 2 years ago last month. She died 22 days after birth.

[gardenmom5]

a dear friend spent several weeks with her friend after that friend's dd was born with trisomy 18. she lived for six weeks. my df, said there was a tremendously sweet and peaceful spirit, around the baby, as well as in the house during that time.

[Amber in AUS]

Keeping them in my thoughts.

[Annie Laurie]

Have you ever seen this video about a baby named Eliot who was born with Trisomy 18? He lived for 99 days and the video is a beautiful celebration of his life. His parents decided that they were just going to enjoy him and celebrate every day they had with him. I can't imagine the courage it took to do that and know they were going to lose him, but it's a very beautiful story. Warning: I bawled my eyes out the first time I saw it.

 

 

Praying for Crystal and her family.

[wy_kid_wrangler04]

Have you ever seen this video about a baby named Eliot who was born with Trisomy 18? He lived for 99 days and the video is a beautiful celebration of his life. His parents decided that they were just going to enjoy him and celebrate every day they had with him. I can't imagine the courage it took to do that and know they were going to lose him, but it's a very beautiful story. Warning: I bawled my eyes out the first time I saw it.

 

 

Praying for Crystal and her family.

 

 

I am going to watch it now.

 

 

 

ETA: :crying: Wow. All I can say

Edited December 22, 2011 by wy_kid_wrangler04

[lovetobehome]

I was also told while pregnant that my baby had T-18 or DS. We had follow-up ultrasounds that showed choroid plexus cysts on his brain, and 2 holes in his heart.

I will pray for this little one, it is so heartbreaking.

My little one is now 4.5 years old, and perfectly healthy, no T-18. No DS either.

Makes me wonder how many people abort because the tests showed their babies were "not perfect"

I am sad for this family, I can imagine a small piece of what they are going through, and I know how devastating it felt to me....

[Tohru]

I will pray for the family.

 

20 years ago, my niece (my brother's first baby & our parent's first grandchild) was born on 12/15 with Trisomy 18. She died on my birthday, 15 days later.

 

:grouphug:

[ForeverFamily]

:grouphug: My heart goes out to the family. I had a cousin that was born with trisomy 18, I believe she lived to be about 3-5 months old. She passed away a week before she was scheduled to have heart surgery. The doctors told my aunt they didn't expect her to live very long, an hour or two, after she was born. So sad:crying:.

 

There is a support group called S.O.F.T. (Support Organization for Trisomy) for families who have had children with trisomy 18. I know that for my aunt and uncle having that support from others was, and still is, a huge blessing. I was blessed enough to have had the opportunity to volunteer for SOFT one summer, those cute kiddos were some of the most special sweet kids I have ever met. That was one of my favorite summers.

[Mergath]

Makes me wonder how many people abort because the tests showed their babies were "not perfect"

 

There's a big difference between "not perfect" and knowing that your baby likely won't even survive until the birth. You never know who here may have had to make that heartbreaking decision, so don't judge.

[Kate CA]

There's a big difference between "not perfect" and knowing that your baby likely won't even survive until the birth. You never know who here may have had to make that heartbreaking decision, so don't judge.

 

She wasn't judging. She had to go through this herself--she was told her child in her womb had "T-18 or DS" and it was untrue. So she knows quite well how someone would feel. I don't think you ought to be judging her. Those tests *do* have a shocking history of incorrect information.

[Mergath]

She wasn't judging. She had to go through this herself--she was told her child in her womb had "T-18 or DS" and it was untrue. So she knows quite well how someone would feel. I don't think you ought to be judging her. Those tests *do* have a shocking history of incorrect information.

 

The implication- whether intentional or not- was that some people abort because a trisomy 18 baby is a bit less than perfect. It's not a cleft palate or club feet. My dh was with a woman for several years before we met, and she became pregnant with a baby that amnio showed had trisomy 18. They made the decision to abort, and he still grieves for that baby to this day, though he believes they made the right decision. If someone told him he chose to abort their baby because the baby "wasn't perfect," he'd probably punch them, honestly.

[wy_kid_wrangler04]

Makes me wonder how many people abort because the tests showed their babies were "not perfect"

I am sad for this family, I can imagine a small piece of what they are going through, and I know how devastating it felt to me....

 

Dh and I had this same conversation many times. I can not tell you how many people URGED us to abort because of trisomy 18. Then they confirmed downs syndrome by test that is "completely accurate" heartbreaking!

 

 

She wasn't judging. She had to go through this herself--she was told her child in her womb had "T-18 or DS" and it was untrue. So she knows quite well how someone would feel. I don't think you ought to be judging her. Those tests *do* have a shocking history of incorrect information.

 

 

I agree with you. We had people try to talk us into aborting to "save the heartache" Our DOCTOR even tried telling us the benefits vs. risks of abortion when we were told ds had trisomy 18. THEN when it was "confirmed downs" he said- "well this is easier to live with, isn't it. Still not good but easier" :eek: :blink:. We were done with him right then and there. The doctor I had with my other 3 dc had retired and THAT was the replacement.

 

Trying to not make this an abortion debate but more to the original post about the baby who is struggling with trisomy 18-- it is very devastating news to be told your child HAS trisomy 18-- not could have. The doctor himself said over 50% abort- but that does lead to the question, how many perfectly healthy babies are aborted because of false information. its not a judgmental statement, its a concern from mothers who have had that false test result. If we were to have any more kids we would NEVER had any testing again because it would not change OUR personal decision but would prevent alot of stress and heartbreak.

[Canadianmumof5]

Prayers for this little one.

[SueinNC]

I was also told while pregnant that my baby had T-18 or DS. We had follow-up ultrasounds that showed choroid plexus cysts on his brain, and 2 holes in his heart.

I will pray for this little one, it is so heartbreaking.

My little one is now 4.5 years old, and perfectly healthy, no T-18. No DS either.

Makes me wonder how many people abort because the tests showed their babies were "not perfect"

I am sad for this family, I can imagine a small piece of what they are going through, and I know how devastating it felt to me....

 

We were told at 10 weeks, our baby girl had trisomy 7 mosaicism. We continued with the pregnancy despite pressure to abort. She was born perfectly normal and healthy.

 

Prayers to Crystal and her family. :grouphug:

[Kate CA]

Trying to not make this an abortion debate but more to the original post about the baby who is struggling with trisomy 18-- it is very devastating news to be told your child HAS trisomy 18-- not could have. The doctor himself said over 50% abort- but that does lead to the question, how many perfectly healthy babies are aborted because of false information. its not a judgmental statement, its a concern from mothers who have had that false test result. If we were to have any more kids we would NEVER had any testing again because it would not change OUR personal decision but would prevent alot of stress and heartbreak.

 

I completely agree; especially with the bold. :grouphug:

[Veritaserum]

My cousin's dd had trisomy 18. She lived for less than a week. :grouphug: :grouphug: :grouphug:

[gardenmom5]

I was also told while pregnant that my baby had T-18 or DS. We had follow-up ultrasounds that showed choroid plexus cysts on his brain, and 2 holes in his heart.

I will pray for this little one, it is so heartbreaking.

My little one is now 4.5 years old, and perfectly healthy, no T-18. No DS either.

Makes me wonder how many people abort because the tests showed their babies were "not perfect"

I am sad for this family, I can imagine a small piece of what they are going through, and I know how devastating it felt to me....

 

if you compare statistics from before these prenatal tests were available and now, about 90% reduction in babies born with them.

 

I was in my 40's when dudeling was born, I didn't bother with many of those tests. I had to sign waivers too.

[lovetobehome]

My heart breaks for anyone who has had a baby with t-18 or has a loved one with a t-18 baby. It is just a heartbreaking, difficult, painful thing to lose a baby, and T-18 babies are near and dear to my heart. I have a list of departed T-18 babies I pray for daily, I suppose it affected me so deeply when we were told Samuel had t-18 or DS, that I feel compelled to pray for those little ones all the time.

 

I truly apologize if my comment came across as judgmental, it was not meant to be, and it was not meant to be a controversial comment about abortion. I did not mean at all to even bring up how a family or parent might deal with making decisions, that is so personal and I would never want to discuss that without being invited into the discussion, privately. I know loads of people felt like they should comment on how *I* should handle our t-18 diagnosis, and it didn't make it any easier for me. There is nothing easy about t-18, and no easy path when you know you will lose your beloved baby. What I meant in my original comment was, I wonder how many unaffected children are aborted because the tests showed their babies were "affected" or "not perfect." It was not a judgement against any choice or course of action, I just feel sad that the tests result in false positives sometimes. For that reason, my husband and I decided we would rather not have the tests if we have a future pregnancy, because in our case the tests and ultrasounds were unreliable and caused a lot of heartache. For others, it might be preferable to have the tests to know what to prepare for. We have options with the testing, and we don't judge someone else taking another course of action.

Also, I used the term "not perfect" because I have a beloved little man in my life who has DS and I don't consider him handicapped or any other label, he is who he is and I adore him. I was trying to be sensitive to those who might not like labeling a child according to their 'disability'. I meant to be sensitive, not to cause any hurt. I am sorry.

I will be praying for Crystal, and for all those who love and have lost a baby to T-18. I send this note with only love and peace.