My brother and his wife are 25 weeks pregnant with their first baby. They just found out that the baby has an extra 18th chromosome "trisomy 18" and probably won't survive more than a month if she's even alive when she is born. Has anyone ever been through this? I want to be there for them but it doesn't seem like i can say or do anything that will make them feel any better.
She has decided to carry the baby to term. She said if there is any hope that she can at least hold her and see her alive, even if it's just for a few minutes, then she wants to take that chance and get as many pictures as possible. Thank you all for your responses i really appreciate all the information i received on this!
http://www.trisomy18support.org/
I have a friend who began the trisomy 18 support organization (site address above) following her own experience with a child with Trisomy 18. I suggest you visit this website.
I don't have personal experience but I am a Labor and Delivery nurse and taken care of numerous patients who were terminating their pregnancies for Trisomy 18. It is not compatible with life, meaning there is no chance of their child surviving. My experience is that patients really don't want to hear stuff like there is always next time, it will be ok, and such. I usually just tell them that I am sorry for their loss, pray that God will comfort them and cry with them. It is a heartbreaking experience and there is very little to say or do. In regards to termination, it is personal decision. I have seen people who continued their pregnancy because they felt like it was the only life their child was going to have and they cope very well with the grieving process. Some patients can't tolerated the remaining 3 months feeling in all other ways that they are having a normal pregnancy and knowing their child is not going to live very long. It is very h*** o* a relationship also. Mom has felt the baby move and carries the baby with her everyday and Dads usually haven't built much of an attachment yet. The grieving process is often very different for both of them and can be a hardship on their relationship. I suggest doing some research on the grieving process so you can recognize the stages as they go through them. This will help you be at ease with their responses and just be there to listen. Unfortunately it is a process they must work through and you can just support them. Don't forget about your own grief at loosing a niece.
We prayed for a young couple in OK that was expecting a baby with this condition (they were friends with people we went to church with). Her condition was pretty bad and was expected to die upon delivery but she lived about six weeks. Some of the most beautiful pictures I've ever seen in my life is when this couple along with their three year old son had professional pictures made with this little baby before she passed. I remember thinking that they showed such joy but also such sadness. I do know this couple was given the option of a late term termination but because of their steadfast faith, they decided to continue the pregnancy and let God have his will with her and them. I'm sorry to hear what your brother and his wife are going through. I hope they will be a great comfort to one another and that God will shower them with strength, wisdom, and peace.
Unfortunately my cousin's baby was diagnosed with Trisomy 13. The dr's told her the baby wouldn't survive after birth and if she continued to try and carry full-term the pregnancy would be h*** o* her body. Supposedly the case was severe and the baby was already severely deformed. :( You could tell from the sonogram that the little head was elongated. The dr's recommended she abort, which after a long, careful decision which was very devastating for her, she did. I've actually googled this on the web and it's no ones fault, meaning no one thing other than nature and God having this in his plan for this angel. I hope your brother and his wife the best and will keep them in my prayers. They'll make it through!
L.,
I am so sorry to her about your brother and his wife. I have a friend who lost her first daughter to trisomy 13. I'm not sure if it is similar but they have a website that they have you would like contact them for support. The name of website is kambrys-light.com. I will be praying for you family.
L.,
Unfortunately there is nothing you can say or do other than be there to listen and support them in what ever decision they decide to make. My son was born with Trisomy 21 more common known as Down's Syndrome. Luckly for us these babies live the majority of the time.
With trisomy 18 also known as Edwards syndrome only 10% live for a year after birth and they don't even give statistics past one year. The majority die before birth or very shortly after. It is not hereditary so they didn't "do it" and it is very very unlikely to happen in future pregnancies.
Really the only thing I can tell is to make sure they got an amnio before they decide if their decision is to terminate. If they don't have an amnio then they don't "know" the baby has trisomy 18. We denied ours because we wouldn't terminate regards of the results but as I mention earlier Down's babies live T18 tends not to.
Just be there for them and don't use the cliches of you can have another, God knew you were strong thats why he gave you this baby and I could never do what you are doing. Just tell them you love them and are there for them
Ok-I wouldn't tell your brother this but my thought is keep praying. My cousin found out she was pregnant earlier this year and in May they told her that they believed her baby had a HORRIBLE brain disorder and they ran some tests and said that it showed signs of having trisomy 18 and a few other complications. Turns out the doctor was completely wrong! She doesn't have the trisomy 18 or the brain disorder. She does have a complication with her eyes and they're not sure if she'll be able to see or not but that's a BIG difference from trisomy 18. She was born the end of August and is doing great.
At this time as I sad before...PRAY! Pray to God for a mirical and maybe He intends for it to be and maybe He doesn't-you just have to put it to Him. Be there for your brother. I'm not sure there is anything to say...who could imagine such a horrible thing. This is supposed to be the happiest moments in their lives. Love and support...
I will pray for you and keep us posted!
K.
http://tigerbridge.blogspot.com/
I'm very sorry for your news. My prayers are with your brother's baby.
S.
After losing my baby a wonderful friend came to my house. All she said was "I'm so sorry" and handed me a box of kleenex. She did nothing more but she did more than what anyone else could of done. I would suggest keeping the words to a minimum and just listen. This is one of the hardest things to go through. And you don't want to hear about how your baby will be in heaven. Not at this time.
Check into http://nowilaymedowntosleep.org/ they are photographers that specialize in capturing the last moments of a family in these situations.
I am so sorry.
L., I am very sorry to hear your news. Its hard to know what to say because what makes one person feel good makes another feel worse. I speak from experience when my daughter passed away with sids. What made my husband feel better made me feel worse and vise versa. Being there physically without saying a word sometimes is the best thing you can do. I do know this though, I'm glad I had my daughter and I'm glad there is a Heaven where we will unite one day. I don't regret having her and I'm glad that I had her for 3 months and got to hold, love and know her instead of miscarrying or still born or not having her at all. In a million years I will be with her about a million years. Thank you God for preparing us a Home. God Bless
I don't know anything about trisomny 18 but my brother and his wife had a baby with a congenital birth defect right after I had my first child. We all knew it would be touch and go and he probably wouldn't survive, but hoped for the best. Unfortunately that is not what happened. I just tried to be there as much for them as I could and respect their wishes. We prayed about it a lot and still try to remember him and keep his memory part of the family. You probably can't say or do any one thing to make them feel better but you can support them during this time, that is what my brother said was most helpful.
I do not have first hand experience with having a child with the disorder but I found the trisomy 18 foundation webpage and they do advice on what to do or say if you have a friend who has a child with the disorder.
here's the link:
http://www.trisomy18.org/site/PageServer?pagename=parents...
I hope it helps , my prayers are with you and your family; this must be devastating for them.
God bless,
First of all let me tell you that I sorry. I have been alerted of this diagnosis very recently. I had never heard of such a thing. I will attach several blogs to families who have suffered a loss or who are still pregnant. I think the best comfort is knowing that other people have gone through this & what to expect. Many prayers as they endure this path. Good luck!
http://poppyjoy.blogspot.com/ They are expecting a little girl with the disorder.
http://marygracesummons.blogspot.com/ They are expecting a little girl with the disorder.
http://www.conorbootheandgirls.blogspot.com/ Their daughter Copeland survived for 8 days before passing at home.
http://thestanfieldjourney.blogspot.com/ They are expecting a little boy with the disorder.
http://jonathanjarededwards.blogspot.com/ Their son was born & passed away.
http://www.trisomy18.org/site/PageServer
Hope this helps & please keep us posted.
I am a childbirth educator and doula. Recently I attended the birth of a baby who had Trisomy 18. There are a number of great resources available to help your brother and SIL begin to process this. Feel free to contact me privately via my contact information on my website if you want to talk.
Okay, well I don't have any words to give you, but I did want to suggest a great book. The author, Karen Kingsbury, recently released a book called, Summer. I've read it and it addresses this issue- baby dying shortly after birth. It's a different problem in this baby, but the way she approached the subject and had the characters deal with it was awesome. I would actually recommend this book to anyone who has dealt with the loss of a child. You might read it before giving it to her, so you can get an understanding, as well. It is a fiction book, but I'm telling you, it's good and I've never actually dealt with a situation as this or known anyone (well, I have a friend who lost her baby, but it was before I met her), but it helped me to understand it.
