Friend's Baby's Brain Stopped Growing

This is the saddest news a parent can receive. The grief is real and so heart-felt. I would suggest a grief councilor and the hospitals can recommend someone with experience. There is a support group for parent who have lost a child, Compassionate friends, http://www.tcfcolorado.org/.

S.,

How heartbreaking that this baby will likely only live a short time. I hope the doctors are wrong about the anticipated life span and that they have her around for many years. I agree with the recommendations made by other moms and I will add that there is a group of professional photographers who will come and shoot photos of the baby for the parents, at no cost, so that they have the photos forever after they no longer have the child to hold. It's a very tender gift they provide to the parents, but a very dear gift. I will send you a PM with more information.

A.,
I am not an extremely religious person but I do believe and a good thing to always remember. If the baby girl is born and only survives for a short time, God gave them this precious gift to teach them to love with all their hearts and to enjoy the time you have with loved ones cause time is way to short. And even though it is a hard lesson and seems heartless it is a very powerful lesson. That time will be their most precious gift. She will always be in their hearts and what little time they have with her everyone who knows her will cherish that time always. Love her, hold her and always keep her in your hearts.
Sorry to hear the extremely sad news.
God bless
E.

I am so sorry for what your friends are facing. Two resources come to mind -- but check them out first to see if you think they'll "fit."

First is the book, "Expecting Adam" by Martha Beck. It's about a woman who find out she's carrying a baby with Downs Syndrome -- very insightful, real, and uplifting.

Second, there is a website called glowinthewoods.com. Here is the welcome statement:
"Mamas of lost babies and potential of all kinds: come here to share the technicolour, the vividness, the despair, the heart-broken-open, the compassion we learn for others, having been through this mess — and see it reflected back at you, acknowledged, understood."

You are a good friend.

It must be heartbreaking to not be able to protect your child.

I have heard that some parents of stillborn babies or very sick babies are very comforted by photography. This is a website/charity that provides beautiful remembrance photos for free for parents. It's call "Now I Lay Me Down To Sleep"

http://www.nilmdts.org/

Hi A.,
My cousin has a son who is down syndrome. They were told he wouldn't live more than 3 months, he is now 26 years old and wonderful as so many ds kids are. Every case is different but no one can say for sure what the future brings. My best advice is to love every moment and treasure what you have for a life time but to also allow yourselves to move forward, if she lives for only a short time let it be a treasured visit from an angel that will always be with you in spirit but she would not want your lives to become lives of mourning. All my best and God bless.
SarahMM

You have received very valuable advice already, I have lost 2 babies, 1 was stillborn and 1 was born extremely premature. It was so difficult to go through these experiences. I had a friend who was with me for the delivery of my stillborn son, of which I an very grateful. People just don't know how to respond so they usually don't say anything, and pretend it didn't happen. After losing my child born at 26 weeks gestation, 25 years ago, I was ignored. People who came to see me in the hospital while I was still pregnant pretended not to notice after. The best advice I will give you is to be there every step of the way. Encourage her to be happy that her child is too perfect to have to stay here. She is a choice woman to have such a noble soul born to her. Arrange a photographer to take some pictures of her baby. And make sure you encourage her other friends to visit before and after the baby is born. She will need to talk and grieve. Its great to know she has a good friend like you.

I have also had news of my baby's fatal condition. It is so agonizing and also so so lonely. I found a support group that was for couples that had lost a baby shortly after birth or during pregnancy. NO ONE else can relate to what your friend will be going through like someone who's been there. This group was in another state but please google to see if there is something like this in Colorado.

My friend was 6 weeks from her due date and went in for a non-stress test. They found a very small baby on the ultrasound, and right at that moment they saw her heart stop. They did an emergency c-section. She only weighed 3 pounds (at that gestation, she should have weighed more), and they had to do CPR for 8 minutes before she started to respond at all. They told her parents that she would probably not make it more than a few days, and they started to look into burial gowns. But she didn't die. They said she'd be blind and deaf, and basically a vegetable. But she can see and hear! Then they said she'd never smile or have any real control over herself. She smiles and watches her big brother move around the room. When the parents needed a new car, they bought a van so it could accomodate a wheel chair in the future. But now they're starting to talk about when she learns to walk.
The baby is almost a year old now, and only weighs 10-11 pounds, but she's still proving all those doctors wrong.
We think we're so smart, with our doctors and machines and things. But we just don't know what will happen.
The only thing that I think can bring any sort of comfort is some spiritual knowledge. I believe that some children are too perfect to live in this corrupt world, and they are spared the pain of this life. They come just for a little while to get their body, then they go back home. That doesn't offer too much consolation when you are expecting to have a child with you for a lifetime. What really helps is to know that when we die, we will see them again, and that we will be able to have our children again, only healthy and free from the pain of this world.
If your friends would like to reach out for some spiritual comfort, I know some people who would be happy to talk to them about this stuff. Just send me a private message.

I don't know how to answer the "why" this would happen - I would just encourage them to savor every moment they have with their precious little one. We all only have so much time on this earth - some just dont have enough. Perhaps when they are ready, they could step out to pursue a support group for grieving parents. I have heard there is one in Parker but I don't know the name of it. Perhaps Parker Adventist Hospital could be a resource to them.

God bless you and may he comfort you in your sadness.

Here's my advice, get her a doula. A doula can help in this situation by not only making sure the birth goes as smoothly as possible, but can also help with some sort of ceremony, either personal or public. Having someone around who is only there to listen can be really helpful.

Oh...I really feel for your friend. I haven't gone through being the friend of someone going through this specific situation, but I have been the friend of several others going through terribly hard things in their lives...including having to do with the death of a baby before birth, cancer at a young age, etc. The biggest thing is to remember not to put your friend in a position where they feel as though they need to support you during the feelings you are going through...lean on someone else for that. Just love and be there for them...to offer help with their other child, to listen without trying to fix anything for them, to not instruct how they should or shouldn't feel, etc. Her doctor or the hospital where she plans to give birth may have resources for support groups of other parents who have gone through or who are going through this. I know from the past that has been the case for other situations of people I know and for myself. (((hug)))

I am so sorry, my thoughts and prayers are with you and the family.

A.:

All I can suggest is that they get some counseling and support during this rough time. They can learn that it is not their fault and how to deal with their grief. Good luck.

Although not been there, my niece was diognosed with water on the brain and spinal bifada before she was even born. They told my sister that she should just abort the baby because she could not serveve and even if she did she would have no life. Well she is now ten years old, yes she is paralized from the knees down, but either wise she is a normal preteen girl. I am sorry to hear about5 this but dont give up, god always gives us hope, gling to that hope, it will get you threw. my prayers are with you.

Such heartbreaking news for any parent...

There are many support groups and one that comes to mind is Rowan Tree Foundation in Parker, which is a support group for parents who are grieving over lost children.

From someone who has lost a baby unexpectedly, the best thing that my friends and family did for me were to visit and let me talk. Depending on how your friend is, she just may want to talk all about it, and when the time comes show pictures. I just needed to talk about what happened and my thoughts on it. I didn't need to be judged for my feelings but I know I always had someone I could call to talk to because I was in pain. My friend came by to see me and she helped me with my other little boy and just was there and gave me company. We watched movies, she let me cry when I needed to, and allowed me to not talk about it when I wanted to.

Your friend may NOT want to talk about her experience as well -- some can't stand bringing out the pain by talking about it. I agree that she should see if her hospital or area has a support group. Don't push her to do more about her grieving or tell her when she should be getting over it or how to deal with everything. Just be there.

I read a book by Karen Kingsbury,called "Summer", where a women had a baby who's brain grew on the outside of her head. The baby was also predicted to die. They embraced the time they had with their little girl inside the womb. The whole family, brothers, sisters, grandparents and all those who would love this child while it was growing were present for the birth. After the child was born, they all gathered in the delivery room, held the child and said their goodbyes to her. One of the people even bought an outfit for the little girl. It was all very sad, but the love of family and of God saw them all through a very difficult situation. I would suggest that she enjoy the time God has given her. All life is precious and all life is from God. Nothing is waisted.

How do they know the brain has stopped growing? I'd hope they would have it wrong considering the inaccuracy of ultrasound. But they should still be prepared for the worst.

SHARE and the Compassionate Friends are support groups in the area for those who have lost children. I don't have personal experience with them, though.

Tell her to be thankful for the time they've had with her growing and if she's born alive then tell them to be thankful for every day. Love her with all their heart.

These parents found out their son had Trisomy 18. They had 99 days together.

Have them watch this video
http://www.ignitermedia.com/products/iv/singles/570/99-Ba...

and this is their blog
www.ninetynineballoons.com

Even for just the short time we may be graced with our loved ones they touch us and impress on us how to be better.

My sister just passed away a little over a year ago at age 33. She was both physically and mentally handicapped. She touched everyone in her life. She has made me want to be a better person, softer heart, more compassionate. As it was very hard I wouldn't trade anything. I only wish I could've been a better sister. Tell them to be the best parents they can be, love her. If only a short time is allowed then the family should cherish that time together, and keep going after because the family is still there. Give your friend a hug for me.

My daughter was born this way. My placenta stopped growing for some reason and she was born with an undersized head. She was healty physically and continued to grow. She was the size of a 9 year old with a toddler mind. She developed physically just as if she was normal sized. She lived for 33 years at home with us. There was a doctor that told us, "this is the way it is, she has problems; but we don't know how far she can go or what she will be able to do. You just have to do what you can." He didn't put any restrictions on what that would be. Don't dwell on the 'what ifs'. live the time you have, not the time you thought you would have. You cannot predict the future. Life was not easy for our family, but it was well worth it. Parents of handicapped children actually go through two deaths. The death of the child you thought you would have and the death of the one you did have. They will continue to try to figure out why, but sometimes there is no why. We were part of a parent organization when she was small and it was a big help. All the parents had handicapped kids. One couple had a blind, deaf and very gifted child. While it was never easy, I don't regret the time we had together. I went on to have two other "normal" children. She has been gone for just over a year and while I know she is able now to do all the things she couldn't before, we miss her a lot. Sometimes the pain is so bad I think my heart may burst, but my Lord and my family are there for me; and with time, it does get easier to handle.

I haven't been through this myself, but I have heard this a few times on Dr. Laura. Being pregnant and giving birth is a gift and a miracle. Your friend should enjoy this time that her baby is in her womb and cherish every moment with her baby after she is born. In some cases, all docs can be wrong, miracles do happen. You can go on Drlaura.com and read some emails she has received from listeners on this very thing. They will inspire you and your friend. There is nothing worse than losing a child, but the moms who know their babies will probably die and choose to live every moment with them holding them until their last breaths are amazing. That is true motherhood. Instead of focusing on the negative, encourage your friend and share with her about what a blessing it will be to have that little gift in her arms if only for a few months. I can't imagine the heartache, but it needs to be looked at from a different perspective instead of just the negative so that she can enjoy every moment that is given to her. Take care.

Dear A.

I fill for your friend and will pray for the little one and her family. As she is your frend. The best you can do for her is be their when she is ready to talk and give her confert.

C. J.