Does Anyone Know of Someone Who Has Delivered a Baby with Potters Syndrome?

I also do not have any experience in this but I did want to let you know about an organization called Now I Lay Me Down To Sleep. It is a charity organization of photographers. If you go to their website www.nowilaymedowntosleep.org, they have forums for parents to talk to each other about what they are going through and ask questions. I know that I have seen some parents talking about Potters Syndrome. I am sorry you are having to go through this.

I'm praying for you and your child as well. I second the recommendation for Now I Lay Me Down to Sleep. I'm a photographer who works with families as well and having a beautiful document of your very precious baby is so important. However, it's not over until it's over, so meanwhile, I'm praying for a miracle for you.
K.

L., I am holding you, your precious baby, and your family close in prayer. With love, M.

This literally makes me cry! How heart wrenching! I don't have any information on Potters Syndrome for you, but I prayed for you and your family. May God grant you the strength, guidance, comfort and peace you will need.

I don't know anyone but I will certainly pray for you. Carry this little one God has given you until the end and pray you get to hold him when he is born. God knows best and has a plan for your life even though this may seem very hard right now. He gives us strength to endure even the hardest trials for a season and "joy comes in the morning". I do know someone who had a perfect little boy that died 9 minutes after he was born and they held and had time to say goodby. Much love and prayers will go out for you and your family at this time.
There are services that come to the hospital and do little feet and hand prints and take pictures for your memories and they are wonderful. Maybe someone will mention it for you.

I'm so sorry to hear that you are going through this. I have no firsthand experience with this, yet I feel for you. I wanted to share a book with you, though, that does deal with this subject. It's called, "Summer" by Karen Kingsbury and is part of the "Sunrise" series. When I read the book, it touched my heart that some women have to go through this sort of thing. If you need some comfort in this time, you might read the book. It was amazing how the whole family dealt with the tragedy. Just a thought.

I am so sorry -- many many prayers going your way.
I have never even heard of Potter's Syndrome, but can I suggest Now I Lay Me Down To Sleep .... look them up online if you know nothing about them. I hear they bring many many years of joy in addition to the short time you might have with your baby -- and pray over your baby -- God works miracles!!!

L., I am so sorry for what you're having to go through. I don't now anything about Potter's Syndrome but I did want to make you aware of a resource that is available to you free of charge.

There is an organization called Now I Lay Me Down To Sleep which is a group of photographers who provide, free of charge, for a photographer to come to your room at the time of need and provide images of your sweet baby, again free of charge, so that you have memories of your little one. There is a website and/or you should be able to go through the hospital where you will give birth.

Again, I'm so sorry for your situation. May God wrap you in his loving arms and support you through this journey.

Chris

L.,

You and your family are in my prayers. I had never heard of Potters Syndrome but I have had a stillborn child. There is nothing anyone could have told me or done to prepare me for this loss. When I knew the baby had passed I was in shock. I will tell you that I never blamed God. I accepted the fact that He had His reasons and maybe one day I would know them.

In addition thank you for opening my eyes to the things that are really important. I have grumbled all the way to work instead of being grateful for having a job and everything else I have. Its not about me. May God bless you and your loved and give you the wisdom and courage that you will need in these tough times.

L., I cried when I read your post. I'm so sorry for what you and your family have to go through. I lost my daughter to SIDS when she was 7 weeks old, and it broke my heart. I would recommend taking photographs, even if you can't bear to look at them (we did this, and although it happened 11 years ago, I have only recently been able to look at them, my husband still can't), another thing would be to get a lock of hair, if possible. It has meant so much to us to have a little bit of her still around. I wish I could help in some practical way, but please know that you and your family are in my thoughts and prayers.

S.
xx

I would recommend you contact Rebekah Mitchell from MEND she can send out a request for a families who have experienced the same loss to contact you. I am sorry about your diagnosis. I know this is hard but enjoy the remainder for your pregnancy and cherish this while your baby is still alive. My daughter was stillborn at 38 1/2 weeks. She literally died right before birth and the cause is not completely known. MEND is a wonderful support group.

Praying for you and all of your family.

Hi L.,

I'm sorry to hear of your baby's syndrome. If in fact what they say is true about the day the baby is born then I know a gal from my church that can create the short time in precious memories. She is a photographer and her ministry is to create an album for babies families with short life span...I pray God will carry you and your family thru this time and better yet for a miracle...

C.

I have never been through this but I did have 2 miscarriages. The unknown (what they looked like, their sex, etc.) was very difficult for me. Enjoy every second with your child. Take lots of pictures and I think the hand and feet casting would be amazing treasures. I will pray for you and your family. I believe God is a God of miracles. Cling to that! And cling to your two other babies. They will give you strength and focus. God's blessings to you.

Also where do you live? Are you involved in a church? Church families can help you get through this. If you are not I would love for you to visit c life in Forney. OUr pastors are amazing men of GOd and the preaching is incredible. Let me know if you would like to visit. Being a sahm can be a lonely world and that can make it even more difficult to get through something like. Be sure and connect with your friends and family even when you don't feel like it. YOu might even want to see a counselor once or twice a month during this time.

I am praying for you and your family-may God hold you all tight. Thank you for sharing.

Hi L..
I read many of the other posts and I, like them, do not know very much about Potters Syndrome. I am very sorry to hear that you're going through this. It is a very difficult road; one that is impossible to prepare for (emotionally anyway).
I lost a son 6 years ago. It was the most devastating thing I've ever been through. But I saw on here that several people referred you to MEND, and I was happy to see that. I am actually on the Board of Directors for MEND and just wanted to reach out to you. Someone from MEND reached out to me when I was carrying my son, who we knew would not live, but I continued the pregnancy. You can read more about him on my family website if you want. It is:
www.thefishbowl.name and then go to Logan's page. There are pictures of him and also some slide shows that I've created from our annual "Walk to Remember" that we (MEND) do each year in order to remember the babies we've lost.
I would be happy to help you in any way possible. It's such a lonely road at the time (or that is how I remember feeling) and then when you go to a MEND meeting, you are able to meet other moms and family members who have gone through that similar pain of losing a baby.
Everyone goes through life fully expecting to bury their parents, maybe even a spouse or a sibling....but no one ever expects that they will have to bury a child. It is a heart-breaking experience.
Let me know if you need anything, or just someone to talk to about what to expect and so forth. I'm happy to help if I can.
~B.
____@____.com is my e-mail.

I'm so very sorry for this diagnosis.

I just wanted you to know that I can't imagine what you must be going through. I am a nurse with most of my experience in women and babies. It never fails to break my heart when a mommy loses her baby. Know this - there is power in prayer. The bible tells us that if we will pray believing that God will answer. I believe that God is able to heal your baby. I believe that God can work a miracle. Whatever His will for your life and the life of your baby, there is a purpose for this trial. I will pray for you and for your baby.

I'm so sorry. I have a friend who lost a baby under similar circumstances but a different diagnosis (Trisomy 13). She has a very strong Christian faith and found a lot of comfort from that and from other people who had gone through similar struggles. If you'd like to get in touch with her, let me know. ____@____.com

My heart is aching for you!!! I don't know anything about Potters Syndrome but I just felt like I needed to send you a quick note to let you know I am praying for you and your baby!

I also wanted to let you know about a blog I read, writen by a mother who found out when she was 20 weeks pregnant that her baby would not survive long after birth. Here's the link: http://audreycaroline.blogspot.com/2008/01/beginning-of-s...
Please go out and read this mother's words of encouragment and send her an email. I think she would be a good resource for you.

My heart breaks for you and I am praying God will work a miracle and that your baby will be born perfect with no illness after all! God bless you!

Dear L.,

I am so sorry for you and your family. I don't have any experience with Potters Syndrome. I have only had 2 miscarriages, and that was hard enough. All I can say is that I would enjoy every single minute of your pregnancy, and love your baby.
I remember from watching Extreme Makeover Home Edition, a lady (photographer) that lives in Keller that started a free service to parents in your situation. Her nonprofit is "Tiny Works of Heart". I have copied a link from EM HE and her personal photography link. I know that I would love to have any memories that I could hold in my hand.
http://abc.go.com/primetime/xtremehome/index?pn=bios#t=Se...
http://amberaugustin.com/index2.php

I recommend getting in touch with Rebekah Mitchell at Mend.org. I lost twins shortly after birth and going to a MEND support group was probably the best thing I did. They have a support group in the DFW area that meets once a month. Rebekah might also be able to help you find other mom's that have dealt with Potter's Syndrome. My prayers are with you. The road ahead is one that no one wants to travel.

There was a wonderful article in the NY Times a couple years ago about perinatal hospice. You might look to see if there is such a program in our area; or the article may give you some ideas that you may want to consider. I would strongly suggest writing a birth plan dealing specifically with what you want to happen after the baby is born:

http://tinyurl.com/d5tewz

Hi L.,

No advice on Potters syndrome but I have experienced the death of a child so I wanted to reach out to you and let you know that you're in my prayers. Hold fast to God through this experience. Ask for His comfort and he will provide. Sending you a big {{HUG}}...

God bless you,

M.