Hello from Texas

[samanthasaunt]

To introduce myself:

My name is Amy and I have a wonderful younger sister going through the loss of her child who will be born in a few weeks with Potter's Syndrome. I have been looking for a way to find the right words or at least an idea of what she may be going through and am so glad to have found you all. She is planning to contact you for photography services and told me about your organization. Thank you for providing this wonderful service to families.

How can I help her and her husband? We pray for them, but I just wish I had words or could do something tangible. I live too far away to just drop by and words seem so empty sometimes. When I visited a couple of weeks ago, it was like a big barrier in the room. My brother-in-law doesn't want to talk about their daughter and my sister is getting lost in the details of preparation for the birth and funeral. Because of that no one in my family is talking to them about their baby. I hate that because with their first child, we talked all the time about the baby. Is it okay to talk to her like I would any other expectant mom?

I know I could write a thousand things, but I'll stop for now. Thanks again for reading and I look forward to any suggestions.

Thanks,
Amy

[Marc Turner]

Hi Amy, I'm sorry to hear about your sister. I'm a NILMDTS photographer here in Austin - so near you but it sounds like probably not near your sister. I would think the best thing you could do is just to contact her frequently, and be sure she knows that you're a ready ear if she wants to talk about it. I know that us guys aren't always great support in this kind of situation as we like to be able to fix things and some things can't be fixed - leaving us feeling upset and possibly a little angry at our helplessness and thinking that somehow there ought to be something we could do or should have done. Having a caring sister that keeps in touch is probably the best thing she could have!

[Jayme]

Amy,
When we found out that our son would not live long if he made it to birth (he was stillborn) that last thing I wanted was people to act as if he no longer existed. I was still pregnant and my son was still alive and still very much my son. I truly treasured the people who still treated me as a pregnant woman and asked about my baby. I loved sharing his movements with those who asked to touch and talking about the many things that come with pregnancy. But that didn't mean that it was always easy to talk about him because it was painful and scary knowing that the end would come and at some point I could no longer be pregnant with him and would have to say goodbye. That fear and pain didn't change the fact that I still wanted to enjoy and experience every pregnant moment that I had with him. Especially as a first time mom, it was sooo important to me that my child was still a child, that my husband and I were still parents. Those people who not only supported us through Justin's death but supported us and celebrated with us through his life were invaluable. I realize your sister is not necessarily the same person as me, but she is a mom and my guess is she wouldn't mind if you continued to treat her as such and talk about Samantha. She is very blessed to have an older sister like you that cares enough to ask. You will certainly continue to be a blessing for her in the upcoming weeks and months. I am so sorry that your family has to go through this. I pray that you will become closer and stronger and that Samantha's life will touch you and others in ways you never dreamed were possible.

Blessings,

Jayme

[owens_mom]

I imagine there will be a windfall of responses to your question. When I read your post, it makes me think of all the things 'i wish i would have done.' or .. had someone do for me. From what I understand of Potter's Syndrome, the baby can live a day or two ourside of the womb.

If I had known my son would die, I would have gotten a professional photograph of my huge pregnant belly. I felt so beautiful when I was pregnant, and I thought about it, I even picked out one of my favorite photographers (lauribaker). But I put it off and put it off and then it was too late.

If she is Christian (i do not know what other religions do).. help her plan a baptism. It will be in the hospital, but it will be more like a celebration than the funeral will be. There are lots of beautiful details that can bring joy. Like picking out the baptismal gown, picking out the god parents...ect.

Take lots of pictures, before, during, after. Those will be the only ones she will ever have, and even though they will be painful to some people to look at, she will eventually cherish them.

The most powerful pictures I have ever seen are the ones under the post "Portraits of Grief". They are so beautiful and raw. I get tears in my eyes just thinking about them. I wish I would have had one taken.

I know this sounds silly, but help her pack her baby bag with things she wants. My mom picked out my sons one and only outfit, and it was so ugly. God love my mom, but of all the outfits I had at home for him, she picked up the ugliest one.

I am sure the other NILMDTS Mothers have better suggestions than that. But those are the only ones I can think of off the top of my head.. at 1:30 am..

-Stephanie

[samanthasaunt]

Thanks to everyone for their wonderful advice and thoughts. I will check in often and pray for everyone. I had bought an outfit for Samantha even though we knew that she may never wear it. I think I'll start talking to my sister more about Samantha and remember how much she wants to celebrate her daughter's precious life.

Amy

[motherofthree]

From what I understand of Potter's Syndrome, the baby can live a day or two ourside of the womb.

Unfortunately, with classic Potters Syndrome (renal agenesis - both kidneys are missing), there is a 40% chance of still birth. Often if the baby is alive during birth, they don't take a breath. Life span can be up to four hours I've heard as a maximum, but that is very rare - it can usually be a matter of minutes. The baby can be kept alive for a bit longer than usual if put on breathing machines and life support. The only cases I have ever read about or come across when the baby lived longer is if they were a twin sharing a placenta and amniotic fluid - which allowed the lungs to develop despite the lack of amniotic fluid. My daughter lived for two hours without any support or intubation or anything, and I consider that a miracle and a gift.

Amy, I'm sure (I hope) that your sister has been informed of the range of possibilities by your doctor and is preparing for them. There is some pretty good information available on the web - I googled renal agenesis and Potter's soon after we received the diagnosis, and while the info was often too sad to bear, knowing everything made me more certain of my decisions.


I'll start talking to my sister more about Samantha and remember how much she wants to celebrate her daughter's precious life.

I wish I would have seen your post earlier. I agree that talking about your baby with your sister is a good idea - I would have loved nothing more than for people to ponder the color of her hair, how much of it she would have, if she would look more like me or her dad, if she would favor her older sister, her coloring, etc. instead of only how long she might live or what we planned to do after she died. While I appreciated my sister's input and suggestions on these things as well, it was such a blessing that she would sometimes just let me act like an expecting mom, instead of a pregnant lady with a baby that would die.

I think your sister is lucky, lucky, lucky to have you. Your care and love for her and for Samantha shows in your thoughts and deeds. You care so much for them, and it touches me so much - especially since I found myself in this situation last October (I delivered December 26th last year).

Another thing you could make sure and do once your sister get the pictures back from NILMDTS - talk about the baby like you would any other. Admire her chubby cheeks, her long fingers, her chubby feet, her sweet lips, her hair (or lack of), just like with any other baby. Would that people have looked at the pictures of my angel and delighted in her baby-ness rather that just saying she's beautiful then looking sad and forlorn.

AND onle last thing then I promise to shutup. One very special thing I did when I was pregnant, was I took in a voice recorder to all of my doctor visits (my Dr. was seeing me once a week to keep a close eye on the baby's heartbeat and to make sure it had not passed in utero because that is so common with Potter's). He would do a doppler every weeks, and I have minutes of her heartbeat on tape and digitally. I LOVE listening to these proofs of her life. We also took the recorder into the OR with us (c-section) and were prepared to record her in case she made any noises. Our Doc warned us that she probably would not due to her inability to breath. But we were able to record the sound of her heartbeat on the monitoring equipment beforehand, AND we were lucky that she made tons of little sweet noises, and even a couple of cries. Perhaps this is a gift you could get your sis now if she hasn't thought of this. I treasure every little noise she ever made, as well as every heartbeat I have on tape. Sometimes I sit and listen and smile or cry. Or both. I'm praying for you and your sister, and your sweet niece. I hope I get to meet her someday through her pictures.

[Marcus Momma]

I am so sorry to hear about your sister. I will keep her in my prayers as well as your family.

[Jennifer Turner]

Hi Amy, I am the NILMDTS Coordinator here in Austin but as Marc said it sounds like your sister isnt in our area. Has she found someone from NILMDTS yet? I think planning can be a gift in itself, I have had several sessions where we had planned a few months ahead about the birth and session itself, it gives a little touch of "normalcy" in an abnormal situation to be able to plan their "first portraits" and it insures that we are there and set and ready to capture any moment that they are given. Please let me know if I can do anything and thank you for taking such good care of your sister and niece! God Bless....