I carried to term

[motherofthree]

My daughter was diagnosed with renal agenesis, or Potter's Syndrome when I was 25 1/2 weeks gestation. This condition is incompatible with life. We carried the baby to term, one of the most difficult things we have done, but also rewarding. We delivered our daughter on December 26th, 2007. I struggled with whether or not we were torturing the baby because of the lack of amniotic fluid, if I was being selfish, as well as how difficult it would be for us to carry for nearly three more months knowing we would lose our baby. While the first few weeks after her diagnosis were extremely difficult, I began to look forward to her movements, the increased monitoring of my pregnancy (we heard her heartbeat every week and recorded it), and the additional chance to bond with the life inside of me. Although the doctors doubted my girl would survive to term, she did, and continued to amaze us by living for exactly two hours. I am so glad we did this, as I value every second of my little miracle's life now - both in and out of the womb. I know it is a very personal and difficult decision, however. We actually considered all of our options carefully and painfully before we decided. If anyone would like to talk about a similar diagnosis or decision, you can respond to the thread and I would be glad to discuss things, or just commiserate or something.

[Tasha Nicholls]

Beth, I cannot even begin to imagine what you have gone through. I am so sorry for the loss of your beautiful Kavya and the grief that you are going through, now. My thoughts and prayers are with you.

**HUGS**

[Marcus Momma]

I am so sorry for your loss. I dont know how I could have done it knowing something was wrong with my baby. You are a strong woman like so many others on here.Take care.

[Rita D. Conners]

Dear Motheroftwo, your decision to carry your baby full term, knowing that it would not live long, was the most unselfish thing a human being could do. It would have been so much easier to end your pain, but instead, you stood by your unborn child and let nature take its course. I am sure that she/he will be one of the five people you meet in heaven some day.
My thoughts and prayers are with you and your husband.
Sincerely,
Rita

[carissa13]

Most importantly it was not selfish of you to continue your pregnancy, it did not hurt your daughter to have no amniotic fluid, that space is all she ever knew so trust me, I know from personal experience it's true! At my 20 week ultrasound I was told that Jarell had no amniotic fluid and his kidneys stopped working.

When we were told our son would not life much past birth, if he even made it that far was horrible. We were given the option of terming our pregnancy but we just could not do it. I agree it is a very personal decision and everyones reasons are different. God put it on our heart to continue the pregnancy, we could not be the one to end his heartbeat!

A nurse was talking to me during one of my numerous stress tests and was telling me how much she admired my strength for carrying my baby. I told her that this is the only time I will have with Jarell on earth so I don't think I'm strong for doing it, I just think I'm a loving mother. She did not really understand what I was trying to say to her but she was wonderful to me, she always tried to be the one to take care of me each time I had an appointment.

I cried a lot in those 17 weeks I continued to carry Jarell but I also had a lot of joy. I was the only one that could give him a perfect place to live in his time on earth. I knew once he left me his time here would be short. I can still remember him kicking me, and moving around like you would not believe every time I ate. Jarell loved potatoe pancakes!!!

We did not share our story with very many people because neither one of us wanted everyone feeling sorry for us. We wanted to be able to enjoy what we had with our son. Rick still talked to my belly all the time. And our strong boy never gave up. Against the odds that the doctors gave him, he did make it through 17 more weeks, 14 hours of labor and he opened his eyes and looked at us and gave us a few little whimpers.

I have never told anyone but I knew something was wrong before I ever went to my 20 week us. I could feel Jarell moving but it did not feel the same. I could not tell anyone because that would mean I would have to admit it to myself.

I felt that continuing my pregnancy was the best thing for all of us involved. Rick and I were blessed to see our son alive and someday we will have eternity with him. We were sad to see him go but we were so happy that we did not end the pregnancy. I still have people tell me that they admire me for what I did but I don't feel like I did anything to be admired for, I was just cherishing my time with my son.

[motherofthree]

Thank you all for your kindness, and thank you Carissa for sharing your story with me. I think we often don't realize how many people share our stories in some way. When I first found so early that we would lose our Kavya, I thought it was the worst sort of purgatory, being in some kind of holding pattern, not knowing if she would actually survive until term or if I would lose her while she was still inside me. Now I know it was a unique gift.

I feel the same way as you do, Carissa - people talk about my strength and how much they admire me, but I feel like I was given a gift. I thought at first that it would have been easier not to know, but now I think it was best. I was able to plan in advance and were able to save so many memories.

While I was carrying, the complete lack of fluid prevented the doctors from determining the sex of the baby, so we bought outfits in premie and newborn size in boys' and girls' fashions so we would be prepared for any circumstance (I donated the ones we didn't use to the grief center at the hospital). We called NILMDTS and got our wonderful photos, my mom, grandmother, sister, daughter, and neices were able to meet Kavya. We also bought handprint kits so we got plaster molds of her hand and footprints. Now every time I get a 40% off coupon from the craft store, I go buy another kit to give to the grief center for parents that don't have time to prepare!

I just think that while at times it seemed like torture - I cried, I ranted, sometimes I would even forget that we were going to lose our baby - mostly I was able to cherish her every movement. I even kept a journal and wrote each day about my pregnancy.

Anyway, knowing that more people have gone through, or are going through a similar situation helps me to feel like we're not so alone in the world! I thought I would start a dialogue in here in case anyone wandered in and wanted to remember with me or to ask question if they're going through a similar pregnancy.

Also, Carissa, you mentioned that you noticed a difference in Jarell's movements. What difference did you notice? I also noticed a difference - I felt like I felt more movements, but they were much more slight than with my daughter. I didn't get many whopping kicks, but lots of flutters throughout the pregnancy.

[carissa13]

It is kind of hard to describe but at 20 weeks you should feel your baby moving pretty well and he moved a lot but it was so, I guess dainty. When I was pregnant with my daughter by 20 I could see her moving and with Jarell I did not feel movement like that. Only until he got bigger could he really kick me hard. He was breech so it was always the bladder. And he tried turning a few times toward the end and I thought I was going to die from the pain. When there is no amniotic fluid you feel their every move. I remember he used to get the hiccups a lot.

I used to go the scrapbook store when I was pregnant and literally cry in the store because they don't make things for death, only for life. I would see other pregnant women and wondering if they were walking around in heartache like I was. The world didn't know I was going to lose my baby so I'm sure there were many others walking in those same shoes. I will never look at a pregnant women the same again.

The only reason I knew Jarell was a boy is because I asked them to do an amnio-infusion. That is where they put fluid into your uterus. It's the opposite of an amniocentisis. I knew it would not make a difference in the doctors eyes but it would make a difference in mine. I wanted a better ultrasound and I wanted to know if I was having a boy or a girl. It mattered to me to be able to call my baby by their name. A lot of doctors will not do a amnio infusion because you could loss your baby. I thought the pros out weighed the cons. At one point Jarells heartrate went way down and we thought for a moment we were going to lose him but he was a fighter. Was it worth it, yes it was. Jarell had new found space and he was doing a dance in there, he was so excited to finally beable to move around. The fluid would only last up to one week but if it was one day or one week it was worth it.

[Erica Stone]

Thank you both so much for talking about your stories. I am so glad for each of you that you are grateful to have gone to term with your pregnancies. It is a crazy and horrible reality when you are faced with such devistating news. It is never an easy or lightharted decision to make when it concerns your child. My husband and I were faced with such a decision, and for us we chose differently.

Matthew's problems presented themselves much later in my pregnancy. They came fast and hard and at the end were too many for his tiny body to handle. I was about 26 weeks and his chances of surviving even another week were incredibly slim. My specailist presented us with the likely scenarios and we just cried and cried. I was in somebody else's nightmare and was dumbstruck as to how this could have happened to us. Then we had to tell our families the bad news - it was horrible. We could barely even get the words out. What we had decided was to end the pregnancy. With the information that we were presented with, it was the right decision for us. Within two days we could see a significant increase in swelling to his head, face and body. There was no way that Matthew wasn't in pain, and I could not bear it on my conscience that he was suffering. My husband was so wrecked that he could hardly talk. Why should a tiny baby have to hurt so much? We decided that it wasn't fair to him no matter how we felt.

By the time they started to induce me his movements had pretty much stopped. I remember telling my husband that he wasn't really moving anymore on the way to the hospital. I cried through the long inducement and quick delivery. I cried afterwards when the doctor told my husband that he had not been alive when he was born. (So we didn't really have any decision to make after all...) I cried when I saw him the first time and saw for myself how badly his skin was strained and bruised from all the swelling. I cry for him all the time, almost three years later. If he had been born alive, we would have loved him as we love him now.

I have said it in other posts, but I will reiterate it now. It was all in the timing. The next day (Mother's Day) there was an article in the paper about NILMDTS.

[carissa13]

Thanks for sharing Erica, your story brought tears to me! I hope no one feels they are being judged at all by us telling our story to continue our pregnancy. Like I said it's very personal and everyones reasons are different. I can totally understand why you made the choice you made. If I thought for a second Jarell was suffering I would have ended my pregnancy.

I still remember that day........... sitting in that tiny room waiting for someone to come in and tell us what it all means. The first thing out of their mouth was "you can end your pregnancy, we can induce you as soon as you want." At that moment I thought I wanted to, I asked all the questions and I think I was trying to mentally prepare myself for ending my pregnancy. That was all in the matter of 1 hour so obviously I needed to go home and soak in this new reality I was just handed.

We all are here because we have been given an special angel. It does not matter how we got here, our hearts all hurt the same.

[motherofthree]

Erica,
Thank you so much for presenting the other side of the coin, so to speak. I know that my husband and I agonized over our decision, and I still wonder whether it was selfish or not. I know that any decision taken under such circumstances is heartbreaking and agonizing for everyone who gets an adverse diagnosis so early in pregnancy. Different circumstances led us to different decisions, but as Carissa said, the outcome was the same. We lost our special, beautiful babies. The decisions we made are neither right nor wrong, but decisions made completely out of love for each of our babies and a desire to do what was best for them. I hope we didn't give any other impression. I am so sorry for your loss.


Carissa,

I had no idea that they would do an amniotic infusion. I didn't even know this existed. Maybe my doctor (as wonderful as he is (didn't know about the option, or didn't present it for the reasons you outilined. I remember about two weeks before I was to deliver I had a dream wherein I opened up my tummy and took my baby out and held her and talked to her. She had been head-down the entire pregnancy, and I always worried about whether or not her head was uncomfortable, perhaps pressing on my pelvic bones or something. SO in my dream, I took her out, held her, rocked her, sang to her, then put her back in my tummy feet-first. Then before I closed my tummy (which for some reason opened and closed like a hinged flap - ha) I went to my kitchen sink and filled myself up with warm water so she would be more comfortable! At the very next ultrasound, we discovered she had shifted and was now in breech presentation! My doctor was baffled at how she hat accomplished this so late in pregnancy and without the elbow-room, but I know exactly when it happened because that night I had thought she was going to pop right up out of my belly. It took so much effort. I didn't know that she was turning at the time...I actually feared that she was struggling for her life (one of my biggest fears throughout the pregnancy). Anyway, it was a nice dream. Your decision to to an infusion sounds like one I would have made, even if it only lasted for a week, it would have been one more small gift I could have given. Also I would have known she was a girl, and thought that it would let me bond more at the time.

My doctor assured me that she wasn't uncomfortable, but I worried that he was just telling me what I wanted to hear. I finally decided that since I trusted him I would take his word. If I thought she was in pain I may have made a different decision. But I think that she must not have been - she looked so perfect and peaceful when she was born.

[carissa13]

Beth ~ I don't think ANY doctor would offer the amnio infusion, there is no medical benefit to the baby to do the procedure. One doctor pretty much ignored my inquiring about it. I am not known to keep my mouth shut if I feel a doctor is not listening to what I want. My wonderful GYN doc that could not take care of me once my pregnancy became high risk referred me to the perfect doctor for me. She said she would do it one time, just for me. I don't think she had even done one before. I was laying on the table telling them what to do. See, I've working in the medical field for 12 years so I know a few things. It was so funny because they know how to put the needle in but were a little lost after that so I pretty much had to tell them the easy way to do it. They were laughing at me, how I could laugh at that time I don't know but we all did. We were all excited (I'm sure people outside the room could hear us) when Jarell started happily drinking the saline they were putting it...... it was like our own mini celebration. Just holding on to each great moment. We found out he was a boy and that he had his daddys squished nose.

Rick asked our doctor if Jarell was in pain because of having no fluid and she just kind of chuckled and said this is the only thing he has ever known, he is okay. And we had a lot of stress test done and we would have picked up on him being in distress. I believe he was just fine where he was.

Thank you for helping me get back to remembering all those moments I treasured at that time! So much heartache and so many tears but so many joyous things to remember!

I miss being pregnant with my sweet boy........... time keeps ticking, never stopping for a moment.

[amburke2]

Our son was diagnosed with multicystic kidney displasia, a condition probably similar to Jarell's in that Timothy's kidneys started working but then stopped, leading to a lack of amniotic fluid. We got a referral to a specialist and heard the words, "those children don't survive" at 17 weeks. We had planned our pregnancy and loved him as our child even then, and had previously thought we would never consider terminating a pregnancy. The diagnosis made us think about that option, though, but in the end we decided that for us, if we didn't continue then all we would have would be his death, rather than whatever time we would have with him in utero. (I hope that doesn't come across as a judgment because it isn't intended to be one--both my husband and I certainly have tons more empathy than we ever could have for parents who decide to take alternative actions.) We decided to celebrate his life with "Timothy Days" each month on the anniversary of his conception by doing things we wanted to be a part of his life--camping in the backyard, carving pumpkins, decorating the Christmas tree, stuff like that. We kept hoping and praying for a miracle, even though there was no medical reason to believe we could get one. We prepared for his death, though: planning his funeral, contacting NILMDTS, buying an outfit and footprint kit, assembling photo props with the overnight bag. Our families, who live in another state, also planned to be here for his birth, and we set up a phone tree in case things happened in the middle of the night. In the end, Timothy lived to term, and was born alive December 28, 2007 (just 2 days after Kavya). He lived for 38 minutes after birth. Three of his grandparents got to be there to hold him while he was alive, and he got to be baptized and receive other sacraments, something that was important to us. If I had to make the decision again, I would make the same one. I don't mean to sound preachy, but we believed that he's our precious son regardless of how small he was or which organs weren't working. Also, because we carried him to term, he got to do some pretty cool stuff. I mean, how many people get to be above the treeline on a mountain in Alaska, or in the same room as the Dalai Lama?

He continues to be our special little boy.

[motherofthree]

Thank you for sharing your beautiful story. I love that you did these "Timothy days". It is such a beautiful idea. That is another thing that I like about having known in advance that we were going to lose Kavya was the ability to actively parent her in such ways (although I didn't think to do "Kavya Days").

It is interesting how integral the kidneys are to a baby's survival - how it affects the development in different ways. Kavya was lacking kidneys and bladder. While she could have lived for up to several days if that was all that was wrong, the absence of fluid left her lungs underdeveloped and unable to sustain her precious life. The doctors told me not to expect to carry her to term alive, not to expect her to take a breath, and not to expect her to live for more than a couple of minutes if she did. As many babies here are, she was stronger than anyone imagined - she was my own little miracle. I cherish every moment of her two-hour life with us. There were also a multitude of other problems they told me to expect that also didn't turn up. She was very nearly perfect, and very perfectly loved.

By the way one of the things she did get to do during her short life was to talk on the phone. When I called my family that was waiting at my house for news twenty minutes away, I let her "speak" into the phone so everyone could hear her just in case she passed away before they arrived. She made the sweetest little noises. (I know this isn't related to the conversation at hand, but just something I thought of and wanted to share).

[Marcus Momma]

You know what I had a dream the other day that I was pregnant and my doctor took the baby out of my stomach and I heard my mom say its a girl (don't know why unless it means something to come) and he put the baby back in my belly so she was safe until it was time to come out. And i started screaming for them to let me see her and hold her and saying i had 4 babies now and told my daughter there was her, josh, marcus ,and miley. I knew it wasn't marcus he pulled out. I was really confused when i woke up.

[amburke2]

Beth,
I'm so glad you got to hear Kavya make little noises. I was hoping to hear Timothy cry, and he never did, but we did hear his little voice for one quick second.

We still have Timothy days to some extent: each month on the anniversary of his birth, we do something to celebrate him. Last month we each did something creative--my husband made a song on the computer, and I did a couple pages in Timothy's scrapbook. It's helps me feel like we're honoring him and his memory.

[Rita D. Conners]

All of you women are incredibly strong. I couldn't imagine having to make any of the decisions each one of you have made. I had a miscarrage on my fourth child. I drove to the hospital, not knowing what has happening. I was bleeding heavy. They treated me like another number, as I dripped blood on the floor and tried to clean it up. When it was my turn, after they checked out my insurance coverage, I was taken to a room and my uterous was scrapped clean. My husband drove me home afterwards. The void was huge. It took me a long time before I could feel normal again. We both looked forward to our new baby. We had hopes and dreams for him. They were all taken away on this day. I am here to support all of you. I do not judge. I hope I haven't sent that message out.
Sincerely,

[chloe's mommy]

dear motheroftwo, like you i also had a hard decision to make a year ago. i was raped i had the choice to either keep my daughter od give her up like so many other rape victims do, well i made my decision i kept my daughter. although she did not make it. it was the best decision of my life, sort to speak. it takes very strong women to make the decision so many of us have. my prayers are with you and your husband.

[motherofthree]

Sayla,

I don't know how I could have missed your post, but somehow I managed to do so. I am so sorry for the pain you have gone through. It was so brave of you to make this decision and to still allow your daughter into your heart despite the circumstances in which she was conceived. And to further that pain by the loss of your Chloe after everything. I am so, so sorry. You are a very brave young woman. Thank you for sharing this with us.

[JenniferBrown]

I'm not sure why I missed this whole thread.
I didn't go through this situation at all but one of the people I met through NILMDTS (called me requesting services) was going through this and I had never heard of it before (I was new to NILMDTS).
All of your stories have completely helped me understand why you make the decisions (either way) you've made. I respect each of you for the choices you made, no matter what way they were.
I really like the part where Carissa said "I wasn't being strong, I was just being a Mom and enjoying the time I was able to have with my son" (ok those were my words of what she said but you know what I mean).

Shawnna, Hmmmm, a girl named Miley huh..... I guess only time will tell huh! ;)