How to Keep Swallowing That Lump In Your Throat

My post on grief relapse somehow didn't include one extremely important occurrence which I somehow forgot...the first Potter baby to survive.  I've posted about this before and since it has received media attention because her mother is a member of Congress.  It has caused hurt and controversy and of course, is a beacon of hope for those of us who have walked and are walking through the darkness of infant loss due to Potter's.  Many suggest that little Abigail can't have true Potter's, that perhaps there is something that the public doesn't know, tissue that was not reported on, etc.  Others believe it's a true miracle.  Even the congresswoman herself touts it as a miracle.  

I understand that point of view completely and if her baby had been my first Potter's baby I would probably say very similar things.  But my reality is my own headstone with two little coffins buried in between my husband and my final resting places.  So, I respectfully disagree that her daughter is a miracle.  Her daughter is the product of medical patients who were able to access medical professionals who were willing to do something that went against the grain.  Doctors who were willing to try something that appeared to be effective instead of standing behind the already delivered death sentence.  Maybe that behavior is miraculous but I don't believe it should be.  For any medical condition.  Period.  We should all have access to the best health care and to the doctors and other medical professionals who will listen to their patients, treat their patient's conditions and be willing to work with patients to achieve the best possible result in every situation.  

I digress.  This has bothered me on a very subconscious level EVERY SINGLE DAY since I first found out about it.  I don't and I can't dwell on it because there is nothing I can do to bring Wyatt and Eli back.  What I can do is spread the word and through my words encourage others to find answers and treatment.  But this all just really kills me in so many ways.  Of course I'm relapsing.  I've lost 2 sons to this condition and the most recent only 2 years ago.  Of course.

What I Would Do With What I Know Now

Recently, I posted of the first believed survivor of Potter's Syndrome bilateral renal agenesis and now that I've had some time to digest the news I'd like to share my lay person's opinion on what I would do from her on if I ever heard the words "Potter's Syndrome" in my family again.  I emphasize I am a lay person, not a medical professional.  I'm just a mom who has carried two babies with Potter's Syndrome through to their full term births and then cradled them in my arms until their time on earth ended.

Based on precious Abigail's story here is what I would do.  I would ask for a second opinion (which I did do both times), but for the second level ultrasound I would request that my uterus by injected with saline so that the baby's anatomy could be better visualized.  Then, I would ask that a repeat ultrasound be performed one week later without saline.  At the repeat ultrasound I would ask to have my fluid levels compared with what they were the week prior after saline injection.  If it showed that some saline was retained in my uterus I would ask my doctor to perform another saline injection and repeat ultrasound to see if the saline continues to be retained and to carefully monitor my baby's growth and lung development during these weeks.  If there was progress I would request weekly saline injections as well as steriods to speed up baby's lung development as I believe the risk of premature birth would be even more increased by the saline injections.

I would print out any information I could find from John Hopkins doctors regarding Abigail's case (an official statement was released) and encourage my doctor to read it and give me a chance.  The prognosis for Potter's has traditionally been 100% fatal and now that there is a glimmer of hope I would ask the doctor to give my baby a chance for life.  I would be realistic and admit that I know it is a slim chance and I would still prepare for the absolute worst outcome and would make sure I was fully informed about all of the risks involved in the saline treatments (of which there are many, I'm sure) and I would also become fully informed as to what would happen should my baby be born alive and with functioning lungs.  I would make sure there was a medical plan in place to handle all possible anticipated outcomes.

We don't know if Abigail's survival thus far is a miracle or is something that can become a reality for many but I think that it's definitely worth our persistence with medical professionals.

Change is Painful

Today I read the beginning of an unfinished story which reminded me that change is painful but worthwhile.  Congresswoman Jaime Herrera Beutler delivered a baby girl, Abigail, a few weeks ago.  Her daughter is a very special little girl.  A very special little girl born with Potter's Syndrome who is still alive.  Herrera Beutler received amnioinfusion treatments weekly for five weeks and Abigail has been receiving specialized dialysis treatments.  She was born at 28 weeks but doctors say she has fully developed and functioning lungs most likely due to the amnioinfusion treatments.  Her story remains unfinished but it brings hope and pain to those of us who have been touched by Potter's.

My initial reaction was a gut wringing ache as I thought of my own sons and my questions while pregnant.  Then I thought of all of the doctors who have told us this was not possible and the hours upon hours of research I did on my own.  I appreciate that Herrera Beutler frankly admits that many doctors told her survival of her baby was not possible.  But the pain comes in that she had medical treatment and connections available to her, likely in part because of her political position (but this is strictly assumptive), that were not available to me.  I sought that same treatment for Eli but because the medical professionals I saw had no proof of it working they were either unwilling or uninterested in finding someone who would try.  Without that help, as I am sure any other "regular" person can relate, it is extremely difficult if not impossible to find that extra level of medical care and treatment.  So this story is a double edged sword to me.  It is amazingly hopeful to hear of Abigail's survival and I pray she is the first of many Potter's babies.  But at the same time it is woefully sad to realize that perhaps had more medical professionals been willing to explore this avenue of treatment that Abigail would only be one of many to have survived Potter's to this point.

This is all speculative I realize.  I don't know how Abigail's story will end and I don't know how her story will impact others.  What I do know is that change is painful but necessary.   Without bravery, hope, persistence and enormous amounts of fortitude in the face of failure, change cannot be realized.  Herrera Beutler's family, Abigail included, have already accomplished more change than they may ever realize.  I pray that this change extends far beyond medical journal articles to the lower tiers of medicine where it is desperately needed - to Potter's families.

I am missing my sons more than ever today.

Was Going to Update...But

I routinely do a Google and a Google Scholar search for Potter's Syndrome, bilateral renal agenesis and Potter's sequence to see if there is anything remotely close to a reason as to why my sons died.  In a passing moment I thought it might be nice to update my webpage to make it more of a medical resource gateway for other families facing the Potter's Syndrome diagnosis.  To help them find the same medical information that I sought during each of my pregnancies.

So I hit the internet again yesterday and the internet hit me back - hard.  The links that I have at the bottom of my blog are (so far as I can tell) still some of the best resources available.  Because there are no answers, there is no treatment.  There is only a diagnosis, a second opinion, a decision as to how to proceed with the pregnancy and then there is time which is followed by precious moments which is then followed by a lifetime of clinging to those moments.

I would love to provide that medical information and I promise that when I do someday find something new, I will share it.  I will shout it from the rooftops.  I will never stop searching.  Until then, I realized that the best thing I can do is to talk.  To tell my story just as many others have told theirs.  When I was pregnant with Wyatt over ten years ago stories of Potter's babies on the internet were few and far between.  I felt so alone.   Things couldn't have been much more different when I was pregnant with Eli.  I found many blogs written by people who have been touched by Potter's Syndrome.  I found online support and chat groups that were only about Potter's Syndrome.  After having Wyatt I was lucky enough to have found an online support group which was really comprehensive in the people affected by infant loss that it served.  It was my lifeline for a long time after Wyatt's birth.  It was a safe place full of other people who had experienced so many different kinds of losses and were able to share those experiences and appreciate their differences and similarities.  But I missed having that intimate knowledge that comes with carrying a Potter's baby to term and then saying goodbye.  It was harder to find that connection in a sea of grief.

So here is my story.  It is as much for me as it is for you.  It is a story of hope, love, loss, grief and living.  It is not an answer or a guide, it is really just my way of making sense of the senseless.

Never Again

I am drawn to loss, specifically Potter's Syndrome because that loss I understand all too well.  I follow communities of Potter's Syndrome parents and hope that my words provide some help to those pregnant with and preparing to deliver their precious babies as well as those grieving their little ones.  I am also drawn to multiple losses.  You see, once you've lost a baby it seems that you feel a kinship with those who have also lost a baby.  But even more of a kinship with those who have lost a baby in the same way that you have lost yours.  The death of a baby is isolating when surrounded by a sea of healthy round bellies and beautiful breathing infants.  It's something to find a place of understanding and belonging.  Well, when I lost my second child that group, though comforting, wasn't enough anymore.  I needed to find others like myself.  Others who had lost more than one baby.  Sad though it was, I found a few other families who had not just lost more than one baby, but like myself had lost more than one to Potter's Syndrome.  I needed to find those people and needed to hear their stories of the future.  Because I knew I wasn't done.  I knew there would be more children in my future and it was so very important to hear of ones that had survived.

Now I've walked that path and begun a different one.  One that no longer involves monthly charting, pregnancy tests, heartbeat checks or ultrasounds.  I will never again be laying on an operating table waiting to see if my newborn cries.  For the most part I have moved beyond the bittersweet of that moment, propelled in part by the blissfully angry cries of our newest daughter as she took her first breaths - yes, breaths - just four and a half months ago.  My body changed that day but so did my mind and my heart.  I am no longer a vehicle for life.  I will never again give that gift.  Now my job is simply (hah, simply) to nurture life.  For that I am thankful.  It breaks my heart to read new stories of Potter's pregnancies and to know the gamut of emotions that those families are experiencing.  That will not be me anymore, not my pregnancy and not my children.  Selfishly I am relieved.  Watching one of my babies die was enough, two was almost too much.

Russian Roulette

I have been transparently focused on a rainbow baby since Eli's birth even though conceiving again was like firing a loaded gun. We had no idea whether we would become parents to yet another Potter's Syndrome baby or whether we would be able to bring this one home. We did everything within our grasp to find answers and the best we could do was an eight percent chance of recurrence. It was unnerving to say the least. It was so much easier to jump into the pool again when I had been told that the first time was just a fluke. I compare our experience trying again this time to Russian Roulette though admittedly our odds of getting that bullet were a little lower. According to Wikipedia, the first shot fired out of a six shot revolver loaded for a game of Russian Roulette is 16.6% likely to be the bullet. But, if that gun is shot again without spinning the cylinder, the percentage of firing that bullet gets higher and higher. The second firing is 20% likely to be the bullet, the third is 25% and so on. Though my odds are lower, my percentage increase is about the same. After Wyatt was born we were given a 3-5% chance of recurrence, now we're at 8% and truly that is just an educated guess since the genetic (or not) pathway of inheritance or occurrence is unknown for our family and I have a maternal aunt who also passed away from Potter's.

The first four months of this pregnancy not knowing whether this baby was healthy were very trying. I compared every little symptom or lack thereof to Eli's pregnancy, searching for something, anything to either put my mind at ease or confirm my fears. We chose not to tell anyone for the entire first trimester and then only began sharing when my stomach was no longer easily concealed. We didn't even tell our daughters during the first trimester. If this weren't my sixth on the way to full term pregnancy I probably would have held out much longer. I didn't want to tell anyone about the baby until I knew one way or another. It just didn't feel right to share what should be good news and then have that worry-filled question hanging over all of our heads. I wanted to either be able to share entirely happy news or to be able to quietly process bad news and then parcel it out at a time of my own choosing, not on the day everyone knew I was having an ultrasound and would be waiting for results. We had fired the gun and had to wait an excruciatingly long time to find out whether there was a bullet in that chamber. Until we saw this baby with our own eyes there were no good answers to our daughters' questions about whether this baby would die too. Stressful is a highly understated description of those months.

I am beyond happy to be in the good percentage this time and to be able to give hope to other families who have lost pregnancies and babies, especially those who have lost two little ones to Potter's Syndrome. I scoured the internet while pregnant with Eli and after he was born looking for someone else who has walked my shoes and found the path to a happy ending. I wasn't able to find any stories with that happy ending (though I hope they are out there). Now mine is written for someone else someday.

I Have To Admit

Memories of Eli's Potter's diagnosis are so heavy on my mind right now one year later. I carried Wyatt to term with no second thoughts and no regrets. I just never imagined I would be asked to make that decision again. When I was, my first thought was to end the pregnancy. I knew the pain, emotional and physical, involved in carrying a child with a fatal diagnosis to term. The difference was, with Wyatt, I had hope. I hoped that the doctors were wrong, I hoped things weren't quite as dire as I had been led to believe, I hoped for a miracle. I trusted in medical science. I believed in miraculous healing.

With Eli I knew better. I knew that the process would involve daily, minute by minute concern about baby's movements and whether baby was still alive. I also knew that it could potentially mean carrying the baby to full term for almost five more months. Our three young children at home greatly factored into my ability to function as a pregnant grieving mother. But most of all, I knew that my child would be born by c-section, hopefully breathing, and that the baby would be beautifully normal looking on the outside but missing just enough on the inside. I knew how heart wrenching it was to watch my child die and could only imagine what sharing that death with my living children would be like.

So I wanted an easier way out with Eli. For just a second. In my shock, disappointment and sadness I imagined just for a moment that it was not happening to me again and I think that option gave me what I needed to find. Words cannot describe what I found but it was enough that day for me to choose life and for Eli's brief life and the overwhelming joy it brought to our family I am grateful.

Letters

My husband and I are approaching our tenth wedding anniversary and in those ten years he has kept precisely two letters from me. The first was while we were in school applying for jobs, the same jobs in some cases. The rejection letters were unrelenting at times and after a while they took a toll on what was already a very stressful time in my life. It was then that the first letter disappeared. I don't believe I even actually saw that letter. At some later date he informed me of its contents and that was that. I was a little miffed but after his explanation forgiveness was imminent.

The second letter arrived just months ago. That letter had to have been a lot heavier. It wasn't surrounded in sea of rejection. This letter stood alone. It was the letter from the geneticist who worked with Eli and our family. Since he gave that letter to me I have read it exactly one time. I gleaned from it what I knew, that our Eli was perfect in his absence of both kidneys and his bladder, and that after reviewing Eli's medical records and the family history that we provided, which included our first son's Potter's Syndrome,...we were given an eight percent chance of recurrence. Numbers tell us so much, age, weight, height, identification, intelligence and for me a bonafide risk of having another baby with a fatal genetic condition. Eight percent. I've put alot of thought into the number eight since receiving that letter. Eating eight M&Ms versus eight donuts are two completely different things. Eight out of one hundred, which is what eight percent represents, is a relatively small number. The odds of one being in the ninety-two unaffected population are stellar. But tell that to one of the eight affected. Better yet, tell that to me, who was initially given a three to five percent chance of recurrence. Me, who has two of five children affected thus far. Let's put it this way, I don't buy lottery tickets.

When life sends me bad news I am grateful for a husband that tucks it away for another day.

I Just Want to Be Normal(ish)

I want to be able to get pregnant, tested and be reassured that my baby is healthy like most other pregnant women. I am not unique because I have lost a baby. I am not unique because I have lost two babies. But I am unique in that I have lost two boys to Potter's Syndrome (the same diagnosis of bilateral renal agenesis) yet we still don't know why. We don't know if it's genetic, although the possibility seems likely. We don't know if it's a combination of genetics and environmental factors, just environmental factors or if in our case the recurrence is just a fluke like we were told after losing Wyatt. We do know that our boys had completely normal chromosomes and that their bodies were formed perfectly without kidneys.

This also makes me unique because in carrying a subsequent pregnancy I must get pregnant, hear the baby's heartbeat around ten weeks, feel the baby move sometime within the next month or so and watch my stomach grow for almost five months before I can find out whether that baby is healthy, whether he or she has kidneys. There is no blood test, no early ultrasound, no early detection method and no peace of mind for me - for five long months.

I wish I could just be more normal. That I could get pregnant and somehow be able to know sooner that my baby would be healthy. That the sound of my baby's heartbeat could be reassuring and the baby's movements could be comforting. I once had five months of this normalcy, the months before Wyatt's diagnosis. After that everything changed and each subsequent pregnancy was overshadowed by those memories, those words and those ultrasound images we viewed on a cold and snowy January 2004 afternoon. Yet, even in the stress of those three pregnancies which followed (all resulting in healthy little girls), I was able to brush those words to the side most of the time and focus on one word - fluke, fluke, fluke.

But now, well Eli changed everything - again. I've pretty much thrown the word fluke out of my vocabulary. Now the possibility of it happening again is all too real, it can't just be imagined, or ignored. I lived through it just one year ago. For me it can happen again and five months is a long time to go without knowing.

Knowing What I Knew

Knowing what I knew from carrying Wyatt to term altered my experience carrying Eli to term. Both babies had Potter's Syndrome, both bilateral renal agenesis (meaning they did not have either kidney), both turned out to be little boys though despite many ultrasounds their genders were not revealed until birth. But this is a tale of two very different pregnancies. I knew as much a year ago when we received Eli's diagnosis as I know now and despite that knowledge I wasn't able to alter the course that I took.

That is very difficult for me and it is my only regret. Knowing what I knew affected me in such a profound way that it seeped into every aspect of my daily life. I shared news of Wyatt's diagnosis with family, friends and co-workers but told few other people while I was pregnant. My husband and I continued to rent movies, go to church, go out to eat and to the movies, shopping, etc. I lived and I bonded. With Eli things were inevitably different. I had three little girls who demanded a lot of my time, energy and attention in addition to a loving husband who also needed time, energy and attention. I chose to enter the public realm as little as possible, often at times when I wouldn't be around many people and because it was winter I was always able to conceal my smaller than usual belly from prying eyes. I retreated and hid, not emerging until months after Eli passed away. Almost like I was sent away to have a baby in secret and wanted no one to know so that when I returned I could just pick things back up where I left off. Of course, that's not really how things work when your baby dies.

Eli's pregnancy was not what Wyatt's was. Physically they were different, the babies in utero carried and moved differently. I never confused them despite all the similarities. I knew that I was not bonding with Eli and I really really tried. But, again, knowing what I knew, it was just too difficult. Too devastating to become attached to a baby that I knew had no hope. A baby that I knew, if born alive, would take his last breath shortly thereafter. Eli didn't make it easy either. He wasn't a big mover so my family didn't even get to feel his movements until I think I was about seven months pregnant, there were few sweet belly kicks and few times that hands besides mine were laid on my belly to feel him, there just usually wasn't anything to feel and it often took far too long to keep one of the girls interested before they felt a kick. His personality was so much more subdued than any of our other kids, it was like he knew what would happen and did his best to make it easy on all of us for when his time came. Wyatt was the opposite. He was strong and moved strong and never let me forget what a little fighter he was. He was born with fisted hands which looked just like a little boxer. Eli was smaller, softer and quieter and he slipped through our hands much quicker. I don't know what I could have done differently but that question will always be with me. Always.

Who Knew?

Wyatt was my first pregnancy so everything was brand new. I had never experienced the kick of a baby within my belly or watched that belly grow plumper each passing day and week. I had also never been so excited to be having an experience, even one that brought me to my knees in the bathroom each morning. It was nothing short of amazing. I had also not purchased anything, not one thing, prior to our first ultrasound at 19 weeks. After Wyatt's Potter's diagnosis I understood that it was because I knew something was amiss. Somewhere in my subconscious I knew.

I knew with Eli too. Early on in his pregnancy my husband purchased a new infant car seat as our original was now outdated and we wanted this new little one to be a safe as possible. He asked my opinion and I just remember not wanting to pick one out. I felt that we should not get one yet. I also remember feeling that Eli's movements early on were different. I didn't feel him move as soon as I had with the girls and his movements did not seem as regular or as strong. To some extent this had happened with our youngest daughter and that was due to the placement of my placenta so I chalked these observations up to the same reason. I will never forget the day before Eli's ultrasound. My husband and I were walking with the girls that night and we were behind them hand in hand. I remember telling him that I was a bit concerned about the ultrasound, that I felt there was something wrong. I knew. I anticipated a problem with the placement of my placenta though. It never even occurred to me that in less than twenty-four hours I would received another Potter's diagnosis.

This got me to thinking. Has anyone else "known" that something was wrong or had a feeling that something would go wrong with their baby while pregnant? Or is it just me?

Tragedy

I was explaining Romeo and Juliet (and, incidentally the difference between it and the cartoon Gnomeo and Juliet) to my girls the other day and used the word tragedy. This required a definition. It took everything I had to avoid using this word to describe us, Wyatt and Eli. Romeo and Juliet is a tragic love story yet so is ours.

Webster's dictionary defines tragedy as "a dramatic composition, often in verse, dealing with a serious or somber theme, typically that of a great person destined through a flaw of character or conflict with some overpowering force, as fate or society, to downfall or destruction." Application of this definition to my life results in: Wyatt is the wonderful baby who is destined by his conflict with Potter's Syndrome, the overpowering force of his fate, to a sure demise. Now, in Romeo and Juliet this is where Shakespeare ended it, leaving the Capulets and Montegues to mourn their great losses and try to mend their torn families. My story however has another act. It is basically the same act just with a different baby years later. Tragedy upon tragedy. No hero or heroine, no last minute cure or magical potion, just tragedy.

Potter's Syndrome is a cruel form of fate from beginning to end. It is an almost universally fatal birth defect yet not often not fatal enough to cause miscarriage. It doesn't even become visible via ultrasound until sometime between the 4th and 5th month of pregnancy. At that point there is little to no fluid for baby and he/she will become compressed within the womb but the pregnancy can continue to term. The pregnancy continues with the disclaimer that the baby can die anytime in utero and so a constant vigil begins for the mother (and father). When baby is born he or she can die anytime during labor or shortly after. Expected lifespan is measured in terms of minutes to hours at most. There is no medical treatment for this condition in almost all cases. No hope and the only sure answer is the death of a precious child. If that isn't tragedy I don't know what is.

Alone in the Ring

I feel like I'm standing in the middle of a boxing ring, gloves on, hands raised, muscles tensed, eyes focused on the fight ahead. Yet when I look around I am all alone and almost paralyzed with fear. I have no way to block the blows raining down upon me, no coach in my corner to guide me to victory, no training to fall back on. That's pretty much how I feel right now. My opponent is Potters sequence, specifically bilateral renal agenesis. It has taken two of my sons and I want to know why. I have no training to assist me in this fight and those that I have asked for help have let me down more than absorbed the blows. I would just like one person to say "let me help you" and be able to do that. I have made a few more attempts today in the hopes of throwing a few punches of my own, hopefully they land in the right place. It is painfully obvious there are no answers right now and may never be, but I would be too remiss to not make every effort that I can. So I keep fighting alone waiting for someone to step into my corner.

Because I'm a Mother

Because I'm a mother I wipe away others' tears while holding back my own. Because I'm a mother I am the last one to sleep each night. Because I'm a mother I am able to heal wounds with a simple kiss. Because I'm a mother I take responsibility for my sons' deaths. Only after now losing Eli have I truly come to this realization. It doesn't matter how my children died, I shoulder the blame for their deaths. Because I'm their mother. Our little boys were created inside of my body. Anything that went wrong with their development went wrong inside of my body.

When we found out about Wyatt's Potter's Syndrome we naturally needed someone or something to blame. We needed a reason. I questioned everything - if only I had done this differently or hadn't done that, what I drank, what I ate, physical activity, the bottles I drank my water out of - everything. I even believe that for a brief moment my husband blamed me in his grief. Eventually we came to the realization that nothing we did caused Wyatt's Potter's Syndrome and there was nothing we could have done to prevent his death.

Yet now after Eli's death from Potter's Syndrome I find myself again, asking those questions, wondering if I'm somehow to blame. Or worse perhaps, whether my husband is. You see, having Potter's Syndrome once is explained away by the medical community as a fluke, most people are given a 3-5% chance of it happening again but told not to worry because it won't. But when it does happen again those reassuring percentages disappear and then you are told it is probably genetic. You are left with no percentages, no answers. It boils down to your DNA and your partner's DNA and the knowledge that you may be somehow at least partly responsible for your child's death.

Because I'm a mother, my children's pain is my own. Knowing that I may be the cause of that pain is a very bitter pill.

Yet Another Thing I Thought I'd Never Say

We got our son's autopsy results today. I am so very thankful I was not alone at that appointment. Eli's chromosomes were 100% normal, just like Wyatt's. Eli was missing both kidneys and his bladder but other than that was completely NORMAL. While we did not have an autopsy for Wyatt that is exactly his diagnosis via multiple ultrasounds. So, we have answers and yet we don't have the most important answers. Why did this happen to us twice? Why both of our sons? As I've always feared, I don't believe we will ever have these answers. Lucky for me, I cannot recall the last time I let fear keep me from pursuing my passion. Lucky for us, my husband is as steely as I am. We still have a few lines in the water as we have not heard from the geneticist yet and it sounds like she may have pursued additional testing which may/may not yield some answers. I won't be holding my breath.

No One to Blame

I've been thinking about others' perceptions of our situation, carrying a second child with a fatal diagnosis. How some may see this as irresponsible on our part, having subsequent children knowing of our susceptibility to Potter's Syndrome. It is something I have pondered since discovering this baby's condition because it is difficult to acknowledge this baby without acknowledging the loss of our first for the same reason.

We were told that Wyatt's Potter's Syndrome was a fluke, extremely unlikely to reoccur. We proceeded with medical caution, we had three ultrasounds while pregnant with Wyatt which documented any possible anomalies and then after his birth we had his cord blood tested for any chromosomal problems. His chromosomes came back completely normal and physically he had no other notable anomalies outside of typical Potter's Syndrome characteristics. There is no genetic test which can be administered to check and see if we are carriers of something which would be causing the bilateral renal agenesis and most cases are truly flukes. It is not even known the specific genetic etiology that causes this baby's condition, whether it is strictly genetic, environmental or a combination.

The odds of this happening to us again were estimated to be 3%. Let me break down what odds of 3% look like. Both men and women have a lifetime risk of about 5% of developing colon and rectum cancer. Women have a lifetime risk of 12% of developing breast cancer and men a 7% risk of developing prostate cancer. Men and women have over a 6% risk of developing lung or bronchial cancer. The average odds of a baby being born with any birth defect is 3 or 4 out of 100, or 3-4%. The risks of a woman having a miscarriage in her 20s is 10% and in her later 30s jumps to 20%. Men have a lifetime risk of about 3% of dying in an accident and a woman's risk is 2%.

Probably the most important thing to remember though is that our risk of not having Potter's Syndrome reoccur was 97%. To me, that was huge. Now of course, that is all up in the air and likely never to be resolved. Five children, two with Potter's Syndrome, no answers. I would give almost anything to be back at that 3% recurrence risk.

The Holiday Letdown

Today, I am exhausted, through and through to every fiber of my being.  The baby, on the other hand, must have really enjoyed all the holiday goodies, because I swear it is now blessed with super strength.  Last night for the first time my husband was able to feel baby's movements.  Baby has been sitting so low in my belly that most movements are well below the belt.  But last night he/she was able to wriggle and arm or leg into my upper belly and really go at it.  It was so bittersweet for me because he's always been able to feel it much much sooner, I am 27 weeks now.  However, I am glad that someone finally got to feel this little one besides me, I know his or her sisters are chomping at the bit, especially the oldest, to feel this little one as well.  So I wish baby much strength and hopefully some movement advantage from a much occupied uterus in the absence of fluid.  Twenty seven weeks means I have ten or less to go.  My doctor will schedule a c-section for around 36/37 weeks.  It is hard to believe that I have made it eight weeks  already and have barely over that to go.  These eight weeks have been so long, yet in retrospect, not long enough if that makes sense.  I am glad to have gotten through the holidays and to have seen my family while I still have some semblance of myself left.  Surely the next time they see me I will be destroyed and but a shell of who I was yet again.  It all takes time and time is one thing that seems to be in abundance for me.

My Own Worst Nightmare

At some point and time in the last five weeks I've taken a step back.  Immediately I sought out the support of others, not just others who have lost babies/infants, but others who have lost babies to Potter's Syndrome like we have and will.  I posted our story and gratefully accepted all who shared my pain.  One mom who I have known since after losing Wyatt said that losing another child is our worst nightmare come true.  I thought about that comment.  It is so right, this is my worst nightmare times one hundred.  But I also realized that I am every Potter's Syndrome parent's worst nightmare too.  So many are told, just like we were, that it was just a fluke, that there was no explanation for why it happened to their baby, that it was highly unlikely to reoccur.  That is what I believed and I honestly would have been terrified to find another family who had lost or was going to lose two children to Potter's.  Even more so because now that I am losing two, I still don't have the answers.  Blessedly at the level 2 ultrasound, they scanned my kidneys and I now know that I have two.  Our oldest daughter had some issues with urinary tract infants when she was two so we've had many scans of her kidneys and she also has two normal kidneys.  She did have a urine reflux condition which I inquired if it could be related to Potter's at the time and was told it was not.  However, after doing extensive research on the topic now, it appears they truly don't know and perhaps it was related.  There is no magical test which will grant us the answers we seek.  We have met with a genetic counselor and she had no statistics on the odds of recurrence or any answers as to how this could have happened twice in our family. I have no answers, only the reality that it has happened twice and most likely was not a fluke for us.

And I feel awful sharing my story now.  Because I know that reading it after losing Wyatt would have terrified me and most likely terrifies many, if not all, parents who read this. It's almost too much to think about in terms of percentage and numbers.  I have found statistics saying that Potter's Syndrome happens about 1 out of every 3,000 to 5,000 births.  It has a 3-5% recurrence rate and only 20% of Potter's cases are classic Potter's as in our case.  That makes us quite a statistical anomaly.  It is our worst nightmare come true.

Hearing the News a Second Time

I picked my husband up from work and we drove the rest of the way to the appointment together.  I asked him what he thought about the ultrasound and again told him that I thought something was really wrong.  I explained how I didn't see amniotic fluid, kidneys or bladder and that I had compared these pictures with the other children's.  He lied to me and told me he thought everything was fine.  Usually when my husband tells me everything will be fine I have one of two reactions: anger at his minimizing the situation or I find it comforting and allow myself to let go of whatever is distressing me.  This time it was like I barely heard his words.  All I could do was pray that everything was okay over and over.  I know why he lied and he knows that I know, that's all that matters.

I knew from the minute my doctor walked into the room that the news was not good.  It was written all over her face.  She said that the radiology report was nearly identical with Wyatt's.  No amniotic fluid, no kidneys, no bladder.  The only difference was the absence of the sacs they had seen on Wyatt's spine.  This baby was perfectly normal, minus those important little organs.  The baby even measured right on track at 19 weeks.  My doctor was very caring as she again explained our options and the increased risks involved with each option for me this time considering my prior history of four c-sections.  Because of the time I already had to process the news one of my biggest concerns was preserving my uterus as much as possible so that I could try to have another baby.  There was no question that our decision would be to carry this baby to term just as we had done with Wyatt and she anticipated as much.

I cannot say enough kind things about the compassion that my doctor has showed me throughout this whole journey, and that day was no exception.  She hugged me and cried alongside me as I sobbed for the baby, myself, my husband and our family.  This was the first blow of many.  Now we would have to again tell our family and friends and perhaps most importantly, our children.  That was the most difficult part for me.  I could process this news, I had been down this path before, I knew what to do and when to do it.  Knowledge empowered me.  But it left me speechless when I contemplated what to do with our children at home.

We decided to tell them that evening.  Mommy & Daddy explained that the baby in Mommy's tummy was missing some parts and would die, most likely after it was born.  We explained that Mommy was okay and that baby was okay for now and that hopefully we would get to watch him/her grow bigger and stronger in Mommy's tummy.  But that when the baby was born it would not get to come home with us.  Mommy & Daddy are sad and will be sad for a long time and that it's okay for them to be sad too and for them to talk with us about how they feel.  Our oldest, about 6 1/2, really understood.  She said she felt very sad for the baby and desperately wants Mommy to have another baby.  It's heartbreaking to feel this loss from her perspective.  We felt it was necessary for them to have the knowledge that Mommy isn't going to be normal Mommy sometimes, that she may cry, she may get angry for no reason and that I may have to go to the hospital earlier than planned.

That evening it occurred to me that I had again not purchased one item for this baby.  My husband bought a new carseat but I hadn't wanted to purchase one yet and really wasn't too interested.  It was like I knew that we wouldn't need it again.

The Second Leg of my Journey

One more child.  It was a much desired and planned pregnancy.  My first trimester was relatively mild, but any drain on my energy and even a mild sickness is amplified when I'm caring for three children under the age of seven!  I determined that this would indeed be our last child.  I no longer had the desire to be pregnant or to go through another c-section.  It seemed so simple.

As I entered the second trimester I was so eager to feel my baby move.  I had felt the girls all move very early, between 13-15 weeks, and I just couldn't wait to feel this little one.  I know I commented more than once about not feeling those kicks.  I surmised that my placenta was probably in the way and blocking them.  I knew the baby was okay because I had been listening to it daily with a fetal doppler (we've done so with each pregnancy since Wyatt). Finally, I started feeling little movements here and there and they were mostly reassuring that things were okay.

However, as we approached the 19 week ultrasound I became very uneasy.  The lack of regular strong kicks, feeling not very big for my 5th pregnancy and just intuition I guess left me uncomfortable.  I also was struggling with not "connecting" with this baby and could not understand why.  I clearly remember taking a walk with my husband and girls the night before our ultrasound, just 5 weeks ago.  I told my husband that I had a bad feeling, that something was wrong with the baby or the pregnancy but I didn't know what it was.  My best guess and fear at the time was placenta previa.  Perhaps my subconscious prevented me from connecting the dots or my memories had faded enough to spare me the pain.

We decided to take our youngest two to the ultrasound early the next morning.  I was so excited for them to see their baby sister or brother.  However, I began worrying right away when they started.  The screen was annoyingly turned away from me so I couldn't see.  But when they turned it toward me things just didn't look right.  Of course, neither of the techs said anything about low amniotic fluid, missing bladder or kidneys.  But, this was my fifth ultrasound and I knew by now what I was looking for and that I did not see those things.  The baby was beautiful and bashful, so we were unable to find out the gender.  I hadn't wanted to know, but my husband did and we had planned on him finding out.  The baby just wasn't moving much and had its precious little privates well concealed that day.

I took the ultrasound photos and my two girls home.  Despite an urgent need to empty my bladder I tore open each of our children's baby books and frantically dug out ultrasound photos.  I knew in a second that this baby had Potter's Syndrome too.  The lack of fluid was unmistakable.  It's literally the difference between grey and black.  I sat at our dining room table and burst into uncontrollable sobs for the little life in my belly and for our family and what we would lose again.  There was so much more to process this time, this time we knew all about Potter's, we knew how the pregnancy would likely go and how it would likely end but now I had three innocent children who I could not protect from the pain of losing this child.  When my mascara  was gone I went to the bathroom and cleaned up without saying a word.

Later that afternoon when my mother-in-law came to watch our girls while we met with my OB/GYN, I said nothing when she asked how it went.  I showed her the ultrasound pictures as happily as I could, got in the car and prepared to hear some of the most awful words any person could ever utter, that my child would die, again.