The Hard News

I know our posts have been slowing down a bit lately. My words have dried up. When my writing focused on all the amazing things that happened leading up to Leah’s birth the words poured from out of my heart. They flowed as freely as my tears did as I sat at the computer and wrote and cried and remembered. Thinking about my pregnancy and Leah’s birth and the miracles God worked during that time is easy. The joy those memories bring dulls the pain of loss.

When it comes to writing about anything from June 25^th on, it gets much harder. The only good things that have happened since then have been the amazing support and care we have received from our friends and family.

I have been struggling to write this post for weeks. I have tried recounting the events of June 25^th, to paint a picture of the grief, shock, and devastation of that day, but it is entirely too painful.

That day, the day after Leah was born, our genetic counselor came to meet with us before we checked out of the hospital. I hoped it was just routine, but seeing her at the door made me apprehensive. She had told us at our last meeting that there was no reason, based on the ultrasound, to suspect a genetic cause. The majority of cases of lethal skeletal dysplasia result from dominant mutations that randomly occur at conception, and Leah’s ultrasounds didn’t display any of the characteristics common to recessive (i.e., inherited) genetic dysplasias.

However, the examination Leah received post-mortem indicated that she probably did have an inherited disorder, called short-rib polydactyly. The gene for this dysplasia has not been located, so there is therefore no test to verify the diagnosis. However, families that experience this with one child who chose to have more children frequently deal with it again. It also occurs mostly in marriages where the spouses have a relative in common. Thus they have determined there is a genetic link.

This condition is so rare, that the hospital did not feel comfortable giving us a final diagnosis even after completion of the full autopsy. Instead they have sent everything to the International Skeletal Dysplasia Registry at Cedars-Sinai Medical Center in Los Angeles for expert confirmation. They did this because they feel uncomfortable giving us such a serious diagnosis when they have so little experience with it, not because they believe the diagnosis will change.

Uncertainty

This week we finalized the arrangements for Leah’s headstone. I have been so anxious to get this done because we will be traveling to an area of Wisconsin that is near Leah’s grave in about a month, and I want to be able to go to see the site and the marker on the way home from our trip.

I have read that for many parents it is difficult to finalize these arrangements, and that some people put them off for years. Strangely, I have the exact opposite feeling about it. I want everything set and ready as soon as possible. I believe that my anxiety to finalize her headstone and have it placed on her grave has a lot to do with the uncertainty of our future. This year Jeff and I will both be finishing our degrees and looking for jobs, and it is possible that this search will take us away from Evanston, which has been a good place to call home (it would rank even higher except for the horrible winters). But leaving this area would also mean moving farther away from Leah’s grave. I’m not sure how I feel about that because I’m not sure how I feel about her grave. We haven’t been back since the funeral, so I don’t know yet if being there will be helpful to my grieving and healing or not.

As I walked to the post office with the papers, I just kept thinking "I am going to mail instructions for my daughter’s headstone...this is so unreal." I never imagined this happening to us, and part of me still finds the whole experience unbelievable. Grief is a strange place to live.

Better Than a Tea Party

A friend recently asked me about one of the pictures from the post on Leah’s memorial service. She wanted to know if we had a tea party at Leah’s service, because one of the pictures shows a small cup and plate. Now, for those of you who don’t know me, this was a reasonable question because I would drink tea almost anywhere and anytime. However, the cup filled with juice and the little roll were not a graveside tea party, but rather communion elements.

The cup and plate came from a Bunnykins baby plate set. I had spotted the set at Costco before we got pregnant, and seeing as Jeff loves bunnies, and these particular bunnies are going to school in the pictures, and we both love school, I thought it would be perfect when we had a baby. When we actually got pregnant I checked repeatedly to make sure they still carried it, and it was always there. I decided that I would buy it once we got a little closer to actually using it. As we discussed the plans for Leah’s memorial service, and decided to serve communion, we were asked what type of vessels we would want to hold the juice and bread. We considered bringing a wine glass or finding a pink cup and plate. Then I thought of the Bunnykins set that we had picked out for our baby. I knew it would be perfect.

We decided to partake of communion at the service because it points to the hope that we have, and explains what peace we have, knowing that through Christ’s sacrifice and resurrection the grave will ultimately have no victory and death no sting. For now we feel death’s sting acutely, but we cling to the knowledge that someday this hurt will be erased. For that day, we celebrated. For the promise of that day, we celebrated. For the precious time we had with Leah, we celebrated. We ate and drank with our family and friends, and shared fellowship through our most holy meal, in thankfulness of Christ’s willingness to partake of the sorrows and pains of death in order that we might know more than this limited life. We celebrated with anticipation of the healing that we know God will bring to our broken hearts, and with gratitude for the support and care he has provided for us in the meantime.

What's in a Name?

Many people have asked why we chose the name Leah Veronica for our daughter. The name Leah is of Hebrew origin, and means "delicate; weary," or "tired." Leah was the first wife of Jacob, sister of Rachel, and mother of six of the twelve tribes of Israel. Veronica is the Latin form of the Greek name Berenice, which is derived from the Greek for "bring" and "victory," and means "she who brings victory."

We feel that "weary victory" appropriately describes our daughter. Her body was so delicate and her tiny lungs just weren't strong enough to sustain her. In that sense she was weary, yet she clung to life against all the predictions of our doctors and survived the arduous process of being born, a triumph that we think of with an immense sense of pride. We honor that victory with her middle name.

Honestly, while I would like to say that we planned to name her Leah Veronica with its meaning in mind, we really didn't. We liked the name before we looked up its meaning, and would have named her Leah Veronica even if the names had meant something that didn't fit so well. Once the name Leah occurred to me and I shared it with Amy, I can't really explain how or why, but, I knew that that was her name. I had always imagined that we would have a boy, but after we chose the boy/girl names, I knew Leah would be a girl. Our beautiful little girl. I feel like we didn't really choose her name...that was always her name. We just made it official.

Making a Birth Plan

Pregnancy books and websites abound with templates for birth plans. However, when you have a negative diagnosis, many of those plans don’t fit your circumstances. Our hospital had a social worker that created a birth plan with us, and most websites that deal with neonatal death also provide templates.

Here is our birth plan. Notice that our social worker left out the part about the butt cheeks.

AMY COX AND JEFF KLUG

BIRTH PLAN

Listed below are our wishes for the labor and delivery experience during the upcoming induction of labor of our baby. We anticipate a vaginal birth, and understand that staff will try to honor these wishes, if at all possible.

Jeff would like to cut the umbilical cord.

After the cord is cut, Jeff would like to hold the baby.

If the baby is breathing, Amy would like Jeff to bring the baby to her to hold. If the baby is not breathing, Jeff would like to wash the baby before presenting him/her to Amy.

Amy and Jeff have asked that measurements of the baby be taken after they have held him/her.

Amy and Jeff would like to have prints made of the baby’s hands and feet. In the event this is not possible, they would like to have prints made of an alternative part of the body (to be decided at the time).

Amy and Jeff would like to have a cutting of baby’s hair, if existent.

Amy and Jeff have made arrangements with a photographer from "Now I Lay Me Down To Sleep" to take pictures of them and the baby.

Leah’s delivery went smoothly, so the hospital followed our birth plan exactly. We didn’t get a cutting of Leah’s hair because she was a baldy; everything else was perfect. Our theory with this birthplan, and the grief process in general, has been to do almost anything that others seem to find helpful. We keep everything, because you can always toss stuff out later if you decide it isn’t important. I think it is better to hold on to something extra than have regrets. I almost threw out my hospital bracelet (it was looking pretty scruffy), but someone stopped me and now I am so glad they did because I have it next to Leah’s in her scrapbook.

One thing that I wish I would have had was a plan for after birth. I was so exhausted after delivery that I couldn’t remember everything that I wanted to do or say. Our time was so short that it would have been wonderful to have a reminder list. My one regret with Leah’s birth is that I never sang to my baby. We spent so much time playing music and singing to her while she was in utero, and I had wanted to sing to her when she was born, but I got overwhelmed and forgot.

Providence and Prairie Home Cemetery

A few summers ago my Grandpa and Grandma Reinhardt, Mom, and Aunt Annie came to the Midwest for a family history tour. We dusted off the camcorder and made the rounds first in Oak Park, where Grandpa grew up, and then in Wisconsin where my Grandma's family came from.

My great-grandmother, LaVona Daniel, grew up in Waukesha, WI. She moved out to California after attending college, and settled with her husband in Pasadena, CA. My Grandmother grew up hearing stories of Waukesha and nearby Lake Peewaukee, where the family summered. We had a number of sites to see, including the different homes her family lived in, the Lake, the site of Grandaddy Abell's lumber yard, and the old homestead acreage, which is now a freeway and a massive furniture store. We also stopped by Prairie Home Cemetery to see the family plot. Of course we had no idea where it was inside the cemetery grounds, so before going to see it we had to go to the main office.

Mom and Grandma went inside while the rest of us sat in the car. They took quite awhile, and then mom came back out carrying a big folder and explained that Grandma was inside filling out paperwork. Apparently, the family plot had open graves. The cemetery had no information on next-of-kin, and would have soon reclaimed the graves and re-sold them. Grandma got there in the nick of time. She filled out the paperwork and got joint custody of the graves for herself and her siblings. Since none of the family remains in the Midwest, they figured they would sell them back to the cemetery, and count the graves as an unexpected inheritance from their great-grandparents.

A few months after returning from that trip Grandma wrote a letter to Prairie Home to ask about selling the graves. It was winter in the Midwest at the time, and the plots were covered in snow, preventing the cemetery staff from getting a good look at the area. They were hesitant to buy them back because the family plot has a rather large monument in the center, making the two empty graves on which the monument partially rests unmarketable from the cemetery's perspective. The staff informed Grandma that if a few of the graves appeared marketable when the snow melted then the cemetery might buy them back for around $250 (they sell them for $1,000). However, it didn't appear that they would want to buy them, so the women suggested donating them back to the cemetery. Grandma decided not to pursue it further, at least until the options could be carefully considered. The only thing certain in everyone's mind was that no one in our family would ever want the plots.

After our confirmation ultrasound it was clear that we had to make a plan for our baby's remains. I had read on some grief websites that it is most important to do with the remains whatever it is you think you would do for any member of your family who passed away. They also warned against feeling pressured into any decision by cost or convenience, because regrets add to the already heavy burden of grief. Based on this we decided to pursue burial. I immediately thought of the graves at Prairie Home.

Grandma asked her siblings if they would be willing to sign one of the plots at Prairie Home over to me and Jeff so that we could use it to bury Leah. They all agreed and Mom and Grandma worked with some people at Prairie Home to take care of all the paperwork involved in signing plots over. We got started on the transfer right before our final ultrasound, not knowing or thinking that it would be the last one, just wanting to get it taken care of as soon as possible. So my Uncles Bill and Bob, and my Aunt Donna all had to send in signed and notarized copies of a form. I don't know all of the details because I didn't handle this part, but I know that they all had to work hard to get it done quickly.

Jeff and I were so grateful for their gift, and for the way that God orchestrated events to make that gift possible. It has been very comforting to us to know that Leah is buried near family, because it means that her grave won't be forgotten or lost. Leah is buried next to her Great-Great-Great Uncle Rial T. Rolf(e), and across from her Great-Great-Great Grandfather William H. Daniel, her Great-Great-Great-Great Uncle, William Henry Rolf(e), and her Great-Great-Great-Great Grandparents, Rial Rolf(e) and Anna Abell.

Reflections

When we saw our daughter she was so beautiful, it was hard to understand why she couldn’t live. I knew that her little chest was too small. I knew it couldn’t hold healthy lungs, that she didn’t have functioning kidneys, that she was too small and so weak, but it didn’t connect at all with the full picture...her chest didn’t seem that little, her body too weary. She seemed so perfect.

Leah’s little body was distorted enough to cause death, but not enough to make her seem anything but lovely to me. Her creation stunned me in the moments that I saw her. She came out of me. Marvelous. Incomprehensible. Amazing. We rejoiced in how wonderfully she had been made.

Yet my beautiful child was suffocated by her skeleton, a deformity lurking inside her that prevented her from having the full and happy life I longed for her to have.

I don’t presume to know the mind of God, but I do think that becoming a parent has helped me comprehend his character as a father more fully. I wonder, as he looks upon me, as I looked upon my child, does he feel the same thing? Love for a creation so beautiful and yet so inwardly crippled, longing for his child to live fully in him, unhindered by the deformity of a sinful nature?

Labor and Delivery, Part Two

Around 6 pm it was time for the Cook device. It was also time for dinner, and I was still allowed to eat, so Melody went to pick us up some Chipotle. I was very hungry and really excited to eat my burrito. I also ordered dessert from the hospital food service. Before I ate I had the Cook device inserted. They first gave me a narcotic to dull the pain. They offered me either a shot or an IV with the narcotic and anti-nausea medication. I foolishly took just the shot, thinking I didn’t want to be lugging an IV around because it would further restrict my movement. With the narcotic the inserting of the catheter was still really painful, but once they finished I felt fine. That lasted about half an hour. I tried to eat some of my dinner, but it wouldn’t stay down. Nothing would stay down. Then my mom opened her grilled vegetable burrito, and the smell permeated the entire room, which disgusted me so much I ordered her to leave. Then the pain started. At first it felt just uncomfortable, but by about seven it was very intense.

We called for the IV with the anti-nausea medication. I thought it took forever for the IV to be ready, but my mom said it was actually only about 15 minutes. I got to use my labor breathing to manage the pain, but it didn’t work that well. After they got the IV in the pain was significantly less, and I was exhausted, so I went to sleep. I slept fairly soundly, until maybe 4:30 the next morning, and then I dozed some more after that. Another intern took out the Cook device and checked me around 6 that morning. She was very surprised and pleased with my progress. I was at 7 centimeters. They thought labor could be over as early as mid-morning. They started the Pitocin and, given my experience with pain the night before, they gave me an epidural right away. I called my mom and told her to rush back to the hospital. Jeff had, of course, stayed with me overnight, sleeping in the "Dad’s chair." The nurse called the photographers from Now I Lay Me Down to Sleep. The nurse hooked me up to a machine to monitor my contractions. I couldn’t feel anything, so I could only tell I was having one when I saw my stomach tense up. It was weird because I became so tired, but I didn’t feel like I was doing anything. I went back to sleep for a while longer.

I was supposed to deliver around noon or so, but Dr. G got tied up in an emergency, I think a c-section. He ended up coming back around 2 pm. They set everything up for delivery, and turned down the epidural so I could feel to push. I still really couldn’t feel anything, just a little pressure. They had to pick up my legs for me, because I could barely move them. Three pushes later I heard a really strange suction-y sound and it was done. I somehow knew the baby had survived, but I still didn’t know if it was a boy or a girl. Jeff cut the cord while the doctors were checking me and dealing with the afterbirth. I was so happy and exhausted. God had answered our prayers, and Jeff and I would be able to spend some time with our daughter here on earth.

Given the circumstances, I had a very positive labor and delivery experience. My nurses, Lori, Amanda, and Sarah took great care of me. I had a constant supply of huge cups of cranberry juice and water. All three of them were very caring and kind people. They were so sensitive to our circumstances and gentle in their care of us. Their assistance and understanding really eased the difficulty of a hard situation. Had I not been so stubborn about refusing the IV, I would have felt very little physical pain at all during the entire induction and delivery. I am profoundly grateful for all of the care and support we received from the doctors, nurses, photographers, family and friends during this time.

Labor and Delivery, Part One

On the Friday of our last ultrasound, Dr. O had scheduled us for an appointment to begin induction on the following Monday morning. We spent Saturday trying to be as normal as possible. In the morning we painted faces at our church's booth at Custer Street Fair, in the afternoon we attended a graduation party for one of Jeff's good friends, and in the evening we dropped by a get together for our church's worship team (Jeff plays electric guitar). Jeff and I spent Sunday morning in church, then we chose potential names for the baby, did a little last minute straightening up, and left for the airport. My mom, Mary, flew in from California to be there for labor and delivery. I needed someone with experience to coach me through labor. We had been signed up for a Lamaze class, but canceled as soon as we got the bad news. Under no circumstance was I prepared to sit through a class on labor with couples experiencing normal pregnancies, and I was likewise not excited to read or watch labor preparation videos, so mom did all that for me. We picked her up at Midway, and went home to rest and get ready to go to the hospital. Of course we got to sit in an hour of Chicago traffic first.

We packed our clothes, hit the library for books and movies, borrowed season two of The Office from a friend, and made a big bag of snacks and drinks for mom and Jeff. I had been advised by friends to eat a lot the night before, because often you can’t eat after you begin induction. We went out for dinner to the Cheesecake Factory. It was the first place Jeff and I had gone out to after learning of our pregnancy, so it seemed appropriate. We stuffed ourselves with food and cheesecake. I ate what can only be described as a mountain of chicken fingers, as well as mashed potatoes and part of a burger. I was a machine. After dinner we stayed up late finishing things and making preparations for the family members arriving in the coming week. We had begun to work on funeral arrangements, and managed to get everything scheduled for the following Saturday.

On Sunday night Jeff and I spent extra time talking to Leah and feeling her kick. We had a habit of doing that every night before we went to sleep, lying down and rubbing my tummy and waiting for a response. I turned to Jeff and told him I wasn’t ready to let go, that I just wanted to keep Leah in my tummy forever. He said he wasn’t ready either, but he didn’t think he would ever be ready. How could we be? Who could say, "Today I am ready for my child to pass away," even though you know death is both imminent and inevitable.

The hospital called at 6:30 Monday morning to let us know that they were ready for us. I showered and dressed, and we took one final belly picture. We packed the cooler, blankets, pillows, camping chairs, books, magazines, and movies into our Corolla and set out. They checked me in very quickly and took me to a room in the "quieter" area of the hospital. Maternity wards are designed for happy occasions, not sad ones, so we had to walk past displays of baby plates and baptismal gowns, a reminder of all the things we wanted for our baby but would never have. She would never eat, never be baptized, never take communion, never play, never grow. That was hard.

Dr. G. was in charge of my delivery, and he came in with an intern to talk about the induction. After checking my cervix (wow, was that unpleasant) they told me that it was soft and had a small opening, although it was not yet dilated. They were surprised by this, but were happy to report that it presented me with another option for induction.

They had originally planned a Cytotec induction, which uses a suppository to soften and dilate the cervix and induce contractions. The process can be very long, at least 3 or 4 doses at 4-6 hour intervals to achieve labor, but during that time you are free to move about as much as you like after the first hour, and eat if you are able. I knew all of that from previous meetings. Then they explained something I hadn’t been told: the Cytotec causes extremely hard and fast contractions, so much so that you have to sign a warning indicating you understand that your uterus could rupture or fly out, and that the severity of these contractions is very difficult on the baby. They do not usually use multiple applications of Cytotec to induce labor in a full-term pregnancy because of this. Dr. G explained that while he could only speak from his experience, his opinion was that it is unlikely that a baby would be born with a heartbeat in the case of a Cytotec induction. I felt like leaving. I only went in for the induction for a chance to meet my child, and if the medicine was going to make that next to impossible then I wasn’t interested.

They did have another option, one they have recently started using for full-term inductions, called a Cook Cervical Ripening Balloon (see here and here). It uses two balloons filled with saline to manually dilate the cervix. Then, Pitocin is used to induce contractions. However, it is difficult to get into the cervix when the cervix has not started to dilate, and because of this it would be very painful. It was described to me as an 8 or a 9 pain level on a scale of 1 to 10. In addition, with the Cook device you are allowed to move about, but the catheter hanging out of you restricts your movement. Jeff and I had to make a decision. I was concerned about the pain (and the wisdom) of inserting a catheter into a cervix that was not ready at all, but I had no intention of having an induction that would severely distress my baby, and likely prevent it from being born alive. So I asked if they could do one round of the Cytotec suppository to soften my cervix and make it easier to insert the Cook device, and then insert the catheter and use the Pitocin to induce contractions. The doctors thought it wouldn’t do any harm to try inducing that way, and agreed to the plan.

They gave me the Cytotec around ten, and we popped in The Office to pass the time that I had to spend in bed waiting for the suppository to absorb. At lunchtime I was allowed to eat, which I was very excited about since I had only eaten a light breakfast. The hospital actually had a decent cafeteria with a huge menu of items to choose from. The portions were a bit skimpy, but otherwise it was good. Mom and Jeff had packed sandwiches, fruit, chips, and lots of snacks, so they stayed and ate with me. After lunch we took a little walk. I even had permission to go outside and walk around the hospital, as long as I didn’t wander too far. It was a really beautiful sunny day with a nice breeze, so we stayed out for a while and walked around the hospital and down the block and back as well. It felt good to walk, since the Cytotec makes you feel a little bit crampy. Besides this minor cramping I felt fine during the first eight hours of the induction.

Getting Kicked Around

As a first time mother, I was addicted to pregnancy books and websites about baby development. This "problem" began about as soon as I saw the plus sign on the pregnancy test. From these sources, I learned that around 18 weeks you can begin to feel the baby, and I anxiously awaited my "quickening," the miraculous time that you first feel the baby move.

Of course, one problem with being a first time mother is that you have no idea what it feels like to have a baby inside of you. Pregnancy brings lots of strange feelings to your stomach since it completely messes up your digestion. In retrospect, after weeks of feeling Leah roll, I am positive that I began to feel her around late week seventeen, when I started feeling these odd turning sensations. It was as if my organs were doing acrobatics, except that it was another person moving inside of me. Since I didn’t have any fluid cushioning her from my uterine wall, every time she moved it corresponded. These rolling movements were infrequent, as babies living without fluid have a harder time wiggling around. Thus I didn’t feel Leah consistently until she began kicking during week 23. The first kicks took me off guard, because the ultrasound had told us that the baby had such underdeveloped legs and arms. I wondered what on earth was prodding the inside of my stomach. As the bumps became more frequent and insistent, I realized the baby was kicking.

I usually felt the kicks when either lying down or sitting down and leaning forward a bit. As Leah grew I could feel them even when standing up. She kicked often when I would engage in extended conversation. Since I work at home most weekdays were pretty quiet for her, so on the weekends and the times when we would get together with people she would really go to town. Listening to music and singing along also elicited quite a response. One day a friend from church came over so Jeff and I could teach her some camp songs for kids, and as we sang and danced to the Fruit Song and other favorites Leah pounded my stomach like a drum. Clearly she was her Father's daughter.

Every night before we went to bed, Jeff and I would lie down for kicks and prayer. We would rub my belly to get Leah's attention, and she nearly always responded with at least a few good thumps. Jeff could put his hand on my belly and feel his baby rocking and rolling. Then we prayed for her continued health and for our wisdom to be good parents. Those times of family bonding are memories I treasure. Even though we knew that those kicks might be all the physical connection we ever had with our baby, it was a joyful and special time. We embraced those moments as the best we might ever have, and took care to make time for them.

As we began our very last ultrasound I mentioned to the technician that the baby had been kicking often. She seemed to think that was impossible given the underdevelopment of the baby’s legs, and suggested that it was spinal arching. When Leah was born her legs were indeed short, but they were pudgy and strong. She was definitely a kicker.


I wanted to share this aspect of our pregnancy especially for anyone who may come across this blog who is carrying a child with a negative diagnosis. When you first receive the bad news it is difficult to understand how you can continue to carry a child that cannot live without going crazy with grief. It is difficult, especially when you begin to look more and more pregnant as your baby grows. However, once the initial shock and grief subside you reach an acceptance of your situation, and with that comes an ability to appreciate the little time you have with your baby. There will be continued sorrow, but there will also be joy, and awe, and wonder, and many special moments. We found that our joy absolutely came to outweigh our sorrow. Each small kick brought us happiness that grief could not conquer.

The Third Ultrasound

Before the third ultrasound appointment, Jeff and I reached the decision that as parents we desired to hold and comfort our child as it passed away. We wanted our baby to be able to spend some time with her father, and to be hugged and kissed and told how much we loved her. We decided that at whatever point the doctors felt our baby would pass away, that we would chose a delivery date slightly in advance of that time, by a week or two. We knew that deciding to carry as long as possible risked her passing away before delivery, but we could not attempt delivery without maximizing the possibility of her survival because we knew that when we delivered her life after that would be very short. When we went in we envisioned having maybe another month or so before delivery.

We met with yet another specialist, Dr. O, prior to the ultrasound and told him that we desired to carry our baby for as long as possible, and for her to be as healthy as possible to survive delivery. We told him that our greatest desire was the chance to hold our child while it passed away. Dr. O knew of our situation from discussing it with the other specialists, but had not yet seen the ultrasounds. He assured us that he thought it would be possible to give us a timeline, and that he thought the fluid accumulation would probably not be a problem until later in the pregnancy. He seemed to really understand our wishes, and we felt great going into the ultrasound. After the ultrasound we were to have a meeting with him, a NNICU doctor, and our social worker to discuss a plan. The ultrasound was quick and easy, and we got a great picture of Leah’s face.


During the proceeding meeting we received terrible news. The hydrops had progressed far more than they had expected, leading Dr. O to change his mind about us having an extended pregnancy. Due to the rapid accumulation of fluid in the two week period between our high-level ultrasounds, he declared he did not feel comfortable advising us to wait even another week. In one weeks time Dr. O could not be sure that the baby would be strong enough to survive labor, if it was still alive. He advised us to schedule delivery for Monday (the ultrasound was on a Friday).

This all happened in a meeting with a NNICU doctor, Dr. D. and our social worker. Dr. D offered to be present at the delivery in order to provide us with reassurance and do heartbeat checks. Even though we knew there was nothing that Dr. D could do medically to help our baby, it was so comforting to have a doctor that cared so much about our feelings that he volunteered his time just to hear a heartbeat, something many other people on hospital staff could do. We appreciated his sensitivity and kindness so much.

During the meeting Dr. O and Dr. D went over what to expect after delivery. Whether our baby survived or not, we planned to hold it. Since we had unclear ultrasound images they had to prepare us for an array of possible deformities that our baby might have. They knew that the baby would have a bell-shaped torso, with a small rib-cage and normal stomach. Also, all of the baby’s facial features would appear slightly smashed, from being pushed up against the uterine wall without a fluid cushion. At that point we did not know the sex of the baby, and although they hoped they would be able to determine that at birth, there was a chance that it could be unclear. They also did not know if the baby had hands or feet. If there were hands and feet they could be clubbed or have missing or extra digits. Other possible problems included a cleft-lip/palate, and other missing or disfigured features. We had long been aware of these possibilities. None of them would stop us from wanting to hold and love our child.

After the meeting our social worker helped us prepare a birth plan, and spent time talking with us about the birth. She warned us that we might feel apprehensive about seeing the baby, but not to worry because the baby would look perfect to us (She was right!). We also created a birth plan to bring in with us on Monday. We had thought a little about a birth plan before, and had some ideas about what we wanted. If there were no hands and feet I asked if we could do an alternate print of an ear or the baby’s butt cheeks. That made her laugh. I guess few people are as creative as I am. Truthfully, I just wanted a print, any print, because that is what you do when a baby is born. First you clean them up, then you get them all inky and stamp them on paper. What could be more normal? I just wanted my baby treated as much as possible like any other delivery. And more than anything I wanted proof that our baby existed. Prints are proof.

Leaving the hospital that morning, I felt like I had been broadsided by a bus. I spent the time between weeks 20 and 23 convinced that I could be going into labor at anytime. Then I spent week 23 and part of 24 thinking that we would have lots more time. Then, mid week 24, I found out that time was running out fast. It was a huge mental readjustment from the place where we had been. It was so sad. However, we had prayed and prayed for a clear timeline, and our prayers had been answered very clearly and directly. We finally had the information we needed to make a decision, and after weeks of agonizing we finally felt peace. We began preparing to deliver on Monday.

Leah's Memorial Service

Potter's Syndrome

Potter's syndrome, or more appropriately, Potter's sequence is a term that describes the effects of Oligohydramnios (insufficient amniotic fluid) resulting from any number of renal (kidney) abnormalities or a rupturing of the amniotic sac. It is a sequence rather than a syndrome because it describes a condition which can be the result of various different root causes. There are five distinct types of Potter's syndrome which are distinguished by different root kidney problems leading to Oligohydramnios. These include the Classic Potter's syndrome, which is the result of bilateral renal agenesis (BRA), or the absence of both kidneys. Classic Potter was the probable diagnosis we were given after our first ultrasound with the specialist, Dr. G.

Oligohyramnios is a dangerous and most often lethal condition because amniotic fluid is crucial for lung development. The fluid helps expand the airways and also delivers a vital amino acid (proline) as it is swallowed continuously. Ideally, the fluid cycles through the baby's system and is released back into the amniotic sac as urine (although not waste, since the mother's kidneys take care of filtering waste). Without functioning kidneys there is no urine, and therefore insufficient amniotic fluid which inhibits proper lung development. Additionally, since the amniotic fluid acts as a cushion which protects the baby from being compressed by the mother's uterus, babies with Potter's often have characteristic facial deformities and/or lower extremity anomalies.

In cases where Oligohydramnios is due to a rupture of the amniotic sac (called PROM), the tear can heal, and babies can survive. There are numerous testimonies of such cases on blogs and support websites such as benotafraid.net. However, Classic Potter's syndrome resulting from BRA is known to be 100% lethal in all recorded cases. While kidney failure is itself a lethal condition, for Potter's babies the primary cause of death is pulmonary hypoplasia (underdeveloped lungs).

Jason Clarke from the Patrick Brophy Research Lab at the University of Iowa has written a helpful and informative document on Potter's sequence which includes a long list of useful definitions of medical terminology. The document was prepared for the National Potter Syndrome Support Group and can be found here. The national support group's website was built by a family who lost a daughter to Potter's. In addition to some useful information including a Potter's FAQ (also written by Jason Clarke), there you will find a link to an online support forum.