Chapter 1: I'm Pregnant

“I’m pregnant.” Jeff was unloading the dishwasher and dropped the bowl in his hands onto the countertop. “What?!”

“You heard me. Don’t make me say it again.”

“When?”

“Your birthday.”

I was three months along already. I knew from the moment I got pregnant. I had lain awake in bed every night for the first 3 weeks just staring at the ceiling, not knowing what to do. Or how to tell him. Its not like we were on speaking terms. In fact, we usually tried to avoid each other.

During the first days and weeks I kept seeing that baby just slip out of my womb. Later I realized that this was a premonition. I had implanted low. But it didn’t slip out. It didn’t go away. And I had to tell him. Pretty soon everyone would know. I could hear the questions: “Do you think this is a good idea?” “What are you going to do?” “How did this happen?” And the inevitable “How long have you known?”

I had miscarried twice in my earlier years, once a year before we married and then again a year later, 3 months before I got pregnant with our daughter. After that I stopped telling people I was pregnant until I started getting funny looks from them, their eyes moving down to my stomach and back up to my face with that question in their eyes. The miscarriages were heartbreaking and I couldn’t bear that look of expectation and excitement in people’s faces. But this time was different. We had been done having children for a long time. The marriage wasn’t working. We had my boys and our daughter to raise. We thought it was enough. God had different ideas.

Chapter 2: First Visit with the Obstetrician

After the usual questions from family and friends, we settled down to getting used to the surprise. I made an appointment with my obstetrician. The one thing that scared me the most was going through another delivery, especially in a hospital. Hospital deliveries frightened me. They were so unnatural with all their interventions.

After having delivered 3 children this way already I was desperate to find another way. I was not surprised to find my doctor brushing off my concerns. “I don’t see any way around this,” she said. “I follow all of ACOG’s standards. I can’t do otherwise.” She was a good doctor and I understood her position. But for once I needed somebody to understand mine. She made an attempt at addressing my concerns but gave up quickly saying that there were no other alternatives. St. Louis doesn’t have any alternatives. There are no birthing centers here. Midwives cannot deliver in hospitals. My prenatal care went on as usual.

By the 6th month I had located a very short list of local midwives and one doctor who did home delivers in St. Louis. I interviewed one with more than 26 years experience delivering babies. She went over my prenatal history and determined that I was indeed a candidate for home birth. But there were legal issues. Missouri was about to make it illegal for free standing midwives to deliver babies without direct support from an obstetrician. I had had enough problems just explaining to my family what I wanted to do. Now this?! The midwife and I decided to wait to see what the Missouri Legislature would do and I continued seeing my obstetrician.

Chapter 3: Camping Challenge

In the meantime the Missouri Department of Conservation was holding a contest: visit 12 specific conservation sites in Missouri during the year. We would receive conservation books, binoculars, and various other sundry items after we documented visits to every 4th site. Visiting all 12 would enter us into a drawing at the end of the year for new camping equipment. This sounded like fun and we are always up for a challenge. My children and I loved camping and nature. I decided this was just the thing to do with them before the baby arrived. We mapped it out and thought that we could do them all in about 10-12 days. My obstetrician wasn’t a fan of this trip. But then her idea of camping was backbacking through mountains. We happen to like flush toilets, sightseeing, and tours. She had no complaints about any of these things and we left on our trip when I was 32 weeks pregnant.

Now, I love my kids dearly. But let me tell you that traveling with 2 teenagers isn’t easy. We’d been on the road only a couple of hours before I was tempted to leave some of them in the middle of the highway. But I was determined that we were going to have a fun bonding experience before the baby arrived. Patrick was learning to drive and practiced on all the state park roads. Being teenagers, he and his brother didn’t really believe that I would be able to find all the conservation locations on our list. This just added to the stress.

We started out by visiting a Nature Center about 4 hours from home then headed down to Branson and Silver Dollar City where the first 4 conservation areas were located. We spent 4 days there camping in a state park, touring show caves, visiting fisheries, swimming, doing some short easy hikes, and arguing. My daughter didn’t want to leave. Her brothers made a swing for her and we took that to each of our stops on the rest of the trip. We spent a day in Silver Dollar City and another day at the original Bass Pro Shop. What a store that is! Museum and store all rolled into one. A great learning experience. Even I enjoyed it immensely.

Our next stop was between Springfield and Kansas City. It turned out to be a lonely conservation area popular with hunters during certain seasons. We checked in with the agent at the office who was surprised that we intended to stay the night. Yes, they had camping sites. Yes, they had toilets. No, they didn’t have any other campers that night, running water, stores, or security; all the things we were used to. But it was beautiful and we were tired. We set up our tents on the shore of a lake, had supper, and passed an uneventful evening around the campfire. The next morning we woke up, stuck our heads out of the tents and had the most spectacular view of the whole trip. The entire campsite area and lake was full of geese! Flocks of them. Covering every inch of ground. We’d never seen anything like it before. We instantly realized what all those little “piles” were that we saw all over the place the night before. As amazing as it was though, we also realized the difference between Conservation camping and state park camping. We decided to check our maps and plan on state parks for the rest of the trip.

After filling up our water jugs at the nearest little store we could find, we spent the next day visiting friends that lived in Kansas City. Weston State Park was next on our list, close to Kansas City, the Pony Express in St. Joseph, a few wineries, museums, and several other conservation sites we hadn’t visited yet. We spent 3 days in the area and they were hard days. Patrick had left our hammer 100 miles down the road in that lonely Conservation Area where we had spent the night, so we had to find a hardware store before we could set up camp. Cabin tents are not like the modern tents we have now. They absolutely MUST be staked down to put them up. The Pony Express was harder to find that we thought it would be. We got lost every time we tried to find something in Kansas City that we wanted to see. Not to mention the “nuclear mosquitoes” that inundated Weston and eventually sent us fleeing for comfort to some other part of the state. Still, we had fun there. The park ranger took pity on a heavily pregnant lady and sprayed our campsite heavily each night, to the dismay of our “neighbors” who were told it wasn’t part of the service. We stayed up late one night playing cards with some of the other campers. The kids learned that pet ferrets left to run around in the bathrooms STINK to high heaven. And even the local varmints will not come in a driving rain to steal chicken abandoned over night on the grill.

Our final stop on the trip was Mark Twain State Park, only a couple of hours from home. We visited Hannibal and all the local sites there. We were almost finished with the challenge the Department of Conservation had set before us. We picked a campsite close to the restrooms and since the kids were loath to return home after so long on the road I told them we could stay until the food ran out. Well, that was one of the kid’s favorite camping spots. The boys set up Ouisa’s swing and the two youngest when around to the older folks in the campground telling them how much fun they were having and that their mom said they could only stay as long as we had food. In came the donations! I was stunned to see my children coming back to camp with armloads of canned goods and watermelons! We spent the next couple of days waking up to the cardinals that came in close to our camp for the nuts we would give them, swimming, relaxing, playing cards, and listening to the raccoons forage the trash cans with extreme regularity. I was able to rest up considerably during our stay there. And the baby grew a lot. Sleeping outside was good for us. And Patrick got a lot of practice driving. But it was eventually time to go home.

Chapter 4: Finalizing the Birth Plans

When we arrived home the first thing I did was call the midwife and sadly learned that Missouri had passed a law that made it illegal for midwives to deliver without direct support from a physician. In the St. Louis area, there are no physicians who support home births by midwives. In fact, there was only one physician who attended home births and he wasn’t particularly supportive of midwives either, though they did assist him during homebirths. I was absolutely distraught but decided to see him. I was beginning my 8th and last month and had no more time to waste.

Again it was determined that I was a good candidate for homebirth. My pregnancy had been completely uneventful. I had remained active. My history was good. So I called my obstetrician’s office and told the receptionist that I was going to have my baby at home, wouldn’t be keeping the rest of my appointments, and requested that my records be sent to my new doctor.

What we didn’t know was than my baby was living with a time bomb. In time it was destined to go off. None of my prenatal care showed any signs of abnormality. It wouldn’t have mattered if it did. Awareness of vasa previa was non-existent. Even if she had done the appropriate tests, it wouldn’t have been noted. As they say, “you find what you look for”. Vasa previa was not something anybody ever looked for. It was just “too rare” and considered undiagnosable.

My mother was dubious about my plans to deliver at home but was supportive and attended birthing classes with me. The birthing classes were held at the midwife’s home who worked with my new doctor. I didn’t know it then, but in retrospect it was a blessing to have this doctor and midwife team attending me. We were given lists of things to have on hand to prepare for the birth. The midwife visited our home. And we waited.

Chapter 5: The Time Bomb Goes Off

I usually go past term with my pregnancies. I don’t efface weeks before like most women do. But this pregnancy was different. I told my doctor exactly when my baby would be born. At my last appointment he told me it would be a least a week more, maybe two. “No”, I said, “this baby will be here on Friday”. He just smiled. We were both wrong.

Thursdays have always been the day catastrophes pick to land on me. They aren’t bad days. But when bad things happen, they always happen on Thursday. The tragedy awaiting us was no different. The day before my baby was to arrive I woke up about 6 am. The baby was awake too. I rolled over, rubbed my tummy, and whispered that it would be very soon before we would finally get to meet each other. We drifted back to sleep. It was the last pleasant sleep I’ve ever had.

An hour later I woke up. Something was strange. I didn’t know what. I reached down between my legs and brought my hand back up to my face. It was covered with blood. Thick with blood! I got up and flew to the bathroom dripping blood all the way. The only thing that went through my head was “this isn’t good”. I yelled for my teenage son Dennis to phone the doctor and bring me the phone. The telephone list had been pasted on the cupboard next to the phone for weeks. But it still seemed like an eternity sitting there in the bathroom waiting for him to bring me the phone. The bleeding had stopped. A small amount of amniotic fluid dripped into the toilet. The baby turned sideways in my womb. I put my hands on him and wondered if this would be the last time I ever felt him move.

Finally the phone! Dennis had called the midwife first. She was getting dressed and on her way. The doctor was on the phone now, instructing me to go right away to St. Mary’s Hospital. No, there were no contractions; no, there was no pain at all; yes, physically I felt fine, but shook up; would I be able to come back home to have the baby? No way. I was high risk now and possibly had placenta previa. They wanted to put me on monitors and do an ultrasound first thing. He would meet me at the hospital. I was to go in through emergency.

I didn’t wait in emergency. They immediately took me up to the maternity ward and hooked me up to monitors. He was alive. I knew he would be. Something went wrong, would they find it? I had no hopes at all that they would but was absolutely certain, serious though this was, that all would be fine. I felt fine after all. I knew that they could get a baby out as fast as 6 minutes if they had to, but I really didn’t think that would be necessary. Everyone suspected placenta previa. I felt fine. The bleeding had stopped. My blood pressure was fine. All would be fine. The resident on call discussed getting the ultrasound done and left the room arrange it. Meanwhile my midwife was watching the monitors. She didn’t like what she was seeing. Yes, the baby’s heartbeat was 130. Then it wasn’t. Experience with all my other hospital deliveries told me not to trust the monitor. All too often as soon as they’d adjust the monitor leads, they’d find the heartbeat normal. With my other babies the monitors had only served to make me more nervous as someone was always there watching to tell me when the next contraction was coming. Not this time. This time there was fear on the midwife’s face. She started ringing for the nurse then ran into the hall calling for the resident. My doctor arrived as the surgeon on call and the ultrasound technician came into the room. They were taking the baby NOW. IVs were being started. They did the ultrasound anyway. I remember the technician saying “I’m not finding anything,” then my bed flying down the hall. I couldn’t see. Perhaps I didn’t want to. The anesthist stood my my head strapping my arms down on little tables that came out at 90 degree angles from the bed. I felt as though I was going to fall off they had it tilted so badly. Someone told me that was to help the baby. I couldn’t figure out what was taking so long! I thought they could take a baby quickly. I was so scared. I rolled my head from side to side blind to all the lights and commotion and muttered over and over “I’m so scared, I’m so scared”. And I waited. There! I felt it. The anesthetic. This is it, this is it. Oh blessed anesthetic. I took a deep breath as I did when I was 8 years old and they were taking my tonsils out. Only there was no gas this time, just IVs. God get me and my baby through this.

Chapter 6: He's Here!

Dennis immediately phoned my father after I left for the hospital. My sister Angie had just walked into the shop as the call came in. Dad put the phone down, looked at her and said “it’s Cindy. Something’s wrong. Are you coming?” They got in the car and immediately left for the hospital, my dad phoning my mother from the car. She met them at the hospital.

Jeff had left the house too, and headed to the hospital, not knowing what to think. In some ways I’m sure that he was relieved I was there. He parked the car and as he walked over to the hospital he looked up at the clear blue September sky and heard a voice he will never forget: “this is the day your son is born.”

The nurses tried to reassure Jeff with words like “they will get him out fast enough”, and “there may be no damage at all”. The longer we were in surgery the less reassuring their words became. “You probably won’t notice anything, except maybe in math.” “He’ll look just like any other kid.” Nobody knew what was going on. Our child was dead. He was pulled from me not breathing, grey, and dead. In their rush to get him out they had cut his head with the scalpel. I don’t know if blood was on hand, but was told later that they had performed CPR on him for a long time before his heart began to beat again. He was given 2 units of blood before leaving the operating room.

The first words I heard were “it’s a boy. Is his name Nathan?” I nodded yes, feeling blessed that it was over and that I had a son. Nathan! He’s here. A son! My baby was a boy. How sweet is that?! Oh, thank God it is all over!

I don’t remember it, but was later told that my midwife and doctor were there with me as I came out of the operating room. She noticed there was no pain medication in my IVs and leaned over to ask me how I felt. Though I don’t remember that question, I do remember my response. Automatically I began saying how bad it hurt. It was several minutes after I started saying this before I wondered why I started saying this. But it did the trick. Immediately morphine was administered.

My doctor, midwife, and the surgeon all met back in my room where my family was assembled. My father was in a corner chair on his phone announcing to the family that Nate had arrived “Sicilian style, thank God!” and that I was going to be fine. I don’t remember seeing my husband, sister, or my mother. I remember the midwife and doctor standing next to my bed, and the surgeon who had just delivered Nathan showing them the membranes from my placenta. I heard his words before I could open my eyes. He was explaining velamentous cord insertion. I was still heavily anestatized and consequently couldn’t visually concentrate on what he was showing us but remember wondering how on earth the cord could insert into the membranes instead of the placenta. There just wasn’t any part of the membranes to attach to! How could he have grown inside of me like that? Nobody had said anything about Nathan yet. But he was here and here was this nice, interested doctor actually showing us what happened. I couldn’t wait to see my baby.

Chapter 7: The Hours After

They explained to me then that Nathan would be transferred to Cardinal Glennon Childrens’ Hospital across town. OK. He had a rough start. Information seemed to come in in bits and pieces and the hospital staff acted like I should already be aware of what had actually occurred. I would get to see him only for a moment before he was transferred. No, I wouldn’t get to hold him. I might get to touch him. He had been in desperate shape at birth. They’d had to give him blood. He’d need to have more. He’d had had to be aggressively revived.

After what seems like an eternity they brought Nathan to me. In an incubator box covered with wires and tubes. Wires and tubes going into him. His eyes were open and he was looking at me. I had to let them take him to Cardinal Glennon. Where he would recover. He looked so much like ET in the movie, that I immediately knew his middle name should be Elliot, like ET’s friend. After only a few moments they wheeled him out and took him away.

The staff was concerned about putting me on the maternity floor. I insisted it was alright. Didn’t I just have a baby? They then gave me pictures of Nate before he left the operating room. Pictures? What are they doing? What are they saying? I’d given birth 3 times before. Nobody had ever taken and given me pictures of my newborn before. A private room was arranged on the maternity floor and a perceptive nurse suggested that my family get something to eat and meet me there later. She turned to me after they left, saw my quivering chin and teary eyes and asked me if I wanted to be alone for a while. Incapable of speech, I just nodded and she left. I spent the next 45 minutes crying my heart out.

The rest of that day was a blur. People coming in and out. Drugs that did nothing for the pain. My children made sure I was never alone and always had someone stationed next to the bed to press the morphine button at the allotted time. Mostly they handled the calls too. All but one. My ex-husband’s sister delivered a baby girl that very same morning. Their family was all excited that Maddy and Nate were born on the very same day. They had no idea. It was one of the hardest phone calls I ever had. To hear that shock. And hear their bubble burst. I could see their faces through the phone lines. It was only the first time. I would see that look repeatedly in other people’s faces during coming days and weeks.

Chapter 8: The Next Day

The next day my only thought was getting to Nate. I couldn’t leave him all alone over at another hospital. He needed his mother if he was going to get through this. I could not abandon him. When I told the nurse I was going she initially just laughed and said “I’d like to see you try.” Still, I insisted and forced her to help me get up out of bed. I was still hooked up to IV morphine, saline drips, IV antibiotics, and a had a foley catheter in place. Very slowly we got my legs to the side of the bed and she ran the controls until the bed had me sitting up. I put my feet on the floor and holding the nurse’s hand, attempted to stand. I couldn’t do it! I doubled over and cried in pain. The nurse simply said, “see?” But she looked into my anguished face all covered in tears and had to agree that the next time would be easier. She came back with a wheel chair a little while later, helped me dress, took most of the tubes out of my body, and gave me a “pass” to leave the hospital.

In the meantime I had spoken with Nathan’s doctors over at Cardinal Glennon. It didn’t look good. His pediatrician was honest and up front with me, but the resident could only keep repeating how sorry he was. I immediately demanded the resident not be allowed anywhere near my son again. As sick as he was, the last thing he needed was someone else’s negative energy around him. Jeff arrived and we left.

Now let me tell you something about moving about too soon after surgery. People tend to think that C-sections are routine and a piece of cake. I’m here to say that they are major surgery. The pain. Oh God, the pain! Getting into and out of the wheel chair is hard enough and takes at least 5 minutes in that state. Every single crack and small bump on the road is like another knife going into your belly. But I couldn’t stop to think about that. All I could think about was my son.

Jeff and the kids had been to see Nathan the day before, so Jeff knew just where to go. Sitting there next to his bed in the NICU was horrifying and sad. He was the biggest baby there. But was also the sickest. He couldn’t maintain temperature, pH levels, or his blood pressure. He couldn’t urinate at all. The drugs weren’t keeping him stable and he was on a ventilator. They’d done EEGs the day before and that morning before we arrived and found nothing. Nothing at all. No brain waves. One of the nurses had made a fancy little nameplate for his bed out of Mickey Mouse shaped construction paper. I got to hold him for a little while in a chair next to his bed. How he changed the moment they put him into my arms! He seemed to relax. We looked at each other and I could see how hard it was for him. I tried to smile through my tears. But I ended up telling him only that I loved him and that it was alright to go if he had to. I wanted to sit there all day with him in my arms, but the truth of the matter was that I was too weak and feverish and in too much pain to hold him more than a few minutes.

The NICU staff seemed to think that his kidney function was the most pressing issue so they called in specialists who arrived while we were there. They confirmed that Nathan was too sick to stand a kidney transplant. They were very somber and stated that it was their experience that his kidney function would likely improve if the rest of him did. Nobody was holding out much hope for our son. He had been dead too long before they got him out. His organs had already begun to shut down. Still, I held onto a sliver of hope. That’s all we had. We had nothing else. We had to take one moment at a time and just hang on. I just couldn’t fathom my child dying. That’s just not something a parent can do. Yes, I was realistic. He was very, very sick. He could die. We were waiting for a miracle.

Chapter 9: That Night

Soon after returning from my visit with our son my husband’s pastor came to visit. I could not understand why he did because he wasn’t my pastor and I didn’t attend his church. My guess was that he wanted to do the right thing and offer his support. All right. That was nice. Only it wasn't. He focused on why these things happen to people. And he wanted Nathan baptized a Lutheran. Both things I had severe issues with. For one, it didn’t matter “why”, now did it? It WAS. That was the simple fact of the matter and one way or another I had to get my family through this. To me that was the only issue at hand. I had a son who could die and 3 other children who would need everything I had to give them in this time of need. As for baptizing Nathan, I simply sighed and informed the pastor that my family was Catholic, wouldn't particularly care for him being baptized Lutheran, and that I didn’t personally believe that Nathan would end up in hell if he wasn’t baptized. Unbelievably this started an argument over religion right there at my bedside! I was frantic to get away from him. I had far more immediate and important things to worry about, like how on earth was I going to help my son to die? I only knew that I might have to and this weighed very heavily on me.

Before the pastor was finished preaching the phone rang. At first I thought I was saved by the bell. But I wasn’t. It was Nathan’s doctors. He was getting worse and the pediatrician wanted to discuss “heroic measures”. My parents were just walking into the room. I told the doctor that I would be right there and they hurriedly got me a wheelchair, making phone calls to the rest of the family as we left. I left instructions with the nurses on the way out that my husband’s pastor was not to be allowed back into my room. I could not imagine a more heinous creature in the face of what we were going through.

Back at Cardinal Glennon we discovered that Jeff and the kids had just left the NICU. A security guard was sent to intercept them before they left the hospital. We were made to wait outside the NICU because another family was in there with their baby. I objected strenuously and was given explanation after explanation that parents need time alone with their children and wouldn’t I want the same consideration? I told them that I damn well didn’t care, my son was dying and they were not going to keep me away from him. They finally relented and Jeff and I went in. Nathan’s doctors and my parents were there, my doctor was there, and one of the midwives he works with was also there after having asked for that particular shift on the floor. She had some training with hospice, as did my mother who was a hospice home care nurse.

The situation seemed clear to them. It wasn’t clear to me, except that everything was failing and they seemed to think that Nathan was going to die that night, if not within the hour. They wanted to take him off the machines. I, on the other hand, wanted a miracle. I wanted my son to have every chance to bounce back to us. So I asked questions to make sure. Lots of questions. I couldn’t rob him of even the slightest chance he might have to stay with us. Some of the staff got impatient. Others just waited for us to make the decision they knew we were going to make. My doctor broke down in tears and ran from the room.

Finally I understood what the rest of them already knew, that Nate was actively dying and there wasn’t anything more anybody could do for him. I did the only thing a loving mother could do. I gave the order to stop the life support and asked for my son. If he had to die, it needed to be in our arms, enveloped with love and not was not alone in that crib. Reluctantly Jeff agreed. He held Nate for a few moments and then Nate’s nurse placed him in my arms. They pulled out the breathing tube. Nate squeezed my finger. He didn’t die. He cried. Something they said he was too weak to do. They moved us into a private sitting room where we could all be together and the children came in to behold their brother. Nathan’s aunts were waiting to meet him too.

The first thing the kids said on seeing their brother was “hook him back up!” We were all so scared. Acceptance came slowly. They hadn’t been in the NICU as Nathan’s doctors and I discussed his condition and prognosis. I explained that they needed to be very strong and brave for their brother because he needed them now more than ever. My 6 year old daughter was too afraid to hold him, though we repeatedly encouraged her to. Someone from the hospital staff brought us a disposable camera. More pictures! How could they think like that at a time like this?! But I’m so glad they did. We took those pictures. And footprints to boot. We held him and loved him. And he didn’t die.

After about ½ hour I told the hospice nurse that she could let the others come in one at a time. They came and the strangest thing happened. Nathan smiled and cooed and cried and looked every one of us in the eye. My mother later said it was if he was trying to take our faces with him into eternity. There was sadness in that room, yes; but the overwhelming feeling was pure joy. Babies will do that to you and Nate was no different. He didn’t LOOK so sick there in our arms. He did everything they said a brain dead child could not do. He sucked our fingers, cried, took cat naps in our arms, and bonded.

My mother always wanted to be a hospice nurse. It was the only nursing she ever did. She loved her job, hard as it was at times. She sat there in awe of what was happening to our family. She’d never witnessed hospice like this. We got our miracle. It just wasn’t the one we wanted.

Finally most of Nathan’s aunts went home to wait for the call. My parents went to get something to eat. My sister Angie stayed with me and the children who were making plans to spend the night with me there in that room. Nathan was hanging on. Perhaps he would make it after all. The nurse came back and we bathed his head to rid it of the marks from the EEG. We changed his clothes and his diaper. They called my hospital to see what I needed in the way of drugs. I still had a heplock in for morphine and antibiotics. Plus I wasn’t eating. They put me on the sofa in that room and just as they did Patrick said “I don’t think he’s breathing anymore.”

“Let me hold him”, I said. I held him in my arms in front of me, staring into his face, willing him to live. He took one last dying breath and expired from this world. I sat there not believing he was gone. I heard wailing. Then crying. And I put him to my shoulder and wept, rocking back and forth, wanting like nothing I’ve ever wanted before to die right there along with him. My heart was broken. My sister will never forget seeing the looks on all our faces as Nathan passed over. It is the greatest sadness one will ever experience. I remember looking at the clock. Ten minutes till 11pm. I wish the old tradition of stopping the clock was still the norm. It just didn’t seem right that time should keep going.

I don’t remember the rest of the night except that Patrick and I cried for what seemed like hours in each other’s arms. I have no idea of how I got back to the hospital or how we spent the rest of the night. I wanted Nathan back so very badly. Sixteen years old and Patrick was left to spend those first hours with me. The next morning he filled in Nathan’s birth certificate.

Chapter 10 - The Funeral

Losing a child is an unspeakable, suffocating horror. It is one I can’t even begin to explain. I could not breath. I could not believe he was really gone, even though I knew he was. I was screaming constantly inside. I couldn’t stop crying. Not even for a minute. None of us could. My neighbors later told me that they found Jeff wracked in tears and clutching the blanket to his face that I had made for Nate as he paced up and down the back yard. I left the hospital a day or two early to find our home inundated with flowers. Letters from people I barely knew were coming through the mail. People we expected to be right there by our side disappeared and never spoke with us again. But others came out of the woodwork to take their place. It is amazing what a tragedy can bring out in people. Especially the ones you think you know!

Funeral arrangements had to be made. Jeff and I met with my parents and aunt and uncle. Dad and Uncle Tony were terrified at the costs involved. When a parent dies, there is money or an insurance policy to cover some or all of the cost. When an infant dies, there is nothing. Uncle Tony mentioned that there was space in the lots my grandparents were buried. Oh what a sweet thought! They would look after him. However, Jeff and I decided that cremation would be better for us. If we had to let him go, we would scatter his ashes. For some reason, Jeff gets attached to funeral homes. So we contacted a local funeral home we had visited many times and that Jeff had liked. Imagine our surprise when we were told that they offer their services for free in cases like this! My father breathed a sigh of relief.

There is so much I don’t remember about this. I vaguely recall picking out a simple urn for his ashes. My son. My son was going in that box. Thankfully there wasn’t too much for us to do ourselves. The funeral home offered a chapel for a visitation and an organist to play music during the service. It was to be a memorial. Our doctor’s midwife offered to sing and my parents and she helped to write something up. My husband’s pastor called on the phone to insist he conduct the services. None of us could agree to that after his visit to the hospital shortly before Nathan died. Instead, my father suggested a customer of his who was a pastor at another church. He was a Lutheran pastor, which my father thought would be appropriate since Jeff was a Lutheran at that time, even though we are all Catholics. Pastor Kovacs was happy to officiate and knew my doctor’s midwife well. So all was set. The only thing I asked was for Pastor Kovacs to read the eulogies as no one would be able to do so; and that the organist play Brahm’s lullaby. We opted for a private service because none of us were prepared to face the world. My sister Angie took me to get some of the photos blown up and printed and framed. We ordered more flowers.

Then it happened. The children came to us en masse all in a panic. They wanted to see Nathan again. My greatest regret is that we didn’t bring him home and keep him here with us during this time. I should have also been there at his side when they cremated him. It’s too late for that now, but who would have ever thought that you had to plan these things in advance? It was the furthest thing from my mind. Everything else had been so carefully planned out. I even had a birthday cake in the freezer that we were going to eat the day he was born. I never did that with any other child. Anyway, we called the funeral home. It wasn’t too late.

We packed the kids in the car and went to see our son one last time. They brought him to us wrapped in his blanket and wearing the socks and handmade shirt we had dressed him in at the hospital before he died. We held him and cried. I finally got a chance to check out his little body. Ouisa finally held him and cried because she had been too scared to hold him at the hospital. All I could say to my son was how sorry I was. He was a perfect little boy. And he was dead.

The memorial service was beautiful. We held it on a Sunday around noon so that the home would be empty. My sons sat next to me and held me up when I slumped over during the lullaby. My brother was on time for something for once. Our midwife sang with the voice of an angel and Pastor Kovacs service was empathic, supportive, and touching. I couldn’t handle any more and was the first to leave, carried out by my doctor and midwife. We went home. Soon the rest of the family arrived and my aunt and uncle went to work setting up food for everyone.

I know there were people who felt hurt and left out because we insisted on a private service. My hope is that they understood how painful it was for us. Their support was amazing. A group of women at my husband’s church went to work cooking for us. My neighbor came and cried with me and fixed supper for us every night for a week. When I finally got a chance to sit down and thank her for what she did for us I explained how badly I felt because there was no way to repay a kindness like that. Sure I could fix her supper for a week, but it would be anywhere near the same. Judie then said the words I will never forget: "You can't. So you pass it on. We had a family tragedy 10 years ago and someone did this for us." Hearing those words was a life changing experience for me. Pastor Kovacs called to check up on me too. “I don’t know what to do with myself anymore”, I told him. “My sole purpose in life was to love, nurture, feed, and raise this child. Now he’s gone and I have nothing to live for anymore.” “That’s normal”, Pastor said. Well, it was a blessing to hear that, but waiting it out was hard. So I did the only thing I could do. I cried. I cried add day every day and then some. Within 3 weeks I was back into my pre-pregnancy jeans.

Chapter 11 – Forrest Gump

After a few weeks Jeff and the kids took me to the park. I held my belly and walked around part of the park. The next day I began walking my daughter to the school bus stop, about four blocks away. I would drop her off and then wander off. In no time at all I was walking several miles a day, sometimes not arriving home until after lunch. To this day I don’t know what came over me. But the walking was therapy. I walked. Just walked. Prayed every step of the way. Prayed for the way. Prayed for the strength to accept whatever my path was to become. I couldn’t deal with anything anymore and was forced to give it up to God. I knew the only way to get through my grief was to experience it. I knew it would take time. But it was too big and too deep and too tall to work through myself. I asked Mary to help me. I knew my life didn’t compare one whit to her’s, but she was a mother who had lost a son, and I had nobody else to turn to. She sent angels to carry me and a peace to envelope me. I could feel those angels holding me up by the arms and walking me through the miles. Nobody else ever understood the peace.

When I was conscious enough to witness other people on the streets with me I pitied them. Everyone racing here and there in an all important hurry, or trying to stave off the inevitable decline of the body. I found myself living in a totally different world than I ever knew. Suddenly I knew what was important, and it wasn’t anything I’d ever believed was important. These people didn’t get it. And why did it take something so awful for me to learn it? My son had to give his life so I could become a better person? What kind of person was I? What kind of person was he that he would do this to save his family?! I missed him all the more.

My family became curious about these walks as they heard from the neighbors where they saw me each day. They began to measure the different routes with the car. Some days I walked only a couple of miles. Many days it was 5 or 8. As time went on I was able to incorporate small shopping chores into my walks. My ex-husband had another young son and they thought that caring for him would help me. So we took Nathan’s things out of his unused crib and lowered the mattress for Colin. He went with me on my walks and I incorporated shopping bags, diapers, and an umbrella into the stroller. While he slept I meditated and prayed. And cried.

Chapter 12 – Organizing the IVPF

As sad as his loss was, we could all feel Nathan with us constantly, almost like he never left. It helped us learn to live with his loss. I still didn’t understand exactly how this could have occurred. So during all our grief, and all my walking, I delved into learning what vasa previa was. A neighbor who was an ultrasound technician brought me her text books and did an internet search on the subject. At my 3 week post operative visit with the surgeon who delivered Nate I learned that he had taken slides of my placenta and had been giving lectures on my case story. I vividly remember as my mother put me into the car after that doctor visit a voice from above telling me that my life has just changed forever and from that moment on would never be the same. I had not a clue as to what was meant by this. At the time I was upset with the surgeon’s inability to answer all my questions. The next day I took the photos of my placenta that he offered and went straight to the local medical schools with my list of medical articles.

At that time there were only 6 published articles on vasa previa and I had to visit both medical libraries in town to obtain copies of all of them. I was dismayed to learn that it was known for some 30 years that velamentous cord insertion could be prenatally diagnosed. Doctors didn’t know this. It was only standard of care to check the cord insertion at the baby’s belly button. But there it was, documented in a medical article from the 1960’s way before color Doppler, 3D and 4D technology, and computers. I continued to read and discovered that vasa previa could be diagnosed and survived. All the other articles were case histories on survivals. The one thing they had in common – prenatal diagnosis. These mothers were diagnosed by accident while their doctors were following up some other complication. They all suggested that transvaginal color Doppler ultrasound could be used to diagnose and save these children. I went back to my neighbor’s ultrasound text books. Yep, there it was – one paragraph on vasa previa. It essentially said that these babies die, nothing more. We’d fallen through the cracks.

Initially it was a comfort to believe what my doctors had told me: that velamentous cord insertion was very rare, and that vasa previa was even more rare; that it was incompatible with life; and that it could never, ever happen to me again. What I was learning on my from their own materials was not the same thing. Velamentous cord insertion is not at all uncommon. It occurs once or twice in every 100 pregnancies. It just doesn’t usually cross the cervix and is therefore little to no risk to most infants who have it. Vasa previa (and velamentous cord insertion) is caused by a low-lying placenta, hence to me this meant that whatever caused the low-lying placenta could cause another one, and potentially another vasa previa. Incompatible with life? Well, here were case histories on people whose babies survived vasa previa even though it has a 50-100% infant death rate depending on who you quote. One thing I did know was that nobody I talked to, in the medical profession or otherwise, knew anything at all about vasa previa. Doctors and nurses that I knew asked me what it was. Besides the surgeon who delivered Nate, the only other person that had heard of it was the midwife I originally wanted to deliver him and couldn’t because Missouri law had outlawed midwives during my 8th month of pregnancy. Oh yes, she knew about it. It was on the list of things that could go wrong during a delivery. Why didn’t anybody else know this? The information is there. But nobody was looking. So I started doing web searches for people who had experienced it.

Now the internet was pretty new back then. For several years there was nothing out there on vasa previa except those first 6 medical articles listed in the Pub Med. Most people weren’t on email yet, except maybe at work. Then suddenly, about 4 years after Nathan died, there was something. A lady in the Netherlands had just lost her baby to vasa previa and started an email list. I was the 8th subscriber. There were new subscribers every week.

Well meaning people often came up to me saying that they’d lost a child (or two!) and that they knew just how I felt. Ever since Nathan was born it seemed like infant death surrounded us. It was a well kept secret until then. It was coming out of the woodwork. But these people hadn’t lost a baby like I did. They’d miscarried. I had miscarried before too. As heinous as that was, it wasn’t anything the same as losing Nate. Bereavement groups and friends kept sending me books and materials on infant loss, but they were invariably about miscarriage or abortion and simply didn’t apply to us. Finding Marlou’s email group was like manna from heaven. Grieving is definitely a process, but grieving for a child is never ending. You spend the rest of your life healing. A child is forever. It never goes away. Knowing someone who’s lost a child during pregnancy doesn’t help much, no matter how devastated they were. Knowing someone who lost a full term child helps a lot more. They understand what you are going through. And for someone who’s lost a child to vasa previa, speaking with someone who’s experienced the same unexpected horror is like speaking with your soul mate. This email group grew fast.

It wasn’t long after I found the email group that a writer subscribed. Cara had heard about vasa previa somehow and wanted to incorporate vasa previa as a subplot in her next book. One of the next subscribers was another bereaved mom and her sister-in-law, Amy. Cara, Amy, Marlou, and another subscriber decided to organize a foundation to raise awareness and conduct research on vasa previa. Every week there were online meetings and chat sessions. Cara and Amy developed a press kit. The organization had a name: The International Vasa Previa Foundation (IVPF). A subscriber from England procured a donation for web space and through the hard work of Marlou and Phil we were suddenly online. Nine months after I subscribed to the email list I was asked to help officially organize the IVPF and be its Secretary. Another subscriber was a corporate lawyer and guided us through the process of incorporation. By December of 2001 I finally received papers from the Illinois Secretary of State stating that we were officially a 501(c)(3) nonprofit, charitable organization. The next step was to file for tax-exempt status with the Internal Revenue Service. We went to the email list subscribers asking for donations to cover the $500 IRS filing fee. It took a year, with the limited number of subscribers we had at that time, but after many, many hours of wading through that application, Amy was finally able to send it off.

That first year we mostly gathered information to share with the lucky few people who were being diagnosed by then, and provided a support outlet for the bereaved. The email list had the same effect for these new subscribers that it had for me. The saddest thing was the deaths. The vast majority of vasa previa babies were still dying. A radiologist contacted by one of our members developed the trophotropism theory which describes how a low-lying placenta moves away from the cervical area and sometimes leaves velamentous vessels in its wake. We took questions from our subscribers, went to doctors for answers, and put this information on our website.

Chapter 13 – Enter Victoria

Victoria had just lost a baby to vasa previa. In an even more tragic way that most of us had. She KNEW something was wrong. She was bleeding and begged her doctor to take her baby. People bleed from many things during pregnancy, but this doctor would not listen to her or follow up. Instead he sent her home. When she bled again he sent her across town instead of to the nearest hospital. It was too late. Victoria knew she had failed her daughter. Eventually her very best friend found the IVPF and knew this is what killed Victoria’s baby. She contacted us and I encouraged her to have Victoria email us.

Victoria’s loss was devastating. She was a business owner and PR professional, having worked in major companies around the world. We knew she had been sent to us from God, but had a difficult time accepting such a gift. Victoria and I immediately became fast friends. We chatted online every day. She couldn’t live with Sophie’s loss any more than I could live with Nate’s. Finally she started coming to meetings, motivated (and paralyzed) by her grief. She never went back into the PR business and eventually sold her company. By this time there had been more medical papers published about vasa previa. Victoria found them all. She also found the authors and convinced one to help us with a study. The largest study to date was only 18 cases. We had more than 100 in our email group by then.

Victoria took over PR for the IVPF. She also spear-headed the study. A comparison case study was commenced. It took 2 years to collect all the records. In the end, with the rise in awareness about this condition, several other doctors were able to supply records from other institutions. When we went to the medical journals we had 155 cases, all of which demonstrated that prenatal diagnosis, hospitalization, and C-section delivery by 35 weeks changed the outcome of vasa previa pregnancies from only 5-0% survival to nearly 100%. This information was sad for many of us, but exciting. Victoria was motivated to contact the ultrasound organizations and IVPF members started staffing informational booths at medical conferences. We received a standing ovation at the very first one, where we presented only the preliminary results of our study. The IVPF has been attending obstetrical and ultrasound medical conferences around the world ever since.

Chapter 14 - Sophie's Walk

Chapter 15 – Growing Pains

There have been a lot of growing pains in the development of the IVPF. We’ve grown as human beings right along with it. People who come to us diagnosed are terrified. Those of us who weren’t only wish that we’d had that same chance. No matter the outcome, vasa previa traumatizes everyone it touches; inconsolable grief for the angels, and heart-stopping terror every time they look in their baby’s face for the miracles. A sense of guilt and “what if” plays on every member’s mind.

Everyone who volunteers does so only to help save future babies from this heartbreaking condition. There is no paid staff. This is a huge challenge. People come and go as their needs are met and they learn how to live again. Very few have the time or energy to put into creating awareness.

Changes in awareness keep occurring. We have gone from doctors insisting vehemently that vasa previa cannot be diagnosed to arguments over the lack of a standard of care regarding management. Many times doctors will attempt to manage vasa previa like placenta previa and it is just not possible to get a good outcome for the majority of vasa previa cases this way. Mothers are often in the position of having to educate their doctors about appropriate management. Discouragement runs high, but the persistent stay on for the surviving babies in this atmosphere of ignorance are joyous miracles to each and every one of us. For those of us who have lost babies to vasa previa it is vindication that our babies have not died in vain. For those who have those little miracles in their arms it is proof positive and encouragement to others that their babies CAN AND WILL survive. We operate from the standpoint of each being just as important as the other.

Ouisa's Perspective: 10 Years Later

The Worst Day of My Life

The worst day of my life was the day that my younger brother, Nathan was born. Nathan had vasa previa, a condition that causes babies to bleed to death when their mother’s water breaks. Nathan bled nearly to death before my mother went to the hospital. He died the next day. This day has haunted me since.

My mother woke up with blood on her one morning. She did not know what the problem was, but she knew that it was serious so she was driven to the hospital by my father. There, she had to get an emergency C-Section to deliver the baby. Nathan was born but he had to be resuscitated. He had major blood transfusions and the doctors said that he was brain-dead. He would probably die within the next twenty-four hours.

My parents brought me and my older brothers to the hospital. I was only six years old and did not really know what was going on. I was only told that I now had a baby brother and he was very sick. I did not know the full extent of his sickness. We went into a private room with Nathan and held him and took pictures. My grandparents and aunts arrived and held him as well. I did not hold him; I was scared to do so, so I just watched.

We were there all night. Nathan died the next day, in my mother’s arms. His major organs had shut down, such as his kidneys. He was cremated and his ashes were spread in the Atlantic.

Nathan had vasa previa, a condition which the baby develops while in the womb. The cord’s blood vessels are tangled, so when the birthing process begins, the pressure breaks these blood vessels and the babies bleed to death while still in their mothers. The only cure for vasa previa is to be scanned for it while pregnant and if they have it, have a C-Section before labor begins. The baby is completely healthy when it is born if it has a pre-labor C-Section.

Doctors usually do not scan for this condition. They only need to do one more test, but they do not. There are even risk factors for vasa previa, such as multiple births. Doctors are often not educated on this condition, which has near a one hundred percent mortality rate if not detected before labor. The doctors need to scan for it.

The worst day of my life made me realize how short life is. One has to live life to the most because they never know when death is coming. It made me a better person because it made think about other people and how they feel. I usually think things through before I do them, just to make sure that I am not hurting anyone else. It made me care about helping other people.

My mother started a foundation for vasa previa and I like to help with that by making more people aware of this condition. It has made me a better person overall, despite the sorrow.

My little brother’s death hurt me very much. However, it opened up another door, an opportunity to become a better person. It made me think about people and understand all that they are going through. I miss Nathan very much and now I remember his memory by helping my mother teach others about vasa previa so eventually, vasa previa does not kill babies anymore.

Vasa Previa - An Avoidable Tragedy

Pregnancy. The months and weeks leading up to the birth of a child are some of a woman's most exciting times, filled with the anticipation, hope, and joy of giving birth to a new life. When all goes well during the pregnancy, labor, and delivery, a beautiful healthy baby comes into the world. But what happens when a condition goes undetected or is misdiagnosed? If the condition is vasa previa, it means that 50-95% of the babies will die. Even in today's modern medical world of advanced technology and well-trained clinicians, oversights occur. This is especially true when it is a condition like vasa previa which is not part of the normal prenatal screening.

What is it? Vasa previa, reported in 1 of every 2,500 pregnancies, is a condition in which exposed fetal blood vessel(s) normally supported in the placenta or umbilical cord instead run through the amniotic membranes and cross the entrance to the birth canal, beneath the baby. The condition has a high fetal mortality rate (50-95%) due to rapid fetal hemorrhage resulting from the vessels tearing when the membranes rupture, or if the vessels become pinched off as they are compressed between the baby and the walls of the birth canal.

How does this occur? Blood vessels feeding the baby normally travel from the placenta through the umbilical cord and into the baby's bellybutton. With velamentous insertion of the cord, or certain other placental abnormalities such as bi-lobed placenta, parts of these fetal blood vessels run through the membranes instead of being supported in the placenta or covered by the Wharton’s jelly surrounding the umbilical cord. Velamentous vessels can develop as a low-lying placenta moves up in the uterus. This in itself is not uncommon, occurring once or twice in every 100 pregnancies. It is not necessarily life threatening or symptomatic and many babies with velamentous vessels are born without any problems at all. Pregnancies with exposed (velamentous) vessels located between the baby and the cervical opening (vasa previa) are in serious trouble, however. Velamentous vessels located between the baby and its way out will tear or break causing a large bleed which will compromise the baby immediately. Birth is disastrous for babies with vasa previa. These children share the womb with a time bomb.

So what can be done to save vasa previa babies? Infant death from vasa previa is preventable. Due to lack of awareness about this heartbreaking condition the infant death rate can be as high as 95%. However, 100% of prenatally diagnosed and properly managed vasa previa babies survive. It doesn't take high level ultrasound to diagnose, only awareness. Research shows that successful management consists of pelvic rest, hospitalization at 30-32 weeks, and C-section delivery by about 35 weeks.

Transvaginal ultrasound (an ultrasound view of the cervix) in combination with color Doppler (which shows blood flowing through veins) is the most effective tool in the diagnosis of vasa previa during pregnancy and should be utilized in patients at risk, specifically those with velamentous cord insertion, succenturiate-lobed and/or low-lying placentas (even if it corrects itself!), pregnancies resulting from in-vitro fertilization, multiple gestation (twins), painless bleeding, and women with a maternal history of uterine surgery (including C-section and/or D&C). Transvaginal ultrasound gives an excellent and direct view of the cervix. Turning on the color Doppler makes it possible to see vessels that may be crossing the cervical opening.

When vasa previa is detected prior to labor, the baby has a much greater chance of surviving. IVPF records show that 100% of prenatally diagnosed and appropriately managed babies survive vasa previa in the absence of other complications. Despite improvements in medical technology, poor awareness of the condition often leads to that fatal fetal vessel rupture. When vasa previa is found, hospitalization at 30-32 weeks and elective delivery by cesarean before labor begins can save the baby's life. Aggressive resuscitation and immediate blood transfusions for the neonate is necessary when a vasa previa rupture has occurred. Delivery and transfusion cannot occur quickly enough if the rupture occurs and the mother is not already in hospital. Without prenatal diagnosis, hospitalization, and early C-section, a vasa previa baby is almost sure to die. It only takes a moment to diagnose life...

Courtesy of the International Vasa Previa Foundation