Cole Jayden - CJH
In June of 2010, we learned we were going to have a little brother or sister to add to our family and were overjoyed. At our 20 week ultrasound, on September 15th, 2011, we had a very "abnormal experience" and several red flags. Red Flag #1: During the ultrasound our technician asked who my OB was. It seemed a little odd to me, but wasn't completely bazaar. Red Flag #2: At the end of the ultrasound our technician said she needed to go out and examine the ultrasound images. But that wasn't as worrisome a red flag as when I heard her calling a doctor, saying, "Well...she said that she saw some fluid" (I'll explain in a minute). Another red flag was raised when she asked us to step outside until the radiologist could examine the images further and she'd get back to us. Yes...I started FREAKING out at this point!
We had to wait in the waiting room for about 10 minutes, at which point the technician finally came out and said that everything looked great and the radiologist didn't see any problems with the images (at the time, I took this to mean that the baby was healthy - now looking back, I get that what she probably meant was that they had all the images they needed to send to the geneticist).
When we got home, Mr. Howard went in the bedroom to take a nap (he had been up since 2:30am). I texted a few people that the baby was healthy and that we were home from the appointment.
At about 4:30 I got a missed phone call from Kaiser. As soon as I saw the number, I went into the bedroom to wake up Mr. Howard to tell him that something was wrong. Kaiser was calling. On their message, the woman, Karen, told me that it wasn't an emergency but that I needed to call her back right away. I called her seconds later.
The next part of this conversation is a blur. I can't remember how much of this actually happened and how much I just remember happening. I was thinking a lot of thoughts and honestly, some of my thoughts are jumbled with what she said.
At the beginning, Karen asked me if my husband was home. I said yes. She asked if he would like to come sit with me. I don't remember what I said to her, but I sat down on my kitchen floor. She went on. "Your baby has cysts in the kidneys...this is caused by renal failure...you have very little fluid...have you seen any fluid leaking out of you? Babies need amniotic fluid to eat (to give their digestive systems practice), they "breath" it, it helps their organs grow)...your baby does not have enough amniotic fluid to survive...you need to have an appointment with a high risk OB and a geneticist to do a more high powered ultrasound and to go over your options...I would like you to see a doctor tomorrow to measure your fluid...are you okay? Do you need time before I go on?...Is there any history of kidney disease in your family? Do you have anyone in your family with birth defects? Stillborns? You're baby will not make it if he/she is in renal failure. Can I talk to your husband? I'd like to give him all the same information so that you don't have to repeat it..." and then I got off the phone. I sobbed hysterically, so loudly that I actually left the room so that I wouldn't interrupt Mr. Howard's conversation with Karen.
We went to bed thinking the worst, praying we would be able to get to see a geneticist some time before our scheduled appointment on Tuesday, but also hoping that the cysts were only in one kidney and that the baby could still function with the other kidney.
In the morning of September 16, 2011 I frantically called my OB's office and pleaded with them to move up my appointment from 4:10 that evening with a Nurse Practitioner to a morning time with an OB. They scheduled me a 9:50 appointment that morning. In the meantime, I received a phone call from my OB. She said she had just reviewed the radiologist's report, had looked at the ultrasound images, and asked me if we were doing okay. She apologized several times. I told her I didn't want to wait until Tuesday. She said she'd call a perinatologist and work her magic to get me some answers that day or the next.
We dropped Connor off next door and went to visit with the OB (not my OB, she was at Labor and Delivery). She came in the room and sat down with me. She said that she'd do another ultrasound to look at the baby. She said that the baby was in renal failure and that I didn't have enough fluid for the baby to survive. I only had hours or days.
While she did the ultrasound, she told us what she was looking at. She measured the baby's fluid and there were only 2 centimeters of amniotic fluid. I asked what "normal" was. She said 10. She showed us the cysts which were filling both kidneys. She told us the baby would not survive. She asked if we wanted to know what we were having. At that point we had never found out the sex because we wanted to be surprised (we were also surprised with our first son). She told us we were having a boy!
At that point, she began discussing our options...none of which I can even type out yet. None of them were choices I wanted to hear. I wanted Cole to be born a healthy baby boy. I sobbed and sobbed and sobbed and made the OB go over every single option a zillion times. I asked her questions until she had answered the same questions over and over. I told her I didn't want to make a decision. I told her I didn't want to be there. I pouted and cried some more. I asked Mr. Howard if God would hate us for inducing. I asked God to tell me what to do. I begged to not have to make a decision. I told the doctor that I didn't want to choose. She cried with me. She said she'd call our OB and talk to her.
While she was waiting for our OB to call back, she got a fourth opinion from a perinatologist at the office. She looked at the ultrasound images and the radiologist's report and found something else that the geneticist hadn't put in her report. The baby had something which affected the flow from the umbilical cord (reverse diastolic flow in the cord). This condition makes the blood move back towards the heart when the heart contracts.
At that point we were told that we should head to labor and delivery to deliver our beautiful baby boy. We came home, packed a bag, said goodbye to Connor, and handed everything over to my sister. We headed to lunch and then to the hospital.
After arriving at the hospital, we discovered that I had already lost 7 pounds from the day before (from the loss of fluid). Our OB came in the room (thankfully she was there at the hospital that day) and went over everything with me. She again explained that she had looked at the ultrasound images, had discussed the findings with the radiologist, the OB we had seen at the office, and the perinatologist at her office. She explained again that the baby was in renal failure and went over reverse diastolic flow in the cord. She told me she was so sorry. She explained how the induction would work and went over what I wanted to happen afterwards: did I want to hold the baby? Did we want to have a funeral? Did we want to bury the baby or did we want to cremate him? Did we have a name picked out? They have a photographer who will take photos for us, did we want that? Did we want a chaplain present? Did we want to bless the baby? And then she answered all my questions: would the baby have a birth certificate? How about a death certificate? What would the baby look like? Would the baby have a heartbeat when he was born? Would we be able to dress him in clothes? Did the hospital have clothes that would fit him? How long would we get with him?
In addition to all the normal questions the hospital asked us (What was my pain on a scale of 1-10? Did I smoke during my pregnancy?), I was asked two new ones. The first was: "What was my greatest need?" I laughed and cried at the same time. Did you know this was possible? How could I answer a question like that? My greatest need? I needed to understand why this was happening. I needed Cole to survive. I needed this not to be happening. I needed God to explain everything to me. I needed to fast forward 15 weeks to me giving birth to my beautiful Cole and bringing him home to meet Connor. That's what I needed. Instead of listing all this out, I answered, "I don't know!"
The second question was, "What was my worst fear?" This was easy! My worst fear was that Cole would be born with a heartbeat and I'd have to watch him die. My equally horrible worst fear was that Cole would be born with no heartbeat and I'd never get to meet him here on earth.
After what felt like a lifetime, on September 17, 2011 at 5:40am they told me that I was dilated to a 6 and that I was ready to have Cole. I guess when you're delivering a nine ounce baby, you don't need to be dilated very much. This is going to sound weird to anyone who hasn't had a 20 week gestational baby, but I didn't have to push. Thank God. The contractions were enough to deliver our precious angel at 5:43am on September 17th and in a second he was swept away to the warmer (this was something we had agreed upon). The hospital needed to do chromosomal tests within an hour of his birth and we felt that being able to hold him and then having to give him up would have been too hard given what we had been through. We had also agreed that our other angel (our amazing nurse) would describe Cole to us before we held him to ease our transition and make it all bearable.
While I was delivering the placenta, my mom arrived at the hospital. She came in crying and sat down and waited. Cole was still in the warmer with our nurse who was doing Cole's footprints and hand prints. After she ran the chromosomal tests, our wonderful nurse told us that Cole did not have a heartbeat (this was not surprising). She then began to describe Cole to us. She told us all about how tiny he was, about his little face, about his hands and feet, and about his skin. She did it in the most gentle, loving, patient way. Then, she wrapped Cole up in a tiny white blanket and brought him to us.
I had imagined that they'd put Cole in my arms and I'd burst into tears. I imagined that I would sob and sob and sob while staring at him and that there would be no way I could ever smile in a photo with him. But this was not the reality. While I was holding him, I was quiet. Somber. No tears. While I stared at him, I looked at his features and decided he had his Daddy's nose. No tears. Somber. I posed for a photo with him and smiled. How could I not? I was holding my son. I was holding my precious baby. I was holding Cole. This was the little boy I had wanted to meet from the very minute I had found out I was expecting. There was happiness amidst all the sadness because we had given birth to a precious baby boy. I look at the pictures now and see me smiling with Cole and can't understand it. I have no happiness now when I think of him. I think this is perhaps one of the big differences between losing a child who is older. I don't have any fond memories or funny stories. So even though in the moment I was happy holding my son, I look back and see only pain and sadness.
After maybe about 4 hours of holding him, we decided that it was time to say goodbye. I will not describe why, but I am sure that you can understand why we had a limited number of hours with him. When we called the nurse to come, it was the hardest moment I had experienced ever in my life. I did not want to hand him over and yet I knew I had to. The nurse lovingly swooped him up in her arms and spoke to him, "Okay, sweetheart, it's time to go" she said as Mr. Howard and I bawled. She talked to him from the time she put him in her arms until the time that she stepped out our door (I'd like to think she talked to him all the way to the morgue, but I do not know). "Mommy and Daddy love you," she said as she continued to walk towards the door. "Come on, sweetpea" we heard as we took our final glimpse at our son in her arms.
Hardest. Moment. Of. My. Life.
Even as I recall it now, I'm brought right back to the pain. It is so odd to feel so guilty about needing to send Cole's body to wait for an autopsy, even though I knew I had no choice. But I wanted someone else to make that decision for me. And yet, I didn't want anyone to tell me when to give up my son. There was no right thing to do in that instance.
The next few weeks were a complete blur. We accomplished firsts we never thought possible. We handed over our baby to go to the morgue. We cried. We drove home empty handed. We told friends, coworkers, and family. We made the decision to cremate him. We went to the funeral home. We picked out an urn. We continued to wake up. We met with a social worker. We cried. We wrote an obituary in the newspaper. We continued to wake up. We held a memorial service for him. We received the photos the hospital had taken of him. We continued to breath. We opened his autopsy report and read it. We called the funeral home to pick up his urn. We continued to parent Connor. We picked up Cole's ashes. We brought him home. We received food and flowers. We cried. We wrote thank you's. We went back to work. We answered questions like, "how many kids do you have?" and "how old are they?" We stared at his footprints. Our hearts continued to beat. We tried to remember the moments we had with him. We sobbed. We survived his due date. We talked about him constantly. We prayed, sobbed, continued to breath, continued to wake up every day, and continued to parent Connor. If you would have asked me two years ago if I could ever do what I did, I would have said emphatically, "Never! I would die." But somehow you don't. Somehow you keep waking up. Somehow you keep breathing, despite your nightly prayers to just be taken away. And somehow months pass and you think, "how on earth did I get here?"
The doctors believe that Cole had Multicystic Dysplastic Kidney Disease, based on the results of his autopsy. If Cole had only had one multicystic kidney, he more than likely would have survived. But unfortunately, both kidneys were filled (this only affects 1 in 10,000 babies). In addition to having 2 kidneys filled with cysts, Cole's left kidney was also significantly enlarged. Our poor baby didn't just have Multicystic Dysplastic Kidney Disease, but also reverse diastolic flow in the cord (blood moves back toward the heart when the heart relaxes), which meant that Cole wasn't getting enough nutrients.
There was a slight chance that Cole had Polycystic Kidney Disease, which is a genetic disease (and would NOT be a good disease to have). But the doctors did ultrasounds on my kidneys and Mr. Howard's kidneys in order to determine whether or not we had cysts in them (and were unaware...apparently it's possible to have cysts and not have any symptoms). While I did have some cysts (two small ones), they were not consistent with Polycystic Kidney Disease. Generally by 30, if I had PKD, I would have had at least two cysts filling both kidneys. Two tiny cysts in one kidney are not reflective of someone my age with PKD. This clears us from Autosomal dominant polycystic kidney disease. The doctor's feel comfortable calling what Cole had Multicystic Dysplastic Kidney Disease (and not PKD).
A few short months after our beautiful baby boy went to heaven, we found out we were pregnant again. And a month or so after that, we found out we would be welcoming twins! Because Cole had been diagnosed with MDKD, we believed that there was no genetic component to the disease and were told that there was a 4% (I think I'm getting that number right) recurrence rate in subsequent pregnancies of MDKD. We kept praying and praying right up until our March 31, 2011 ultrasound. Unfortunately, we got some sad news. Baby Boy's kidney was multicystic (only one). We held out hope that Baby Girl's kidneys would stay clear and Baby Boy's second kidney would continue to be cyst free. Then in June of 2011, at a follow-up ultrasound for Baby Boy's kidneys, we learned that Baby Girl had a second ureter attached to her kidney and potentially could require surgery. So, essentially we were convinced that because 3 of our 4 babies seemed to have kidney issues that we had some sort of genetic disease/predisposition to kidney problems.
Isabella Lynn (ILH) - Also Known As "Baby B" or "Baby Girl"
We found out June 16, 2011 in a fetal ultrasound that Isabella has a second ureter connecting her bladder and kidney. After she was born, the NICU ordered an ultrasound of her kidneys. The results indicated that she needed to have another ultrasound done again in a few months, but that it did not look like she would need surgery to have it removed. In September after she was born: we got the official diagnosis. Isabella has a complete duplicated ureter. She had another scheduled ultrasound in January 2012. We were praying Isabella's duplicated ureter was not causing reflux (urine going back up into the second ureter which would cause infection and potential surgery). And guess what? They couldn't even find the duplicated ureter at all!! Isabella is currently doing great!
Aiden Patrick (APH) - Also Known as "Baby A" or "Baby Boy"
We found out prenatally March 31, 2011 that Aiden has one non-functioning, multicystic kidney (multicystic dysplastic kidney disease in his left kidney) and could potentially require surgery to have it removed. After our September 2011 appointment, we learned that what we really want is for Aiden to have no function in his kidney (sounds funny, doesn't it?). The doctor said if he had between 1-25% function it could cause problems which could mean potential surgery. No function would most likely result in Aiden's kidney simply shriveling up. He had a Nuclear Medicine appointment on December 19th, 2011. Right around Christmas time, we learned that his left kidney had no function. After several follow-up appointments, we learned that Aiden's left kidney had completely atrophied and was no longer an issue. Aiden currently has one kidney and is doing great!