Nobody can tell a birth story better than mom herself! Words today straight from the source herself – Jillian, Ben’s mom
“My pregnancy changed at my 20-week appointment. Up until that point everything had gone by the book. I went to all my scheduled appointments, we heard the heartbeat, we decided to do the sequential testing and all of that had been normal. I am not a smoker, and with the exception of having several drinks at a party the weekend before my missed period, I didn’t drink.
There were the normal worries, of course. I felt hyper-aware of my body. Any twinge in my belly that didn’t seem normal had me worrying something may be wrong. When I would go for a run (something I was doing 4x a week prior to pregnancy) I was worried about maintaining a safe heart rate and keeping my core temperature from getting too hot. And, I’d be lying if I said I didn’t worry my running would shake the baby loose. I know that’s not how it works, but any pregnant woman can back me up when I say not all worries are logical or make sense.
When the 20-week appointment came my husband, Dan, and I were excited. We hadn’t had an ultrasound since the sequential test and we were excited to see our baby again and find our for sure if it was a boy. Our ultrasound tech had told us she was willing to bet us $20 that it was a boy when we had the sequential test, even though she couldn’t tell us for sure until 20 weeks.
The beginning of the appointment went as expected. We saw two arms, two legs, ten fingers, ten toes, a head, and a penis (glad we didn’t bet against our tech!). Then things changed. Our tech started checking the anatomy. Everything was looking good to start but then she started spending a lot of time on one area and finally told us she had noticed several dark spots on the right kidney. She was pretty aloof about it because technically she’s not supposed to say anything. There was mention of maybe a cyst or a blockage but that the doctor would talk to us when we had our appointment after the ultrasound was finished. The way she talked about it made me think it wasn’t a big deal and not cause for concern.
We’d been seeing a different doctor every appointment so we’d at least have had one face to face with everyone at the practice before I went into labor. You never know who’s going to be on call when the moment arrives. That day I saw a doctor who told us there were cysts on the kidney, and went on to ask and confirm that I was an Ashkenazi Jew. When I said I was, she then went on to tell me that was the cause of the issue and there were 96 chromosomal issues that could occur because I was an Ashkenazi Jew. She printed out the list of them to give me. She’d be giving a referral for a level 2 ultrasound and consult with a perinatal specialist along with genetic counseling. Within 15 minutes, not only had we been told there was an issue with our baby, but it was also my background that had caused it. I asked if it was definitely a genetic issue, and not something that could just happen during development, and she told me this was not common and most likely genetics.
The guilt I felt was indescribable. I had no idea that being an Ashkenazi Jew could cause health issues in my baby. My sister had two healthy pregnancies and children. My mom had had two healthy pregnancies. There was no evidence in family history that being an Ashkenazi Jew was a health issue. I sat crying in the exam room after the doctor had left, because there was a problem and all I could see was that it was my fault. This appointment I’d been so excited for had ended in a cloud of worry and fear.
A couple of days later I got a phone call to schedule the perinatal appointment and genetic counseling. Dan and I hadn’t told our family yet because we wanted to wait until we knew for certain what was going on, but when the earliest appointment we could get was two weeks away we ended up telling our parents. The worry and fear had been eating away at us those couple of days and talking about it helped.
Taking a step back and looking at the big picture and doing some research of our own helped a lot. Not only was this actually common, but a person can live a perfectly healthy and normal life with ½ of a kidney. The spots they saw on the ultrasound were only on one of the baby’s kidneys. Things could definitely be worse. The cysts could be on the liver, lungs, heart, or brain. Organs could be growing outside of his body. Yes, there was an issue, but it was not life or death.
Two weeks later we saw the genetic counselor and had our perinatal appointment with level 2 ultrasound. The perinatal specialist was able to explain the situation to us in a way the doctor at my OB’s office hadn’t been able to. First and foremost, he told us that my Ashkenazi background had in no way caused the issue. It was a 1/5000 anomaly that had happened when I was 5 weeks pregnant. He explained that the kidney is like a sewer system with a lot of pipes connecting different areas. When the kidney was developing, some of the pipes never connected and that is what caused the cysts/blockage.
We set up another appointment with the perinatal specialist when I was 32 weeks pregnant because that’s when the kidney stops growing in utero, in addition to an appointment with a pediatric urologist. I’d been going to all my normal doctors appointments at my OB’s office, but made it a point to avoid the doctor who had given us the news about the kidney. I’m sure it wouldn’t have mattered who had told us about the cysts/blockage, but being told it was definitely a genetic issue when it was not had rubbed me the wrong way and I didn’t care to see her again.
When we went back to the perinatal specialist at 32 weeks we got to see our baby via 3D ultrasound. They took a bunch of pictures and gave us a disc to bring to the pediatric urologist we were seeing the next day. Our pediatric urologist was fantastic. He broke down the 3 different scenarios of what could happen in regards to the kidney. Scenario 1: the spots on the kidney were a blockage that they would fix via surgery and he would have two working kidney. Scenario 2: there were cysts on the kidney but they weren’t doing anything, so they could either leave it alone and check periodically, or remove the kidney if it would be a constant source of worry. Scenario 3: the cysts were growing and could push into other organs/the kidney would be non-functioning and need to be removed. Once I delivered, we would contact his office and they would set up an ultrasound and we would go from there.
At this point in my pregnancy I had to have weekly ultrasounds and non-stress tests to monitor his movement and the amniotic fluid, but everything was normal and I ended up delivering 5 days after my due date.
Six weeks after Ben was born he had an ultrasound and an appointment with our pediatric urologist. He told us that the kidney was a mass of nothing and it was growing and would need to come out so it wouldn’t push on any of his other organs. Even though I’d known this was a possibility since I was 20 weeks pregnant I cried. I’d convinced myself in my head that the cysts would have disappeared, or they wouldn’t have been doing anything and we could just monitor them over the coming years. Our doctor told us that they would wait until he was 60 weeks (the 40 I was pregnant counted) because that was when the anesthesia would be safest. His office called me the next day and we scheduled the surgery. It was still 14 weeks away, over 3 months of more waiting.
The bright side of it all was that Ben had no idea what was going on. Sure he had an ultrasound but that didn’t hurt, and according to our pediatric urologist he wasn’t in any discomfort from the weird mass that was his right kidney. There were definitely times when he would be having a bad day and I could do nothing to comfort him where I wondered if it was the kidney, but I’ll never know for sure and those days were few and far between. For the most part, except for a week around Mother’s Day where all he did was scream or cry, he was a happy, giggly, smiley baby.
The week leading up to the surgery was stressful. We’d been waiting nearly 9 months for this and all of a sudden it was here. There was the pre-op appointment with our pediatrician, and a phone call with a surgical nurse at the hospital who went over what the day would look like:
7:00am- Arrive at hospital for check-in
8:30am- Right Nephrouretectomy
10:30am- Move to wake-up room
11:30am- Reunite and move to private room
She answered all my questions that had come up from the information book that had been mailed to us and I had his bag packed later that day, comfort items washed and bagged, and bottles set aside.
We arrived at the hospital at 6:45am for check-in. We were brought back and the nurse had us help wipe him down with special wipes, put on a fresh diaper, and hospital pajamas. And then we waited. We met the anesthesiologist, the OR nurses and finally our doctor popped in to answer any last-minute questions before they got started. At 8:30 on the dot one of the nurses came to collect Ben and his comfort items and brought him back to the OR while one of the other nurses on the floor brought Dan and me back to the waiting room. At 8:50 I received a phone call from the OR nurse that Ben was under the anesthesia and the procedure had begun. I went and pumped and then went to get some breakfast for Dan and myself.
At around 9:30am our doctor appeared in the waiting room. I’m not going to lie, I got nervous when I saw him. The OR was booked for 2 hours, it hadn’t even been an hour since I got the phone call from the nurse, why was he out in the waiting room looking for us? But, apparently it’s a quick procedure and they book extra time as a buffer. Everything had gone great and Ben was now in the wake-up room and they would come get us as soon as he was awake and we would move up to a private room. That hour seemed to move at snail’s pace but finally a volunteer brought us back and we met up with Ben as he was being moved upstairs to his room. He was pretty groggy but he was awake.
We arrived at our room and met our nurse. Ben seemed to be pretty uncomfortable so they gave him some morphine and Tylenol to help ease the pain he was feeling. He snoozed a lot and when he was awake he was pretty displeased by the IV and monitors on his feet, his favorite toys.
He didn’t eat much, and it took him awhile to pee- something they were closely monitoring – but all his vitals looked good and by the next day he seemed back to himself. They weren’t giving him any pain medication except for Tylenol, and though his appetite wasn’t quite back to normal he was eating much better. The doctor overseeing us now wanted to keep us the full 2 days because it was a big surgery and they wanted to make sure everything continued to look good, but Ben could be taken off the big IV so we could go for walks and move him around more easily. He was smiling and giggling and being friendly with all his nurses.
We went home the next day and though it was a rough first night, we’ve settled back into our normal routine. When you look at him you’d never know he’d had an organ removed several days ago. He’s trying to roll over, and was trying while still in the hospital. The incision doesn’t seem to bother him a bit, and we haven’t had to give any Tylenol since the first night we were home (and honestly, I think he was just crying because he was used to being with us and was now in his crib in his room, as opposed to crying because he was in pain). We have a follow-up appointment in a month to make sure everything looks ok, but we are past the hard part.
I never thought parenthood would be easy (and if Ben is anything like me, he’ll be a handful), but I never expected a health issue. It’s strange to think that after 9 months it’s finally over and we can breathe easy. A weight has been lifted off our shoulders and we can focus on the fun stuff.” – Jillian
Beauty is when we are brave, when we love without limits, when we get over ourselves looking perfect and see ourselves looking strong.
Watching how a woman goes thru labor was like watching a true miracle unfold. When Ben hit moms chest, I had the chills. Most people think birth and cringe. Why would you want to photograph that. And I see the exact opposite. It was powerful, stunning, and most of all, just beautiful. The pure, raw emotions surrounding this birth was a sight in itself.
Jillian- Thank you for letting me photograph your miracle and allowing me in during a once in a lifetime experience. I promised you the images would be beautiful, emotional, tasteful and perfect! I also promised you I would be a fly on the wall during your labor, but I couldn’t help at the end to cheer you along, when you wanted it to be over!
Dan- Thank you for going with the idea of having me in the room during such an intimate time for you and your family. All of the photos of you supporting Jillian along the way show me so much emotion and the love you have for her!
Ben- Thank you for being born! And I hope you look back at this post, along with your photos and realize how lucky you are to have such wonderful parents!
XOXO Angela + Jillian