I got a call from the Doctor 2 days later and he told me that I needed to go see a specialist as soon as possible because the tech saw something in the baby’s belly. I was scared, confused, and worried about my little baby. My doctor told me that there was nothing to worry about and that everything should be fine; he just wanted to do this appointment as a precaution. We were lucky enough to get an appointment two days later.
May 1, 2015 was the worst day of my life. I went into the appointment with high hopes and left heartbroken. As I sat down in the specialist office with a huge screen in front of me, the tech started moving around my belly with her tool. All I could see on the screen was a big, gaping, black hole in the middle of my wiggling baby’s body. The technician said, “well, it’s a boy, but I need to go get the doctors.” My husband and I looked at each other and I just started crying. We knew something was wrong. The doctors came in and told me that our baby had what was called Lower Urinary Tract Obstruction (LUTO). To put it simply, his urethra was blocked and he could not urinate, leading him to retain the amniotic fluid inside his bladder. They told us that there was nothing that could be done, and asked us if we preferred to perform an abortion there on the spot. We obviously said no. We asked if anything could be done, but the doctors responded that there had been some experimental treatment, but that they never had positive outcomes. Luckily, a front office employee saw how distraught I was and mentioned that she could get us a second opinion appointment from her old doctor’s office and that if anyone could do anything for our baby, he could.
That’s just what we did. We had an appointment a week later with a surgeon who specializes in high risk and unusual pregnancies and complications. The week leading up to seeing the doctor was the hardest and most trying week of our lives. We prayed and we hoped and practiced a lot of patience. We hoped that there was something – anything – that could be done, even though the previous doctors told us there was nothing.
A week went by and we went to our appointment with the specialist, who turns out to be one of the top doctors in the world (in this field). He told us that there was a tiny bit of hope, that there was something that could be done, but that the odds were not great for a good outcome. He sat us down and told us that there is a surgery, that can be done in utero, but that the baby had to go through and pass numerous tests in order to qualify. The baby would have to be in perfect health, with zero abnormalities for this surgery to be worth it in the end, and even if the baby did get the surgery, it could still have all different types of health problems after it was born. We didn’t care; we wanted to do anything we could to get this sweet baby here.
We started all the testing. I would go in every week and get a needle in my belly, that went into the baby’s bladder, to drain the fluid for testing. After a month of these tests, the results came back and we had found out that the baby had qualified for surgery. I don’t think I have ever been happier than I was hearing that news. After a month of thinking I was going to lose my baby to now knowing that there was at least a little bit of hope, I was thrilled.
Baby boy and I went in for surgery a couple days later (at 18 weeks) where the doctor went in through my stomach into the baby’s bladder and placed a pigtail looking coil to drain the bladder and replenish the necessary amniotic fluid. We were so happy with the surgery that I ignored the following soreness and discomfort.
I decided that I really wanted to have a natural delivery because I felt so connected with my baby boy and I wanted to at least hold him and see him even though he wasn’t going to make it. The doctor came in and asked me what I wanted to do and I told her my choice, but then I asked her why there was so much fluid still around the baby. My sweet husband insisted that we call our doctor whom was out of town and tell him our situation. After waiting for him to land in New York City, they finally got a hold of him. The doctor explained to our surgeon what was happening and he wanted to talk to me and he sternly said, “Whatever you do, do not let them touch you. What I think has happened was when I did the surgery, the outer layer of your sac had a hole and it was leaking but your inner layer of your sac is still in tact. I want to keep you in the hospital for a couple days to monitor for infection and I want them to measure your amniotic fluid every 12 hours.” So that’s just what we did. The fluid looked fine. And I was able to go home…for a couple weeks. To this day, I’m convinced that this Dr. wasn’t sure there was anything going on beyond my water really being broken, but just wanted to buy us time and not have take our baby from us. I was still on strict bed rest in hopes that the fluid leaking would lessen as I lay down.
Nash is now almost 2 years old and is our miracle child. I like to call him my little fighter guy because that is just what he is. He is pure sunshine and he is walking (mostly running) and urinating like any boy would. He is a fighter and I couldn't be happier to be his mama.